Pulford. Impacto Psicológico Cuidar Persona Con DCL

The psychological impact of having a family member diagnosed
with Mild Cognitive Impairment
Polly Pulford
Submitted for the Degree of
Doctor of Psychology
(Clinical Psychology)
School of Psychology
Faculty of Health and Medical Sciences
University of Surrey
Guildford, Surrey
United Kingdom
September 2016
2
Abstract
Background: The study aimed to investigate the perspective of family members of
someone diagnosed with Mild Cognitive Impairment (MCI) and its’ psychological
impact. Little is known about how MCI impacts the life, roles and relationships of
family members. Similarly, there is very limited research into how families of those
with MCI relate to the role of ‘carer’ and their opinions of the diagnostic process.
Methods: Participants were recruited through opportunity sampling in a memory
assessment service in the South of England. Seven family members took part in semi-
structured interviews to gain a thorough understanding of their experiences. The
sample was made up of four females and three males who identified as spouses or
offspring of the person with MCI. Interviews were transcribed verbatim and analysed
using inductive thematic analysis.
Results: Four major themes were revealed across the data: “The ups and downs of the
diagnostic process”, “MCI is not a clear concept”, “MCI has made the future
uncertain”, and “Changes are coming”. There were varied opinions about the
diagnostic process and people were concerned about the lack of available information.
Following the diagnosis, relatives had been left managing a lot of uncertainty, and
people noted different responses to and impacts of this. There were discussions about
existing and anticipated changes to life as a result of MCI.
Conclusions: The current research identified several new ideas in the MCI literature,
including relatives’ positive experiences of the diagnostic process, not yet identifying
School of Psychology: PsychD Clinical Psychology

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with the ‘carer’ role and concerns about how people are referred into memory services.
There was support for existing literature regarding the difficulty of managing the
uncertainty of MCI and the changes caused to relationships as a result of MCI. Several
clinical implications were suggested that could improve family members’ experience
of the diagnostic process, coping and adjustment.
Acknowledgements

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I would like to extend my gratitude to those who assisted me throughout my research
project, without whom the work would not have been possible. I would like to say
thank you to my research supervisor Dr Paul Davis, who provided essential support,
patience and guidance in the development of this work. I would also like to thank my
clinical tutor Dr Sarah Johnstone for her support, kindness and supervision of my
personal and professional development throughout the three years of training.
This piece of work would not have been possible without the help of the clinicians
who generously offered their time to help with recruitment. Special thanks go to Dr
Victoria Hill who was dedicated and enthusiastic about this project from the
beginning. I would also like to show my gratitude to those who volunteered to take
part and contributed so kindly to this research.
Finally, I would like to thank my partner Chris, who has been an unwavering source of
fun, distraction, generosity and encouragement during my training experience. I could
not have done it without him. Also huge thanks to my family and friends for their
endless support, love and patience during the last three years. To my friends and
colleagues on Cohort 42, thank you for the journey.
Contents

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Research
Major Research Project Empirical Paper 6
Major Research Project Appendices 56
Major Research Project Proposal 104
Literature Review 118
Clinical experience
Overview of training experience 157
Assessments
Year one 160
Year two 160
Year three 161
Research
MRP Empirical Paper

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INTRODUCTION
When cognitive changes occur in later life and a person is diagnosed with dementia, it
is often their family members who take on the majority of their care needs (Carers UK,
2015). Over time, the psychological impact of caring for a person with dementia
increases as cognitive decline progresses and their level of dependence increases
(Mioshi et al., 2013). There is extensive research into the perspective of family
members who care for someone with a dementia such as Alzheimer’s disease,
providing a wealth of knowledge about how family members adjust to becoming a
carer, the wider impact of caring and their experiences of seeing their loved one
change over time (e.g. Bunn et al., 2012; Gallagher et al., 2011). Taking on care
responsibilities causes changes to the roles and relationships that the individual valued
prior to the cognitive decline and can cause high level of carer burden and
psychological distress (Mace & Rabins, 2011).
Despite the wealth of knowledge into the experience of families of those with
dementia, less is known about experiences at the very beginning of the cognitive
impairment process. Individuals with a diagnosis of mild cognitive impairment (MCI)
are at the beginning of cognitive change (Dickerson et al., 2007), and provide
important information about the impact of cognitive decline on family members at the
earliest stage of the process. Little is known about whether MCI leads to role or
relational changes for relatives, or if they notice any impact at all. There is a lack of
understanding about how early on in the process of cognitive decline people identify
themselves as carers, how people experience the process of a relative receiving an MCI

7
diagnosis and more generally how MCI impacts on family members’ psychological
coping mechanisms and relationships.
Mild cognitive impairment
Over the past ten years, MCI has become an area of increasing research interest (e.g.
Geda, 2012). People with MCI (PwMCI) are at an elevated risk of developing
dementia relative to the normal population and MCI is seen as a transitional phase
between normal ageing and dementia (Albert & Blacker, 2006). A diagnosis of MCI is
based on criteria devised by Petersen et al. (1999); it applies to individuals with a
memory complaint beyond that seen in normal ageing, alongside intact intellectual
functioning and ability to perform activities of daily living (ADL’s). This was later
revised to include different subtypes of MCI (Petersen, 2004), depending on the type
of cognitive impairment seen. The conversion rates to dementia for PwMCI vary, with
between 2-25% reported to develop dementia over differing time scales (Werner &
Korczyn, 2008). Some PwMCI remain stable, while some return to a normal level of
cognition (Gauthier et al., 2006). There is some ambiguity about whether MCI actually
exists as a discreet disorder; given its heterogeneity there are arguments that MCI
should be viewed instead as the very early stages of dementia or symptoms of a
temporary mental health difficulty (see Werner & Korczyn, 2008).
There are currently various diagnostic pathways to receive an MCI diagnosis in
England. Usually, it involves the same processes as receiving a diagnosis of dementia,
with an initial GP consultation, a referral to a memory clinic and several assessments.
Often, MRI brain scans and lengthy neuropsychological assessments are needed in
order to clarify the diagnosis (Alzheimer’s Society, 2015) and the time taken to receive
a diagnosis can vary, but can take at least six months (Alzheimer’s Society, 2015).

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There are some benefits of receiving an MCI diagnosis, such as identifying
individuals who might go on to develop dementia and regularly monitoring their
progress (Alzheimer’s Society, 2015). However, given the large variations in statistics
of progression of MCI and how MCI is understood, there is a considerable amount of
uncertainty for PwMCI and their families around how or if MCI will progress. For
some, a diagnosis of MCI for their loved one may signal that dementia is inevitable,
while others may not identify it as a problem, resulting in different psychological
responses. Similarly, research suggests that clinicians can be unsure as to when and
how to deliver the diagnosis (Werner & Korczyn, 2008); this ambiguity may affect
how individuals received their diagnosis and the explanations they were given. There
is almost no research about people’s experience of receiving a diagnosis of MCI
(Gomersall et al., 2015) and the impact this has on later coping for both the PwMCI
and their family.
Influences on stress for family caregivers
Research into carer stress is well established for dementia, but it is unclear whether
these models can be mapped on to relatives of PwMCI. Pearlin et al. (1990) argue that
stress for family carers in dementia occurs when the care role goes beyond that
involved in close relationships, to a position where the caregiving is unequally
distributed and above that which the person can cope with. Higher levels of cognitive
impairment and having to take responsibility for relatives ADL’s are argued to
increase stress, alongside more global factors such as family conflict and reduced
social interaction.
Unlike relatives caring for someone with dementia, families of PwMCI have to
manage the noted uncertainty of how the MCI will progress in the future. The idea that

9
uncertainty can cause stress is well established (e.g. Greco & Roger, 2003; Zakowski,
1995), and tolerance of uncertainty would be an extremely important factor to consider
when thinking of the impact that MCI has on family members. If relatives perceive the
uncertainty as unmanageable, they would be more likely to experience psychological
distress associated with this (e.g. Dugas & Robichaud, 2007). Another potential source
of stress for families relates to the idea of ambiguous loss (Boss, 1999). This relates to
the confusion felt by people when someone they love is both ‘there’ and ‘not there’. As
cognitive impairment progresses, people are physically ‘there’ but increasingly ‘not
there’ cognitively. For families of PwMCI, this dilemma may add to their confusion
about the future and cause further stress and anxiety. Finally, the perceived level of
cognitive impairment is closely linked to stress for relatives (Dean & Wilcock, 2012);
consequently, if family members perceive that the PwMCI has significant impairment,
coping and adjustment would be affected.
It is pertinent to consider how people’s expectation of becoming a carer might
differ between individuals and between different role types, as well as how
expectations are shaped by systemic cultural ideas. The caregiver identity theory
(Montgomery & Kosloski, 2009) illustrates how idiosyncratic the role of caring is how
it impacts differentially on different types of relationships and can lead to changes in
identity for the carer. Someone married to a PwMCI might feel quite differently about
becoming a carer for their spouse than offspring; in Western culture there can be
expectations placed on children to care for their parents when they get older (e.g.
Stuifbergen & Van Delden, 2011), but the same does not necessarily apply to spouses.
Similarly, becoming a carer when you are an only child could have different outcomes
to when caring is shared between multiple family members.
What is unclear from the existing literature is whether spouses and family

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members of PwMCI even identify themselves as carers yet, in the same way as
families of people with dementia do (Austrom & Lu, 2009). Given that the impact on
every day functioning should be mild (Petersen et al., 1999), it could be unlikely that
people have started to view themselves as traditional “carers”. Being a concerned
relative is a more informal role; this may influence how easily people can access
necessary information and support. It would be worthwhile understanding how
families of PwMCI actually feel about their role to help inform practitioners of how
best to approach this issue. This role confusion has been suggested as an area for future
research, to help understand the perspective of family members of PwMCI and how
this ambiguity impacts on their ability to access support for themselves.
Literature on the family member perspective of mild cognitive impairment
The existing qualitative research on the perspective of families of PwMCI is mixed in
its conclusions, possibly reflecting the heterogeneity of MCI and the experience of
families as a result. Dean and Wilcock (2012) concluded from their literature review
that further research is needed to clarify how families experience MCI. However, there
were themes around role and communication changes negatively impacting
relationships, and emotional challenges leading to depression in some relatives.
What is clear from the literature is the negative impact of the uncertainty of an
MCI diagnosis and the lack of information available to family members. Frank et al.
(2006) and Dean et al. (2014) highlighted that people were unsure of what the term
‘mild cognitive impairment’ actually meant due to a lack of clear explanations during
diagnosis. Inevitably this led to confusion, as relatives were unclear about the
prognosis and what they could do to help. Corner & Bond (2006) highlighted how
ambiguous the MCI diagnosis could be, with one participant explaining that he

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interpreted MCI as dementia. Blieszner et al. (2007) noted how the uncertainty of MCI
progression meant that couples stopped making plans for their future as they were at a
loss as to what to do. Similarly, Roberto et al. (2011) found that interpretations of MCI
varied hugely even within families and impacted on people’s adjustment. Together,
these studies demonstrate one of the key difficulties within the MCI diagnosis. This
ambiguity links to how the diagnosis is actually given in memory clinics; because
there is minimal research in this area we do not know how uniform the delivery of
diagnoses is. The uncertainty reported could be a reflection of people receiving
confusing and conflicting messages, as well as having insufficient relevant information
provided at the time.
Loss and anxiety for the future were themes highlighted in the literature. Some
research found that people speak of having already “lost” their spouse or parent
through MCI, or anticipated losing them in future as a result of further cognitive
decline (Bleiszner et al., 2007; Woolmore-Goodwin et al., 2015). Naturally, carers
reported a high level of sadness in response to this anticipated decline. This again
highlights the difficulty of managing uncertainty; people’s fears for losses in the future
were impacting on their ability to cope in the present.
Research is inconclusive as to how social relationships of relatives of PwMCI
are affected. Some studies report that people make more effort to maintain social
networks (e.g. Davies et al., 2010; Roberto et al., 2011), while others find their social
support greatly reduced (Blieszner & Roberto, 2010). The protective nature of social
support is well documented (e.g. House et al., 1988), and Woolmore-Goodwin et al.
(2015) demonstrated that relatives felt more able to cope when they shared their
experience with others. Research has suggested that spouses felt as though they had
lost their friend and confidante with MCI (Adams, 2006) and that communication

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difficulties had a large impact on the cohesion of marital relationships (Davies et al.,
2010). These studies highlight how even mild cognitive change can cause difficulty,
and how hard people find the transition from being a “normal” family member to a
more active “carer” role. Further research is needed to increase understanding of how
people can protect themselves from the anxiety caused by MCI.
Another common finding was relatives’ experience of role change, which
impacted on the dynamic of the previously held relationship. Lu and Haase (2009) and
Roberto et al. (2013) found that relatives experienced substantial role changes; spouses
had to take on more of the PwMCI’s previous roles as cognitive impairment
progressed, which impacted on normal routines and how spouses identified themselves
within their couple. Increasing role change can also lead to increased conflict between
couples, rather than adjustment to the new roles (Pasymowksi et al., 2013). However,
it is unclear as to the stage of cognitive impairment experienced by the PwMCI here;
MCI should not impact on ADL’s, yet carers reported having to “take over previous
roles”, suggesting more advanced cognitive decline than that found with the traditional
MCI diagnosis.
Interestingly, in studies focusing on MCI in China and Taiwan, there were
more hopeful discussions with family members than those conducted in Western
countries. Kuo and Shyu (2010) and Dai et al. (2013) found that memory changes are
seen as a normal part of ageing in these areas, and MCI did not cause anxiety or that
alter how the PwMCI was perceived. Carers were more concerned about whether the
individual had dementia, which was more strongly associated with negative stigma.
Although this is based on only two studies, it suggests that in Western culture, MCI
may be more directly suggestive of ongoing decline and dementia than in other areas.
Dean et al. (2014) are the first to consider how PwMCI and their families

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experience the diagnostic process for memory problems in England. There were
positive and negative experiences reported, with relatives finding the process more
negative overall. Families felt that GP’s were dismissive of the reported memory
difficulties, which could reflect the uncertainty of the diagnosis and a lack of
confidence in recognising the symptoms in primary care (Mitchell et al., 2011). The
lengthy process of neuropsychological testing and brain scanning was considered
irrelevant and stressful, given the mild cognitive changes the PwMCI was
experiencing. The suggested improvements included being given more information
and follow-up appointments to discuss concerns; people felt they were diagnosed and
then left to cope alone, with many finding information for themselves on the Internet
(Dean et al., 2014).
This research provided new information about how PwMCI and their families
experience the diagnostic process, but as this is the only study of this kind it is
important to investigate further. Different memory clinics diagnose MCI in different
ways (Dean et al., 2014), meaning the experiences reported here are unlikely to apply
to different areas. The participants were all recently diagnosed with MCI, and therefore
the needs of those who are “caring” for someone who is further along the MCI journey
would be important to understand.
Rationale for the current research
Having discussed the existing literature it is important to identify the need for further
research as the rationale for the current study. As noted, there are gaps in our
knowledge about how people felt about the process of their relative receiving an MCI
diagnosis and the impact this has on their later coping. There are such large variations
noted in how people understand MCI that it is important to gain further insight into

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how the perception of the diagnosis affects coping. If the experience of the diagnostic
process itself is better understood, services could be better equipped to provide more
appropriate care and support for relatives. It is important that research in this area
continues to grow, especially given the likely increase in diagnosis rates as the “at
risk” population grows in size (Prince et al., 2014). The GP targets for memory clinic
referrals in England as part of the ‘Challenge on Dementia 2020’ (Department of
Health, 2015) may lead to higher numbers of people being referred and diagnosed with
these milder difficulties.
Little is known about the support needs of people who live with someone
diagnosed with MCI, what might ease their transition into caring and help them
maintain their existing quality of life. As people age they rely more on spouses and
very close family and friends in order to maximise pleasurable social interaction
(Carstensen, 1995). Family relationships tend to remain a stable feature of social
support throughout the lifespan, becoming especially important for older people as
friendship networks shrink (Wrzus et al., 2013). People’s daily lives can be affected by
even minor changes to the person they knew, hence it is vital to understand the impact
of MCI on family networks; interventions at this early stage could ensure families stay
together for as long as possible. Reducing the stress and burden on relatives would not
only improve quality of life for families and PwMCI, but also keep people living well
in their own homes for a longer period of time.
Aims and research question
The current research aims to examine the perspective of family members of someone
diagnosed with MCI. Specifically, the research question will be: what is the
psychological impact of having a family member diagnosed with MCI? The research

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will focus on how people experienced the diagnostic process, how people identify with
the role of ‘carer’, what impact the diagnosis has had on their relationships and how
people cope with the uncertainty surrounding MCI.
METHOD
Design
The research design was qualitative, using an inductive thematic analysis (TA)
approach to explore people’s experiences of having a family member diagnosed with
mild cognitive impairment (MCI). This approach was chosen to allow for an
identification of patterns within and across the participant group. Given that the
research question is broad and focusing on a fairly new area, TA was felt to be the
most appropriate methodology, to allow for a more in-depth exploration of individuals’
experiences and opinions of MCI and its’ impact. It allows for more flexibility in
analysis than other methods that are governed by theoretical backgrounds; TA allowed
the data to be viewed without any a priori templates or with a particular theoretical
interest in mind. Analysis allowed themes to emerge from the data, rather than being
guided by a specific theoretical perspective (Braun & Clarke, 2006).
Ethical approval
The research was given ethical approval by the NHS Research Ethics Committee East
of England- Cambridgeshire and Hertfordshire, and the University of Surrey Faculty of
Arts and Human Sciences Ethics Committee (Appendices A, B and C). Research and
Development approval was gained from two NHS Trusts in England (Appendices D
and E).

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Participants
The sample of seven family members of PwMCI was recruited through three memory
clinics in the south of England, chosen as a result of the lead clinical psychologists
highlighting their interest in helping the research. All participants were recruited from
one research site, as two sites did not yield any responses. Participants were English-
speaking adults who identified themselves as a family member of someone diagnosed
with MCI, who had adequate hearing to participate in an interview and who were
willing and able to discuss their experiences. The relationship that participants held
with the PwMCI was not controlled for, and there were no age limits or gender
specifications, as a way to increase the pool of potential participants that could
volunteer.
The sample consisted of 4 females and 3 males who identified themselves as
spouses (n=4) and offspring (n=3) of PwMCI. Mean age of participants was 64.7 years
(range 43-79 years) and all were of white British heritage. The mean length of time
since their family member was diagnosed with MCI was 7.42 months (range one to
fourteen months) prior to the research. Table one below outlines the participant
characteristics.
Table 1: Participant characteristics

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Participant Age Gender Relationship to Time since

PwMCI diagnosis
A 78 Female Wife 1 month
C 43 Male Son 10 months
D 74 Female Wife 9 months
E 72 Female Partner 6 months
F 54 Male Son 6 months
G 53 Female Daughter 6 months
H 79 Male Husband 14 months
The diagnostic processes for participants’ relatives were generally the same.
This involved an initial GP consultation, referral to the clinic and several appointments
with a psychiatrist who collected background history, completed a thorough
assessment of current concerns and administered a short memory screen
(Addenbrooke’s Cognitive Examination-III; Hsieh et al., 2013). Two participants
noted that their relative also underwent neuropsychological assessment to confirm the
MCI diagnosis, an additional 3-4 hours of assessments. The diagnosis was fed back by
the psychiatrist; there was variation in whether individuals were offered follow-up
appointments or whether they were discharged back to their GP.
Recruitment strategy
Advertisements were placed in waiting rooms and clinic spaces of three memory
clinics (Appendix F), aimed to increase the likelihood of people volunteering to take
part. Participants were recruited via opportunistic sampling. A notable downside to this
method is the lack of control of participant characteristics, leading to a more varied
sample than if potential participants had been approached more directly. The adverts
requested for “family members” to volunteer; although this could have been made

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more specific, for example by requesting only partners of PwMCI, it was kept as such
to allow for a heterogenous sample, as it was hoped this would result in a wider range
of ideas and themes. Given the relatively short time span for recruitment, this wider
recruitment guide increased the likelihood of sufficient participants being recruited
within this allocated time.
Potential participants collected a Participant Information Sheet (Appendix G)
and contacted the researcher to register their interest in taking part. A reward was
offered to participants in the form of a chance to win a £50 voucher for a shop of their
choice, funded by the research budget. The participant was chosen at random after data
collection was complete, whilst ensuring confidentiality was upheld.
The optimal recruitment target for the study was ten participants, which is
suggested as a solid basis for sufficient data with which to conduct a thematic analysis
(e.g. Braun & Clarke, 2013). If it had been possible, recruitment would have
continued until ten participants volunteered; however, given the time constraints of
university deadlines, recruitment was halted after seven individuals volunteered.
Despite being below the target, this number was deemed sufficient to carry out a
thematic analysis, based on the recommendations of Braun & Clarke (2013), who
suggest a minimum of six individuals. These recommendations are based on sufficient
data being produced by the interviews conducted, for example by ensuring they are
long enough to provide in-depth, detailed information about the individuals’
experiences. They also suggest that six is the minimum number required to reach data
saturation, as five would not provide sufficient evidence that all the themes have been
identified. The researcher therefore aimed for the interviews to be roughly one hour in
length, with prompt questions to gather as much information as possible, to increase
the likelihood of sufficient data being gathered.

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Data collection
Participants were sent a written consent form (Appendix H) at least one week prior to
the interview to allow time to consider all the information. Informed written consent
was gained from each participant prior to the interviews. Participants right to withdraw
without this impacting on their relatives’ future care at the memory clinic was
thoroughly explained, as was the confidential nature of the research.
Semi-structured interviews were conducted with participants in their own home
(following the Trust’s lone working policy safeguards, available upon request), or in
the memory clinic. The audio-recorded interviews lasted between 45-90 minutes and
were conducted by the doctoral-level researcher.
Interview schedule
The interview schedule included five broad questions developed by the researcher with
the assistance of the research supervisor, based on gaps in existing literature of the
family experience of MCI (Appendix I). Service user consultation provided feedback
on the appropriateness of the questions, however none of those consulted were
themselves in carer positions at the time. The questions were open-ended to facilitate
natural, open conversation, with different topics of interest used as prompts. Questions
were used flexibly to help develop a rich account of people’s experiences.
Data analysis
Thematic analysis was carried out using the Braun and Clarke (2006) guidelines
(Appendix J). It was important to acknowledge researcher assumptions during
analysis; the researcher was coming from the perspective of a white British female
with experience of caring for a family member with a different cognitive disorder. The

20
experience of attending memory clinic assessments as a relative may have influenced
the analysis, for example finding data that fit the same perspective. Supervision and
regular reviews of the analysis helped to ensure that interpretations were closely
reflective of the data and increased the rigour of the process (see Appendix K for more
detail).
Interviews were transcribed verbatim and identifiable information was made
confidential through the use of pseudonyms (see Appendix L for a transcript extract).
Transcriptions were read several times to allow familiarity with the data, which
generated an initial list of ideas about the contents. There was a critical realist stance to
analysis (Gorski, 2013); it was assumed that the experiences shared by participants
represented their construction of their own reality, directly reflected in the words used
in their interviews. The ways in which language was used to construct reality was not
analysed. This led to the development of primary codes in the margin of the typed
transcripts, focusing on the semantic content (see Appendices M and N for coded
transcripts). Secondary codes were generated for the data, offering a more
interpretative view, trying to capture what the participants were trying to explain about
their experiences. This tried to closely reflect what the researcher interpreted as the
meaning of the data, without over-interpreting and diverging from the content.
The codes were brought together and arranged into broader themes, using
thematic maps to help guide organisation (Appendix O). At each stage, the emerging
themes were discussed and refined, to assess whether some codes should be split up
into separate themes or whether some could be collapsed into one another if they
explained similar phenomenon. The research supervisor and a qualitative researcher
regularly reviewed the process to ensure the themes accurately represented the data
and increased the scientific rigour of analysis. This also helped ensure that the data

21
were being analysed rather than simply reported and paraphrased, a common difficulty
when completing TA. Themes were compared against the original data set to confirm
that they reflected all seven interviews, giving an overall description of experience.
This led to the development of four major themes and 14 sub-themes (Appendix P).
FINDINGS
Thematic analysis revealed four major themes across the data: I- The ups and downs of
the diagnostic process, II- MCI is not a clear concept, III- MCI has made the future
uncertain, and IV- Changes are coming. These are presented narratively below, with
the final thematic map in Figure 1.
Figure 1. Thematic map
Needing
appropriate
The ups and preparation for
downs of the the process
diagnostic
process
MCI is a relief
when you are MCI is not
expecting worse a clear
concept
Empathy from
clinical staff
There is a lack of
information about
Issues of informed
MCI
consent and an
ambiguous diagnosis
Will MCI What is the

progress to purpose of Issues of
dementia the MCI informed
diagnosis consent
Coping in the
MCI has face of
made the uncertainty
future
uncertain
Anticipation of
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1. The ups and downs of the diagnostic process
This focused on family members’ experiences of going through the diagnostic process
itself with a relative. People spoke of the ease of the process, had positive and negative
evaluations of the memory clinic and a sense of relief in being given a diagnostic label
to pin their concerns on.
1.1 Empathy from clinical staff
People explained that the ease of the process and the attitudes of the staff gave them a
positive experience of the process overall, despite long waits for appointments. The
doctors were knowledgeable, professional and calmed people’s anxieties.
“I thought the process was very… easy… I admired the tactful, upbeat way she
(doctor) managed everything… she was very positive” (Ann).
“It took time waiting for an appointment to see a psychiatrist but… I thought
overall it was very straight forward, very good…” (Emma).

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Being included in appointments helped people understand MCI and was seen as
acknowledgement of their concerns.
“Professionals were supportive… and interested in my opinion. It was helpful
that… I could be involved in the appointments, I thought I might have been
excluded” (Doreen).
1.2 Positive effects of diagnostic labeling
There was an overwhelming sense of relief in response to the diagnosis, as the changes
seen had initially been interpreted as dementia. It helped explain symptoms and
allowed people to acknowledge that something was actually happening.
“I think the fact that we were expecting that it would be something far worse…
it's not "oh no it's MCI", it's "it's MCI, thank god it's nothing worse" (Fred).
“We could have been heading for a diagnosis of Alzheimer's… the fact that it
was just mild cognitive impairment was… a huge relief” (Grace).
For some, the diagnosis allowed both parties to share an understanding of what was
happening. Having a specific name for the problem allowed people to pin their worries
on to that rather than imagining the worst. Some participants expressed gratitude for
having follow-up appointments after the diagnosis.

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“Our views have come together… more since the diagnosis, I recognise that he
does have a problem… rather than being more dismissive” (Emma).
“The ongoing 6 monthly consultations and check ups… it's nice knowing that
it's being monitored” (Fred).
1.3 Needing appropriate preparation for assessments
There were some notable downsides to people’s experiences. It was highlighted how
important it would be to inform patients and families of the nature of the appointments
beforehand, as people might not anticipate the content of assessments:
“I think I found it emotionally quite tough… there was some very sad stories in
there of him dealing with things… it was quite harrowing... there was a lot of…
things that were covered that I hadn't anticipated” (Colin).
Individuals would have valued time alone to speak to the doctors, as they felt
prevented from talking openly in front of their relative.
“I might want to talk without mum there, as often it's quite difficult when
you're in the room with mum in raising issues because… they could be quite
sensitive” (Grace).
2. MCI is not a clear concept
This theme represents important arguments about the nature of MCI as a diagnostic
entity; due to a lack of clear information provided, people interpreted MCI in different

25
ways. There were also concerns about why it exists as a diagnosis when it is so
ambiguous.
2.1 There is a lack of information about MCI
Unfortunately, people expressed concern about how little information they received
about MCI from the memory clinic.
“By way of explanation I don't think I ever had any, I've just sort of pushed it
together myself” (Emma).
“We were given a sheet about what the cognitive impairment is… other than
that there was probably a lack of information we could hold on to” (Henry).
There was confusion about the basic nature of MCI and people had developed
individual ways of understanding it. Colin and Fred’s different opinions illustrate this:
“Dr A explained it all to us and plus we got all the printed paperwork…
basically that it's old age, natural memory deterioration” (Fred).
“I have found that it's easier to explain to people if I call it mild dementia,
people understand that... not everyone understands MCI” (Colin).
2.2 Issues of informed consent and an ambiguous diagnosis
Participants were not wholly clear on why referrals were made and people spoke about
GP’s “persuading” relatives to have an assessment, which raises questions about fully

26
informed consent to this process. This suggests people may enter the process without
being thoroughly informed of the implications.
“I think it was a screening thing that they did at the GP's, I'm not sure how it
(referral) came about… I had to explain it before he came… I still don't think
that he fully understands it. I just told him that he's alright” (Colin).
“The GP found it quite a job persuading her that she needed to go, then she
said she would go… then in the run up… she wasn't keen to go” (Grace).
Participants highlighted concern about the purpose of the diagnostic process and
whether MCI should be a diagnosis in itself; people felt it raised as many questions as
it answered.
“(What is) the point of the whole thing… it rules out dementia, but maybe only
for a short time, and if you just continue to stay at this level… then why go
through all of that… I wonder why there exists such a thing when it generates
more questions than it answers…” (Henry).
3. MCI has made the future uncertain
There was an important theme around people being left managing a large amount of
uncertainty for the future following the diagnosis. There were four sub-themes
focusing on the difficulty of coping with uncertainty, resilience in the face of this
uncertainty, and concerns about future support and progression of MCI.

27
3.1 The difficulty of coping with uncertainty
The participants spoke about different elements of the difficulty in coping with the
uncertainty of MCI. People related to the uncertain outcome in different ways. Grace
spoke about increased sadness and anxiety since the diagnosis:
“I go through phases when I do get very upset about it and worry… if there's
the odd thing where mum says or does something a bit odd, I think "is it getting
worse, is it getting worse"”.
There was a sense that people were finding it hard to accept the changes seen, as their
normal coping strategies were compromised.
“If I can talk to people about things it helps me feel better... I couldn't do that
so easily with MCI, I'm not sure I really knew what to… say to (friends)... It's
quite a lonely place to be as I can't talk to Derek about it” (Doreen).
Some participants noted that the difficulties in coping with uncertainty were
exacerbated by their relative finding it hard to accept their need for support. Grace
spoke about wanting to talk to her mother about her own increased need for support
with the uncertainty now facing her.
“I (want to) talk to mum about being able to talk to others… try to convey to
her that I need that support… because it's really hard for me, I need that
support in order to stay strong so I can support her” (Grace).

28
There was an important discussion around emotional support services to help families
cope when a relative is diagnosed with MCI, which people suggested would have been
helpful in their journey towards acceptance.
“(Counselling) would have been really helpful… you can read about it, but
sometimes with the feeling side of things, it would be nice to talk that through
with somebody” (Grace).
3.2 Coping in the face of uncertainty
Despite the struggles that people noted in coping and acceptance they were trying to
stay positive. People had different coping styles, such as sharing their worries with
those around them.
“A problem shared is a problem halved, which is very true… just talking to
someone about a problem takes half the problem away. You know you're not on
your own” (Fred).
If the PwMCI was able to acknowledge their difficulties, participants were more able
to adjust, and normalising the difficulties was a common coping strategy.
“She is thankfully quite aware of her memory changes which probably makes it
easier for me… she is happy for me to help” (Henry).
“If he does get muddled it's usually because he hasn’t slept well or he's tired.
There's usually a reason for it… It’s nothing I worry about” (Emma).

29
Some people had a more fatalistic approach to uncertainty and focused on the idea that
worrying about an uncertain outcome is pointless.
“If I let myself… I could worry but I don't, I just don’t let myself, it's pointless.
Whether that's a bit short sighted of me… I don't see the point in getting frantic
over it at the moment when things are… absolutely fine” (Emma).
It was easier not to focus on worrying but try to accept the uncertainty and manage
events as they arise in future.
3.3 Anticipation of future support and care
Throughout the data participants expressed concern about a decline in their relatives’
abilities, potentially leading to formal support and care. For some, this was causing
anxiety, as the thought of having to recruit extra care in future was associated with
other difficult emotions.
“I'm so reliant on Derek, that when he goes I don't know how we'll cope. It's a
very scary thought, having to give up your independence and rely on people
you don't know” (Doreen).
The diagnosis had spurred some people into making plans for their relatives’ future, a
way to partially offset the uncertainty that was now surrounding them.

30
“We’ve now got a Lasting Power of Attorney so I do have full control over
everything if it becomes necessary… mum's probably in the best situation she
could be in” (Fred).
In contrast, there were noted frustrations at the fact that uncertainty prevented people
from making plans. This dichotomy most likely reflects different attitudes towards
uncertainty, with some people feeling quite helpless to make any productive plans in
the face of an uncertain future.
“It will become a very complex thing… You have to think about all the
financial and inheritance implications… We cannot do that until the stage
when it becomes… fairly severe. You cannot have plans in place… with
reference to something as vague as MCI” (Ann).
3.4 Will MCI progress to dementia?
Due to the noted different interpretations of MCI, there were different ideas about
progression. For some, dementia was the inevitable end point of MCI.
“My impression was that it isn't something that has a solution to it, no
medication… so it will just get worse and worse until the end… when the
dementia thing comes” (Doreen).
For others, MCI represented the natural ageing process and was not associated with the
negative connotations of dementia. Participants expressed a wish for their relative to

31
experience no further decline, illustrating how people experienced the uncertainty; they
did not know what the outcome would be and so they could only hope and wish.
“I am hoping beyond hope that she is one of the ones who just stays at this
level… because not everyone develops dementia from this… I am wishing that
for us” (Henry).
People had questions about how to slow down the progression of MCI, but felt
helpless as to how to do this, leaving them worrying for the future.
“I don’t really know if they can do anything spectacular to halt it… so I’m
really worried about what we can be doing to lower the risks of it getting
worse” (Ann).
4. Changes are coming
This theme represents changes people anticipated or had already experienced in terms
of relationships with the PwMCI and wider social friendships, normal daily life and
roles. There were thoughts about how people relate to the idea of being a carer, and
current and future losses.
4.1 Anticipating change to relationships
People were on different trajectories along the path of relationship change as a result of
MCI, an important part of which was change to social relationships following the MCI
diagnosis. Some did not acknowledge change, while others noted quite marked

32
differences, for better and worse. There was a tendency for some to make more effort
with their relative:
“It’s brought us closer together, we don't know what is around the corner…
what's ahead so… spending a bit more quality time together” (Grace).
Others found that the changes brought about by MCI were causing them to act
differently with their family member, changing the relationship they had always had:
“I'm not such a jolly person, I'm not as… pleasant a person… I should be more
patient, sympathetic and tolerant… but I'm not, it still winds me up when I
think that he's not being the best that he could be” (Colin).
An interesting part of this was the different causes of relationship change, for example
misunderstandings causing tension. There were discussions about guilt relating to
feelings of failure to do enough for their relatives or failure to do as the PwMCI
wished.
“I do always feel a sense of guilt that I don’t visit enough, phone enough, see
him enough or do enough with him” (Colin).
Finally, some people highlighted interpersonal tensions caused by a lack of insight
from the PwMCI, in terms of how to manage a different viewpoint when their relative
did not acknowledge that they had a problem.

33
“It was difficult to broach with her and every time I tried to tactfully say
something she would get really defensive. I had to end the conversation before
we came to blows” (Grace).
An important aspect of relationship change concerned people’s social networks. In
different ways, people were trying to make the most of their friendships, for support,
distraction and as a way to ‘carry on as normal’.
“I do make an effort to write to people… I need to do this, I’m not going to just
retreat into a shell or complain… I need to see people more if anything” (Ann).
4.2 Real and imagined loss
The MCI diagnosis led people to talk about losses that had happened and that they
foresee in the future, centred on losing the person that they loved, the relationship they
relied upon and the future they had imagined.
“If you let it be, it is potentially very upsetting, as you can no longer rely on
the sort of relationship that you’ve always had with that person” (Ann).
“I imagine… this thing taking over him until he isn't really him, can't do what
he used to do, loses those bits of himself. It is just the worst thought possible”
(Doreen).
For others, it was a loss for their whole family network, as wider family lost out on a
certain kind of relationship with the PwMCI.

34
“The days of… holidays abroad with him are done now… it's a shame the
grandchildren will miss out with the experience of going away with
granddad… it makes me really sad” (Colin).
4.3 Demands on time and resources
People were experiencing different levels of complication to their own family life as a
result of their relative having MCI. Participants noted having to take time away from
family in order to help the PwMCI, assisting with more appointments and trying to
shield others from their own stress.
“(Our daughter) is shielded from this… I don't like to trouble her with things…
I really hope it doesn't affect her” (Doreen).
“I'm often borrowing time from work. If I'm near where he is I borrow an
hour… I have to take that time back… in the evenings… or doing weekend
work, then I'm stealing the time from my family… That is crap” (Colin).
Others noted only minimal differences to family life:
“Our children help out when we see them, but they usually do anyway, it isn't a
new thing… that hasn’t increased since the impairment” (Henry).
4.4 Minor role changes are manageable

35
From the role changes people described, there was a sense that these had been fairly
well incorporated into everyday life.
“The only difference is that… I'll say "oh don’t forget to do this"… being
mindful… and trying to pre-empt any important things that might be forgotten”
(Fred).
This easy adaptation is possibly reflective of the mild level of impairment experienced
by PwMCI. However, some individuals did note changes that might be more advanced
than would be expected from MCI, pointing to the heterogeneity of the diagnosis.
“When it comes to doing… something that needs careful attention, I need to do
that now, because it’s hard for him… if he were to do it… he is inaccurate, he
is forgetful or careless” (Ann).
4.5 I am not a carer yet
It was clear that no one was yet relating to the idea of being a carer for his or her
relative due to MCI but people acknowledged that this might be their future if it were
to progress.
“That to me is something that will happen far down the line. I am definitely not
at the point of being a carer now” (Doreen).

36
People held different opinions about the impact of caring in the future, which could be
reflective of the different types of relationships. Children of PwMCI spoke of worry
for future burden, whereas partners seemed happier to take on a carer role.
“What if mum gets really ill and needs looking after, how am I going to
manage? I… felt a real burden about that, the burden would all be on me”
(Grace).
“I would do as much of the caring for her as I could… I don't worry about
having to do that side of things” (Henry).
DISCUSSION
Summary and discussion of findings
The aim of this research was to investigate the psychological impact of having a family
member diagnosed with Mild Cognitive Impairment (MCI). The findings generally
support those found in the limited existing literature on relatives’ experience of MCI
and add valuable new insights to this area of research.
Some of the most important findings from this study relate to how families
experience the diagnostic process, as to the researcher’s knowledge there is only one
previous study looking into this (Dean et al., 2014). Overall, people experienced the
diagnostic process in a positive light, stemming from the professional and empathetic
clinicians within the memory clinic and the ease of the process overall. Professionals
were skilled in containing people’s anxieties and provided as clear an explanation
about MCI as possible. This is a contrast to previous findings, where advocates

37
reported difficulties in getting the diagnostic process started and feeling dismissed
during appointments (Dean et al., 2014). This could be explained by the fact that the
studies recruited from different clinics; it seems that the empathy and professionalism
of clinicians is the important factor in how relatives experience the diagnostic process,
rather than the actual assessment process itself. The follow-up appointments were
helpful in reducing anxiety for participants; however, not all participants reported
having access to these, hinting at variety in the diagnostic pathway even within one
memory clinic. There was enormous relief that the diagnosis was not one of dementia,
as this was the initial explanation people had for the symptoms. This could be due to
the fact that dementia is better understood in the general population; when people
notice changes in an older person, they are more easily attributed to dementia
(Alzheimer’s Society, 2016).
An important downside of the diagnostic process was the lack of clarity about
what the assessment process entails prior to the appointments, a new idea in the
literature. Participants were surprised by the fact that they were far more in-depth and
personal than expected. Another difficulty was not being given the chance to discuss
their concerns with a doctor privately, supporting previous results where advocates
reported being uncomfortable with ‘reporting’ on their relative in a non-confidential
manner (Dean et al., 2014). Family members are a valued part of the diagnostic
process, offering an important opinion about the changes seen to the PwMCI; this
study has shed new light on the ways in which relatives experience the diagnostic
process.
The second theme focused on the ambiguity of MCI as a concept. In keeping
with previous research, there was a concern from participants about the lack of
information about what MCI actually is, which impacted on how they interpreted the

38
diagnosis and subsequently their later coping. Participants were provided with the
same MCI factsheet (Alzheimer’s Society, 2015) but had come to different conclusions
about MCI, with some seeing it as ‘normal ageing’ and others as ‘early dementia’.
These diverse interpretations are likely to stem from the information presented by
clinicians within the diagnostic appointment, and the fact that a lack of information
forced people to come to their own conclusions. Previous literature highlighted similar
concerns about the lack information about MCI (Dean et al., 2014), and people having
to do their own research to try to understand it (Blieszner et al., 2007), suggesting
there have been no major developments in this area. As different interpretations have
markedly different implications, they are likely to play a large part in how participants
cope with MCI. Indeed, participants who interpreted MCI as part of the normal ageing
process expressed fewer worries currently and for the future. There was also a lack of
guidance for families in how to manage the changes they were seeing, which has been
previously linked with increased stress for family members (Blieszner et al., 2007).
People queried how their relative had been referred to the memory clinic,
highlighting ethical concerns regarding informed consent about entering the diagnostic
process. As far as is known, this issue of consenting to the diagnostic process has not
been previously highlighted in research, giving unique insights into some of the
difficulties PwMCI and their families experience on this journey. As the research
focused on the family member perspective, one explanation could be that some
relatives were not involved in the referral process from the very beginning; however,
this is unlikely as all participants mentioned initially attending a GP appointment with
the PwMCI.
There were arguments about why MCI exists as a diagnosis when there is such
variation within the one diagnosis. Although not a specific idea within the existing

39
literature, there are hints at similar arguments in previous studies. For example, Dean
et al., (2014) reported advocates’ concerns at their relative receiving a diagnosis and
families then being left to manage this without further support. This information adds
significant knowledge to our understanding of how people feel about the diagnosis.
Unlike with a diagnosis of dementia, relatives of PwMCI are less able to access formal
support services, their relatives do not benefit from treatment to slow the progression
and they are often discharged from memory clinics without follow up appointments
helping to buffer people’s anxiety. The findings raise concerns about whether it is
acceptable to leave families without information once a diagnosis has been made, and
whether people should be put through these processes when there is no clear way
forward for them at the end.
Throughout the data, there were discussions about how uncertainty had
increased since the MCI diagnosis. There were clear individual differences in people’s
relationship with uncertainty; some acknowledged how hard it was to cope with and
others found it better to ignore the worry. The uncertainty of MCI is a significant
theme in the existing literature, and the current research adds further weight to the idea
that the uncertainty adds significant stress to people’s lives, supporting research such
as Blieszner et al. (2007), who found that ambiguity made it harder for families to
cope. Ambiguous loss (Boss, 1999) suggests that vague situations are among the
hardest to cope with, as they test psychological coping strategies. This idea resonates
with the current findings, as it was the unknown elements and questions for the future
that people were finding hardest to manage. Uncertainty had compromised people’s
usual coping strategies, such as being unable to discuss with friends, and had created
barriers in relationships, preventing people from confiding in the PwMCI about their
worries. There seemed to be particular difficulty in managing the initial relief people

40
experienced that the problem was not dementia with the uncertainty they were left with
that MCI could become dementia in the future. These findings illustrate an area of
concern unique to relatives of PwMCI that can start to challenge people’s resilience
from the very beginning of cognitive impairment.
People had understandable concerns about needing support for their relative in
the future but some were unsure how and when to put these plans into place. There
was a tendency for some to put off planning for the future as they felt they could not
do anything productive in the light of such ambiguity. Similarly to previous research
(Adams, 2006), this refusal to make plans could be one way people were taking control
over an uncontrollable situation. All participants spoke about a ‘hope for no dementia’
for their relative, a wish that reflects findings from China and Taiwan (Kuo & Shyu,
2010).
People were experiencing both positive and negative changes to their
relationship with the PwMCI, due to personality changes, the pressure of increased
responsibilities or making a stand in the face of uncertainty. Research indicates that
MCI can in fact cause quite marked changes to interpersonal dynamics (Pasymowski
et al., 2013), which would impact on relatives’ abilities to cope, as they can no longer
rely on that relationship as they used to. In a similar way to research by Woolmore-
Goodwin et al. (2015), participants wanted to shield the PwMCI and extended family
members from their own emotional reactions to MCI, possibly reflective of a coping
strategy to ‘keep going as normal’. One element of relationship change was the
feelings of guilt that arose due to people not feeling able to meet the expectations of
the PwMCI. Guilt is common in those who care for someone with more advanced
cognitive impairment (Alzheimer’s Society, 2012) and this suggests that even at the

41
very mild stages, people begin to experience the same emotions associated with having
a relative with dementia.
There was an interesting idea that developed around the interpersonal tensions
caused by different perspectives of MCI, specifically a seeming lack of insight on
behalf of the PwMCI. Family members were finding this disparity between opinions a
source of conflict, in keeping with prior research that showed burden on relatives was
greater when the PwMCI had less insight into their difficulties (Frank et al., 2006).
There have been mixed findings in existing literature as to how MCI impacts on a
person’s social relationships; the current research found that people had a tendency to
value their friendships more. In a similar way to Davies et al. (2010), people used
friendships more for social support and distraction away from the challenges
associated with MCI. This is an important finding given the nature of older people’s
social networks, which tend to be made up mostly of very close family and friends
(Carstensen, 1995). If those supporting PwMCI continue to value their social support
networks, this could allow them to continue being a source of support to the PwMCI.
There were discussions of loss throughout the data, which was particularly
related to a loss of the relationship and person they loved, attributed to progressive
cognitive decline. People spoke of their relatives being taken over by something,
suggesting that for some, MCI represented a gradual change until dementia causes that
person to become someone else. Loss has been highlighted in existing literature, as
PwMCI move further away from the person they were (Lu & Haase, 2009), suggesting
that even at the mild stage, relatives of PwMCI begin to anticipate the huge emotional
cost of further decline.
A proportion of the existing literature has found that significant strains are put
on family member’s time and resources, which the current study found to a lesser

42
extent, suggesting the current participants were experiencing more manageable role
changes. The variance of burden placed on participants could reflect differences in
how responsible people felt for the PwMCI, their perception of the level of
impairment, and the amount of support people had with new responsibilities and their
emotional impact. Interestingly, two participants who noted the largest impact to their
normal lives were offspring of the PwMCI, who did not have support of other siblings.
These individuals may have held certain expectations about becoming responsible for
their parents or have been less willing to take on more roles, opinions that might not be
shared by spouses. Although not part of the formal diagnostic criteria, MCI has been
shown to cause people to be less able to execute their ADL’s, leading to heavy reliance
on family members and subsequent decreases in quality of life for relatives (Blieszner
& Roberto, 2010; Lu & Haase, 2009; Roberto et al., 2011). This serves to highlight the
issues of heterogeneity within MCI diagnoses, as there is huge variance in the reported
skill losses within the literature.
One clear finding from this research was the fact that participants were not
identifying as ‘carers’ at this point. This was interesting, as services can often place
people in a carer role without acknowledging that this may not be appropriate for that
person. This finding adds to the ideas of Roberto et al. (2011) who found that spouses
were along different trajectories towards caring, depending on the level of cognitive
impairment. The current participants spoke of caring “in the future”, which goes with
the idea that becoming a carer is a developmental journey, rather than something
experienced by relatives from the beginning. This is a new finding in the literature and
suggests that impairment needs to be more significant than that found in MCI for
people to identify as a carer. It is argued that stress occurs in caregiving when the
caring reaches beyond that seen in daily relationships, and beyond that which people

43
can cope with (Pearlin et al., 1990). As participants were not yet identifying as carers,
but did acknowledge heightened levels of stress, there must be an element of MCI that
causes stress even before people fully become ‘carers’. It could be argued that the
ambiguity of MCI is one of the main causes of stress in this group.
Limitations to the current research
While there are several important findings from this research, it is essential to note
some limitations. The inclusion of more than seven participants could have given a
richer data set and a more nuanced understanding of the impact of MCI. Research
suggests that a minimum of six participants is adequate for thematic analysis (Braun &
Clarke, 2013); therefore while seven participants was deemed adequate, it would have
been beneficial to have additional participants to add further weight to the findings.
The interviews conducted were sufficiently long to provide an acceptable level of
detail and depth of knowledge, but the small sample limits how generalisable these
experiences would be to others in a similar position. The point of ‘data saturation’ can
be an appropriate end to recruitment for thematic analysis (e.g. Guest et al., 2006),
which can be found when no new information is being revealed with additional data. It
could be argued that additional data might have been found with further participants,
yet saturation appeared to have been reached after collection of data from five
interviews, as no new themes or sub-themes were highlighted from the final two
participants data.
The chosen sampling method is likely to have resulted in more variance within
the characteristics of the participants, as factors such as gender, relationship to the
PwMCI and time since diagnosis were not controlled for. A more direct sampling
method, such as sending information to people highlighted as a family member of a

44
PwMCI, could have allowed the researcher to control for these factors more
thoroughly, resulting in a more homogenous participant group.
The participants were all from a white, British background. Inclusion of a more
diverse range of participants could have revealed interesting variations in how different
cultures cope with cognitive impairment and uncertainty. The sampling method used
could suggest that these individuals are more likely to volunteer for research than
others from more diverse backgrounds; alternatively, having discussed the lack of
diversity with the psychologist within the memory clinic, it is likely that this reflects
the make up of the local area from which participants were recruited. As all
participants were recruited from one memory clinic, the results may not be applicable
to other clinics in different areas. Some participant interviews were conducted within
the memory clinic in which their relative receives care; although it was made clear that
the research was not linked with the clinic and would not impact on care, some
participants may have felt more obliged to report positive experiences as a result.
Looking more closely at the participant group, the inclusion of both spouses
and offspring could have prevented the results showing distinct differences between
the experiences of the two groups. Although analysis found similarities across the data,
it would be interesting to look further into both groups separately, to get a fuller
understanding of the different ways MCI has affected life within a more homogenous
sample. The diagnoses of MCI had been received between one and fourteen months
prior to the research; the inclusion of such a broad time span means that the PwMCI
could have been experiencing different levels of cognitive impairment, which would
impact on participants to different amounts. However, the themes suggest that people
were all experiencing similar difficulties to varying degrees, suggesting that the nature
of difficulties associated with cognitive impairment are similar irrespective of the level

45
of impairment. Despite this, the variation within the sample could have impacted on
how clearly the results were able to represent shared experiences across all the
individuals.
While it is not a limitation, it is important to consider why only one of the three
memory clinics yielded participants. At the time of recruitment, the researcher was
undertaking a clinical placement within this memory clinic; it is likely that this
impacted on recruitment in terms of keeping the doctors informed of the study, having
a greater presence within the clinic to talk to potential participants face to face and
ensuring that the advertisements were posted in clear places.
Implications for clinical practice
This research has highlighted several important learning points for working clinically
with relatives of PwMCI. Offering families a chance to be seen alone without the
PwMCI would allow a safe space to discuss concerns; this would reduce conflicted
feelings when participants had to do this in the presence of the PwMCI. This could
also offer the chance for emotional support from staff, something that participants felt
would have helped them in their adjustment. The fact that the effects of mild cognitive
changes are compounded by lower insight on behalf of the PwMCI suggests that the
provision of post-diagnostic education to PwMCI could be a helpful way to reduce
carer stress. Finally, clinicians should be more aware that relatives are not necessarily
identifying as carers at this stage; having conversations with relatives at the beginning
would help clarify this and avoid relatives being placed into this formal role before
they are ready.
One major implication concerns whether the benefits of receiving a diagnosis
of MCI outweigh the costs of increased uncertainty and anxiety for relatives

46
afterwards. Participants noted initial relief followed by on-going stress about the
future, suggesting the benefits of a diagnosis might not be felt in the long run. This
could impact on their ability to support the PwMCI; research suggests that stress in
relatives can lead to earlier institutionalisation of the person with cognitive difficulties
(e.g. Pearlin et al., 1990). There are therefore important questions about whether MCI
should be regularly screened for by GP’s or diagnosed; people could be monitored by
services without having this formal diagnosis placed on them, reducing the impact of
uncertainty on families.
This study raised questions about the clarity of the diagnostic process. A simple
improvement could be to offer an explanation of the appointments and the process on
clinic appointment letters; this would allow more informed choices about whether
people would like to have a memory assessment. Furthermore, as referrals often come
from GP’s, provision of education about MCI would increase the understanding of
these difficulties in primary care. GP’s could then help fully explain the process and
the likely outcomes to individuals before they enter the lengthy diagnostic process.
Some memory clinics discharge people following a diagnosis and recommend a
re-referral in one year, while others offer regular follow ups to monitor progress. For
those discharged and left to cope alone, the impact of the MCI is likely to be much
greater on their spouse and family in comparison to those offered on-going support
from services. National guidelines for this process would reduce the variation across
the country, decreasing one element of uncertainty for those involved. If all memory
clinics had the same care pathways there would be more clarity for support services,
helping them to target interventions where it is most needed. People may be more
encouraged to have a memory assessment if they know there would be support
available for them and their relatives at the end of the process. Considering the wider

47
role of clinical psychology, we could be best placed to facilitate discussions between
clinics, charity services and government to help make these pathways clearer and less
anxiety provoking for those involved.
Finally, the availability of information and support services for families
following a diagnosis of MCI is currently limited but would be an important area for
future investment, as people noted how the lack of information was something that
increased anxiety. Having a clearer, earlier route into charities such as the Alzheimer’s
Society could offer comfort to families as they would know support is available if
needed.
Future research
Future research is needed to help clarify the impact of an MCI diagnosis on family
members and what interventions may help their ability to cope with the uncertainty
they are left with. It would be interesting to see whether those from other ethnic
backgrounds share the opinions of the participants in this study, in terms of how they
relate to the idea of being a ‘carer’ for their relative, attitudes towards uncertainty and
the experience of going through the diagnostic process with a relative. It would also be
helpful to investigate the diagnosis of MCI in England; there is very limited research
into how family members experience this process, and it would be beneficial to have a
more in-depth understanding to help make the appropriate changes to clinical work.
Understanding how referrals are made at the point of GP consultation would
help to clarify the concerns about consent to the process, which is important in the
light of increased referral rates. It would be helpful to investigate how the actual
delivery of the diagnosis correlates with understanding of MCI and later coping.
Investigation of the clinicians’ perspective of the diagnostic process would be

48
worthwhile, in terms of how clearly they understand the diagnosis and their thoughts
on how different elements of the process impact on PwMCI and their families.
Attitudes towards uncertainty seemed to affect adjustment and coping, and it could be
interesting to investigate how emotional support following the diagnosis influences
this. Research could look at effectiveness of group support interventions for relatives,
as this would be an efficient way to approach the problem of minimal support services.
Conclusions
The findings of this study indicate that families of those diagnosed with MCI
experience various challenges that impact on their ability to cope. The majority of
participants reported positive experiences within the memory clinic, with some
suggestions made for improving how clinicians involve family members in the
diagnostic process. Whilst the diagnosis was initially helpful, some participants
experienced additional anxiety and stress when faced with the uncertain progression of
MCI. A clear message was that people were not identifying with the role of carer at
this stage, but could see that this might be their future; this provides important
information to clinicians and services, which can place relatives into a carer role when
this might not be appropriate. The study was limited in the number of participants and
their ethnic background; it would be interesting to look into the experiences of people
from more diverse backgrounds to understand relatives’ experiences of MCI in more
depth. Future research is also needed to investigate what support would help family
members’ to cope with the uncertainty of MCI.
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MRP Empirical Paper Appendices
Appendix A: Ethical approval letter from NHS Research Ethics Committee

56

57

58
Appendix
B: Ethical approval for
substantial amendment from NHS Research
Ethics Committee

59

60
Appendix C: Ethical approval letter from University of Surrey

61

62
Appendix D: Research & development approval 1

63
Appendix E: Research & development approval 2
Appendix F: Research study advertisement

64

65
Appendix G: Participant Information Sheet
Participant Information Sheet
The psychological impact having a family member diagnosed

with Mild Cognitive Impairment: A qualitative study
I am a Trainee Clinical Psychologist at the University of Surrey, aiming to carry

out some research as part of my doctorate course in Clinical Psychology.
You are invited to take part in my research study. Before you decide to take part,
it is important for you to understand why the research is being done and what it
will involve. Please take time to read the following information carefully and
discuss it with a friend, relatives or your general practitioner (GP) if you wish.
Please take time to decide whether or not you wish to take part, and contact me if
there is anything that is not clear or if you would like more information.
What is the purpose of the study?

Mild cognitive impairment (MCI) is becoming more widely researched in people
who have received this diagnosis, yet the impact of this diagnosis on family
members and carers is relatively unknown. Someone who has a diagnosis of MCI
may have problems remembering things or thinking about things. This study aims
to find out what psychological effects a diagnosis of MCI might have on those
close to the individual, and what support people feel might be beneficial to help
them cope. This will give us a better understanding of the needs of people who
support those with MCI.
To do this, I will carry out an interview with spouses or close family members of
those who have a diagnosis of MCI. This will involve an audio-recorded discussion
(with consent) about the impact of MCI on their relationship, thoughts about the
future, and what support they received, among other things.
Why have I been chosen?

I am looking for spouses or close family members of someone who has received a
diagnosis of MCI through a memory clinic. You have experienced someone close
to you receiving a diagnosis of MCI, and it would be really helpful if you could
share your experiences with me.
Do I have to take part?

No, you can decide whether or not you want to take part. If you decide to take
part, you will be asked to sign a consent form saying that you agree to participate.
You can change your mind and stop taking part at any time throughout the
process, and you don’t need to give a reason for changing your mind. If you
change your mind after an interview, the information you gave would be
destroyed and not included in the research.

66
If you don’t want to take part, this will not affect the standard of your family
member or spouse’s medical care.
What will I have to do?

If you decide to take part, please contact the researcher. You will be asked to sign
a consent form before starting and to participate in an audio- recorded interview
with the researcher (with consent) discussing the impact that a diagnosis of MCI
has had on you and your family member. The interview will not take place in the
presence of your family member, and it is up to you whether you want to tell your
family member that you are taking part in the research. You will not be made to
discuss anything you do not feel comfortable talking about.
After the study, we will write up what was said in the interview and the actual
recordings will be destroyed. The interview will take place in your home or the
clinic in which your relative was diagnosed; whichever is more convenient for
you. It would take roughly one hour to complete.
Are there any benefits or risks to taking part?

There is unlikely to be any direct benefits to your or your relative’s care, however
people can find it very helpful discussing their experiences with an individual
outside of their family. You may find it upsetting to talk about the experience of
looking after someone with MCI. You do not have to answer any questions that
you do not want to, and can stop the interview at any time.
If you disclose any mental health difficulties such as depression for you or your
family member, advice about how to seek help for this will be provided.
You will be offered the chance of being entered into a prize draw to win a £50
voucher for a shop of your choice, as a thank you for taking part. This will be
selected at random from the pool of other participants who have taken part.
Can I change my mind?

Yes, you can change your mind about participating at any time throughout the
process. Any data you have provided would be removed from the study and not
used for the analysis. This would not affect the care you or your family member
receives.
Will my personal details be safe?

Yes, all the data you give us will be kept completely confidential, in accordance
with the Data Protection Act (1998). Direct quotes will be used in the report, but
will be fully anonymised. Any published research findings will not refer to you by
name or in any other way that could identify you, and the interview recordings
and transcripts will be destroyed after use. The interviews will be transcribed
only by the researcher, increasing your confidentiality.
The data from the interviews will be kept securely for a minimum of 10 years at
the University of Surrey, in line with their Data Retention policy. These would all
be anonymised and you would not be identified.
What will happen to the results of the study?

67
The results will be written up as part of a thesis for the Clinical Psychology
Doctorate programme. The results are also likely to be published in a peer-
reviewed scientific research journal. You would not be identified in the
publication.
Who is funding and organising the research?

The research is being funded by Surrey and Borders Partnership NHS Foundation
Trust. It is being organised as part of the doctoral training in Clinical Psychology
at the University of Surrey.
This study has been reviewed and received a favourable ethical opinion from the
NHS Research Ethics Committee of East England- Cambridgeshire and
Hertfordshire, and the University of Surrey Faculty of Arts and Human Sciences
Ethics Committee.
What if there is a problem?

Any complaint or concern about any aspect of the way you have been dealt with
during the course of the study will be investigated; please contact Polly Pulford,
Principal Investigator at p.pulford@surrey.ac.uk, or my supervisor Paul Davis on
01483 686927, p.e.davis@surrey.ac.uk . You may also contact the Head of School,
Mary John, on 01483 689267.
If you wanted more information about memory difficulties or MCI, please see the
following advisory services:
www.alzheimers.org.uk or phone their helpline on 0300 222 1122
For more information on support for mental health difficulties, please see the
following advisory services:
http://www.mind.org.uk/ or phone their helpline on 0300 123 3393
To highlight your interest in taking part and for more

information, please contact the main researcher Polly Pulford
at p.pulford@surrey.ac.uk, 01483 686927
Trust Headquarters, XXX NHS Foundation Trust

68
Appendix H: Participant consent form

69
Appendix I: Interview schedule
1. What has life been like since X was diagnosed?

 Have there been any changes to your relationship?
 Is there any difference in how you both see the MCI and associated memory
difficulties? For example, do you have a difference of opinion in the severity of
symptoms, or what the person can/ cannot do so well anymore?
 Do you feel you have a different role now, identity as a wife/ husband/ child etc
changed?
 Changes to daily routine?
 What help and support are you getting- formal, informal? Formal support e.g.
paying for a carer, linking with external organisations such as charities, groups at
the memory clinic, psychological therapy… Informal e.g. extra help from family
or friends.
2. What has been the impact on you personally?

 Changes to your own mental health: increased stress- what causes you to feel most
stressed? Sadness in response to the changes seen?
 What elements in particular do you feel impact on your own psychological health?
E.g. is it the role change, depression/ anxiety in the person with MCI…?
 Has there been a change to your understanding of the difficulties since the
diagnosis? E.g. does it help you make sense of the changes you have seen in the
person?
 Uncertainty of MCI label- how does that influence how you adjust? There is an
uncertain progression with MCI, so does this influence your adjustment, does it
make it harder to accept or understand?
3. What has been the impact on your wider relationships?

 Have you received support from extended family or friends?
 Have you been able to fully explain what MCI is to other people?
 Have you maintained links that you had before, e.g. social activities
4. What was your experience of the diagnostic process itself?

 Easy/ difficult to get a diagnosis- did you feel listened to? Was it hard to get seen
in services?
 Delivery of the diagnosis- who did this, what was your experience of that, did you
feel supported?
 Explanations and follow up support given at the time? A good amount of time
spent helping you to understand what MCI is and the progression of this?
5. What thoughts or feelings do you have about the future?

 What do you imagine happening with X’s MCI in the future?
 Uncertainty of MCI label- does this affect your thoughts about what could
happen?
 What help do you imagine you might need, and do you think this will be
available?
 Do you have any fears about what might happen in future?

70
Appendix J: Braun & Clarke (2006) thematic analysis guidelines
Phases Steps within the phase

1. Familiarising self with the data  Transcribing interviews
 Repeated reading of the data
 Noting down initial ideas
2. Generating initial codes  Coding ideas across the data set
3. Searching for themes  Sorting codes into potential
themes
 Gathering data relevant to each
potential theme
4. Reviewing themes  Check the themes against the
coded extracts
 Separating/ collapsing themes
 Checking that themes represent
the entire data set
 Development of thematic maps
5. Defining and naming themes  Refining the specifics of each
theme
 Generating clear definitions and
names for themes
6. Writing the report  Selection of extracts to reflect
themes
 Writing a narrative of the data

71
Appendix K: Researcher assumptions and reflections
It is important to acknowledge any assumptions and beliefs I held that may have
influenced my interpretation of the data as a way of minimising their impact on
analysis and interpretation of the interviews.
I was coming from the perspective of a white British female who had prior
experience of caring for a family member with a different cognitive disorder. I
therefore have experience of being the “family member carer” for a close relative and
this experience is part of the reason I chose to focus my research on cognitive
impairment. I feel a strong need to increase the research into these cognitive disorders
as a way of improving our understanding of the impact they have on the individuals
and families involved. Although I do not have a relative with MCI, my experience of
attending memory clinic assessments as a family member may have influenced how I
interpreted the information from participants. I need to be aware that my own
experiences and opinions of this process is likely to be very different from those of the
participants, and that different staff and memory clinics are likely to approach the
diagnostic process in slightly different ways.
Throughout the analysis, I maintained awareness that I might look for data
within the interviews that might fit with my perspective. Being upfront and open about
my experiences with my research supervisors helped me to stand back from my own
opinions and ensure that my interpretations were closely reflective of the data.
Reflecting on how I was interpreting the data at each stage of the process helped me
remain neutral and provide a balanced view of the data. Finally, peer-review and
regular meetings with research supervisors helped monitor the accuracy of the
interpretations and increase the rigour of the analysis.

72
I had not had previous experience of carrying out interviews with participants
for a research study prior to starting this project. This could have led me to be more
nervous in some of the initial interviews, impacting on how confident I felt in
following up topics and getting more detailed information from participants. I was able
to explore the areas set out in the interview schedule, but I may have explored topics in
more depth with later participants.

73
Appendix L: Extract of interview transcript with Grace
40 And what was the impact of that on you?

41
42 Kind of this all round kind of, anxiety I guess. Just going on in the back of my mind
43 all the time, about my mum and you know, what if it is dementia. Yeah. On going
44 worries. I suppose I was more, because of the work I do I work with people who
45 have dementia, so I guess I'm fairly clued in, and trained to observe and things and
46 maybe I was picking up on things that other people may think is normal. I think my
47 background definitely increased my worrying though! Because I thought if this is
48 dementia, um then, or not at that stage, but if it's leading towards something like
49 that, I used to think a lot even at that stage before she was diagnosed about the
50 impact on the future for my mum and obviously for me as well. Because I'm an
51 only child so I've always had this thing going on as well, which is kind of an "only
52 child" issue, which is about "what if my mum ever gets really ill and needs looking
53 after, how am I going to manage". I kind of felt a real burden about that, like the
54 burden would all be on me. So there was a lot of worry attached to the things I was
55 noticing in her.
56
57 And what was your experience of the clinic once the referral had been made?
58
59 I found it quite good really, yeah. Well um, I suppose there was, the hardest bit
60 again was, well not getting my mum there but…. The GP found it quite a job
61 persuading her that she needed to go, and then she said she would go to the
62 memory clinic, and then in the run up to that she wasn't keen to go. But once she
63 was there she really liked Dr S, so that made a real difference to her. I went along
64 with her to all of the appointments... I found the diagnosis quite helpful. It was
65 given the name "vascular cognitive impairment" with my mum but I understand
66 that they are the same things because I've done some research on it. So I realise
67 that the two terms are interchangeable I think. So in a way it was, I know it sounds
68 strange, but it was a relief. Because we could have been heading for a diagnosis of
69 Alzheimer's or vascular dementia. So the fact that it was actually just mild
70 cognitive impairment, was actually on the day of the diagnosis a huge relief. We
went out and had a special cream tea afterwards to celebrate you know! I had been
71 expecting something much worse. So that was good. And Dr S was very
72 supportive, very gentle, very tactful in the way she went through the process
73 of the diagnosis with my mum.
75
76 And did you personally feel like you were supported?
77
78 Um, yeah I think at that stage everything was said that could have been said. We
79 just need to wait and see how it develops. So as things develop, Dr S said I could
80 always phone up if I wanted to, if I had any further queries. They are very available.
81 We were there last week actually and I felt again, even more so this time, she said
82 you can always ring up if you do have queries. Which I didn't do, I haven't done up

74
83 till now, but you know, there might be times where I might want to, certain issues
84 where I might want to talk without my mum there, as often it's quite difficult when
85 you're in the room with my mum in raising issues because I realise they could be
86 quite sensitive. There were some things that I wanted to talk about but I can't think
87 of the example now. I had thought it would have been handy to have that
88 discussion without my mum there, but it might come back to me in a minute. But I
89 did sometimes feel restricted by both being in the appointment. In the very first
90 appointment Dr S said do you want to be seen separately or together. And because
91 it was the first appointment we both said together. I didn't see at that stage that
92 there could have been the situation… there wasn't anything at that stage that I
93 would have wanted to talk about on my own. But it is more as we progress, as
94 things come up, that that individual time could be really valuable.
95
96 And did you feel quite confident in understanding what mild cognitive
97 impairment is?
98
99 Yeah I did. Again because of my work but also reading about it on the internet.
100
101 Were you given information from the clinic?
102
103 Not really no we weren't given any… or were we? Yes I think we were given a
104 typed sheet. Yes that's it, we had it with us afterwards when we went for this cup
105 of tea and I got it out to quickly have a look at it. And my mum wasn't at all
106 interested in looking at it. Which is how she is really, I think it's her denial really.
107
108 Has the diagnosis changed her view at all?
109
110 Not really no. Which is really hard to manage. You know because I'm fully aware of
111 this diagnosis and potentially what it means for the future, that it does make my
112 mum in a high risk group for having… well Dr S said there's no evidence of
113 Alzheimer's, but vascular dementia. So I'm aware of that. But my mum again, she
114 doesn't talk about it at all. So in between appointments she doesn't talk about it,
115 the fact that she's under the memory clinic, or she doesn't mention the name of it.
116 A couple of weeks ago when I reminded her we had the memory clinic appointment
117 on Friday she said "oh yeah, that's because I had that fall isn't it? It really shook me
118 up that fall. Things like that have an effect on your memory". And I said "well they
119 do, but you know, if I remember I was worried about your memory for quite a
120 while before that". And she said "well everyone gets forgetful when they're old,
121 that's quite normal". So we go around in that circle all the time.
122
123 And how have things changed for you since she has been diagnosed?
124
125 I'm less… because we went last week which was 6 months after the diagnosis, and
126 things are pretty stable. My mum hasn't deteriorated in any way. I feel much more
127 positive now than I did this time last year. So I was worried before the diagnosis

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128 and then when it was diagnosed as mild cognitive impairment I was relieved
129 initially. And then when that did sink in, I obviously, I go through phases when I do
130 get quite upset about it and worry about it. Particularly if there's the odd thing
131 where mum says or does something a bit odd, I think "is it getting worse, is it
132 getting worse" you know. So more vigilant to what's going on. Oh and the other
133 thing it did was, we were advised to have lasting power of attorney set up, which
134 we did do. It's quite a mammoth task to work our way through those forms but we
135 got there in the end. So that did make us think about what could potentially lie
136 ahead. You know, having to fill out forms to do with somebody's health and care
137 decisions and their property and finance side of their lives. It's strange. In a way it
138 feels like I'm living in limbo a little bit. Just not knowing quite what the future holds
139 for my mum and the implications on my life and my husband and… the
140 uncertainty of it all. I'm not sure what to do about it. So I've just decided well, we
141 are in this situation, we just have to live with it and make the best of it that we can.
142 So I try to do nice things with my mum that she enjoys, that we enjoy, spend time
143 together, do nice stuff, go to nice places. You know.
144
That sounds really nice. At the clinic, were you yourself offered any kind of
145 support
146 about how to cope with the diagnosis?
147
148 No, no. That would have been really helpful. Even though you can go away and
149 read about it, sometimes with the feeling side of things, it would be nice to talk
150 that through with somebody. I can't think of a particular thing that I would have
151 wanted to discuss but I think it would have been useful. I got quite sad about the
152 diagnosis, as well as finding it a relief. In a way, it almost started a bit of a grief
153 process off, um, ok my mum is stable at the moment but we didn't know that at the
154 time and it was almost... Yeah I guess it was like the start of the bereavement
155 process. So just um, going through phases of feeling quite sad. Yeah I remember
156 crying a lot about it at one point. It's improved now a bit, generally. Yeah I still,
157 sometimes something might trigger it. It's quite up and down still. Say if I see a TV
158 programme about dementia, or I don't know I might come across something in the
159 course of my work. It's very hard to be working in that environment as I'm also
160 living it as well. Sometimes I have to go into care homes for people with dementia
161 and um, yeah that’s hard. I think "I hope this isn't my mum one day".
162
163 So what support do you have for yourself at the moment?
164
165 I talk to my son quite a bit. He's 24. Yeah, so we chat things over about mum. He's
166 the other attorney on the power of attorney, so I didn't have to do it all myself. And
167 I've got a couple of friends who I talk to about it which is helpful. And my mum's
168 sister in law, my mum's brother's wife. So they are quite good friends and go for
169 coffee together once a week. So I do talk to my auntie behind the scenes about my
170 mum. Mum, right from day one hasn't wanted anyone to know about this. Even at
171 first she didn't want my husband or son to know. Let alone anyone else. But she
172 agreed I could tell them & I also did tell my auntie, I trust her that she would never

76
173 let my mum know. But she had been having concerns about my mum for a while
174 as well from their discussions when they have coffee. She was on the brink of
175 mentioning something to me when I was also considering telling her. Somehow one
176 day we got talking about it and it all came out, so she's really good to talk to as well.
177 It's helpful sharing it with her but I did feel a bit deceitful talking to her behind my
178 mums back when I know mum wouldn't want that. But then I think overall,
179 probably in the long run it's beneficial to the whole situation because if I can talk
180 to somebody about it, then I'm happier in myself and then I have more in me to
181 support my mum with. Which is really good. And she can be another pair of
182 eyes to help out with things. If I had siblings there would be those other pairs of
183 eyes and ears, but I haven't so its really important to have that from other family
184 members. But I've decided that if things, if at some point things get worse, then I
185 would talk to mum again about being able to talk to other people as well about
186 what was happening. And just try to convey to her that I need that support, um, in
187 order to, because it's really hard for me I need that support in order to stay strong
188 so I can support her. And I guess that's the sort of thing that I'd find it helpful to
189 talk to Dr S about on my own. That was the example I was trying to think of. But
190 that was something where it would be nice to talk to Dr S about the best way to
191 approach that with my mum to get her to understand why it would be helpful
192 for us to be a bit more open about this situation. Because if I were to have that
193 conversation with Dr S with my mum there, she would go crazy at me for bringing
194 that up. It's a sensitive issue, because she's so sensitive about it, so it's really
195 difficult to talk to her sensibly without her getting really cross. I do think that for
196 her it's her worst possible nightmare coming true. So, that's really difficult for her
197 to face, so this huge defense mechanism is going on, that's how I see it, that's why
198 she is reacting like that. Which is a helpful way for me to think about her attitude,
199 when things are a bit fraught sometimes, I try to remember her side of things and
200 what she must be feeling.

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Appendix M: Extract of transcript for Colin, showing 1st and 2nd order coding
And how easy was the whole process for you?
Referral not requested by family/

GP did a screening test, easy process. Yeah, it was ok. I think it was a screening thing that they did at the GP's, I'm not too patient
Unsure what started the process of Dx. sure how it came about. But when the letters came through, the letters are very
Clinic letter & dementia concept very
complex. complex and the concept is very complex. Um…
The concept of?
Dementia is a complex concept to son. Dementia and so on. So also, I suppose the only thing is that the process assumes
Process assumes people at normal level to Process does not consider
start. that you have someone of normal ability, who is on a slow or rapid decline. But the individual abilities/ differences
Dad not academically smart. starting point with my dad is slightly different, because he's not um, academically
Dad illiterate. smart, as he's illiterate. And err, he has many skills but reading, understanding
Dad finds complex ideas difficult. abstract, complex ideas is not where his skills lie. So I kind of had to explain what
Son had to explain dementia before appt. it is before he came. So for him, I'm sure it's far less common, but I had to handle
Son gave explanation of memory problems. that side of it. He was pretty open to it, we didn't have to persuade him we just had
Son explained implications of an assessment. to tell him what it was. I also explained that it was something he could take or
Issues of consent if person unsure
of reasons & consequences of
Explained to dad appt not compulsory leave, he could do it if he chose, it wasn't a compulsory medical thing. But he was referral
Dad happy to attend clinic. quite happy to come.
And given that, how confident were you explaining MCI to him?
Son thinks dad is alright but hard to explain Dx more for family than patient as
MCI. Well I still don't think that he fully understands it. I just told him that he's alright he doesn't understand it
Dad doesn't fully understand. but I don't think he fully understands it. And err, in many ways some of the tests
Clinic tests like school tests. here are reminiscent of his school days, and so he's given a task, something he's
Dad keen to pass the tests. keen to pass, it's almost like he sees it as a test he wants to pass, and if he hits
Son thinks dad didn't understand reason for the right number he's pleased. But I think the reason of the test might have been

78
appt.
Information could be lost if people
Important to be accompanied to appt. lost on him. Which is why I think it's so important they're accompanied by attend clinic alone
Need someone who understands at appt. someone who can understand. I think it would have been a pointless exercise if
Would be pointless for dad to attend alone. he'd come on his own.
So is there a difference in how you both saw the changes?
Difference in how both see MCI. Absolutely. Um, yeah I… Um. He repeats himself quite a lot, and doesn't recognise
Dad is repetitive. that. But he's always sort of repeated himself a bit because he's a very lazy person.
Dad always has told repeated information. So rather than check if he's told you something he'll tell you again anyway. But
Son sees evident memory problems. there have been a few errors and bits and pieces. And I think that was evident, on
Dad not aware of memory changes "I'm
fine". our most recent visit, he's asked "any changes", "oh no I'm fine, all lovely, great".
Differing opinion of symptoms
Son notices changes & repetitions. And I say oh no I have noticed, he's been repeating things, made a couple of causing difficulty
Son notices name problems. errors in terms of names, and had to be reminded. And I think that's very useful
Dad thinks son telling tales on him. feedback but my dad thinks I'm telling tales on him, grassing him up. And that's not
Shouldn't feel he's telling tales on dad how it should work. But certainly a difference in how he perceives himself and the
Difference in perception of MCI. way that I do. Yeah.
Has that been difficult to manage?
Some changes are too hard to

Difficult to manage difference in opinion. Yes it has. And there are some more deeper, um changes in character with him that discuss
Son hasn't discussed some changes with dad. we haven't discussed here and I don't discuss with him. But it seems as the years go
Noticing more disappointing characteristics. past, that he's, some of the um, I don't know, more disappointing
Difficult characteristics coming out
Different characteristics manifesting. characteristics tend to err, are kind of manifest themselves more than they used to. more
Poor at buying things for others For example he's very very poor at buying rounds when you're in a group of people,
Dad always been tight/ cunning. paying his share, paying for a meal. But he's always been quite tight, quite cunning
in how he tries to get out of things. He's always been a little bit like that but then
Dad used to surprise you & be generous will correct himself, he'll go out and surprise you and do something generous.
Dad correcting character flaws less now. Whereas the corrections don't happen so much anymore. So you tend to get more Finds his dad less likeable
Less likeable qualities stronger now. of the, the less likeable bits of him are stronger now than they were. Just a little bit.
Son finds v difficult to disucss with dad. And that's a really difficult thing to discuss with someone, it's a really awful thing difficulty of telling someone about

79
their own character changes

Awful to tell dad about less likeable
qualities. to discuss with someone. He's 82, is that really the kind of thing you want to be
Son doesn't discuss that with dad/ clinic. bringing up? So yeah, that type of thing doesn't get discussed here. It's a really
Finds it v difficult to manage. difficult one. And there are other times that he can be quite lazy about his
Dad lazy about his appearance. appearance. He'll put on a pair of old trousers in the house and then wear them
Laziness happening more now. when he goes out, and that used to only rarely happen, and now that's happening
It's annoying that dad not bothered about Annoying traits are more
clothes more. It's annoying, not the end of the world but annoying. And these annoying exaggerated now
Annoying qualities more frequent. things tend to be more frequent than they were so.
And how are you finding managing that?
Feels stuck, no good way to

Personality changes difficult to manage. It is quite difficult. You're caught between two places; you either tackle it or you manage dad's personality
Tackle it/ explain to others- caught between. make excuses on his behalf, to the outside world. You sometimes can be stuck in
Stuck between 2 unappealing options. between these two places and neither are particularly appetising, either to try to
Be a barrier/ deal with it. be a barrier for him or to deal with the thing. But there are many of these things
Qualities more exaggerated now. that have always been there but it's more heavily concentrated now I suppose.
So it sounds like you're still trying to work out the best way to manage this?
Feels he is more serious person

Still trying to work out how to manage these. Yeah, yes. And whatever way you do it inevitably means you become a more with dad now
Son become more serious with dad. serious person. So you know, you're not quite as much fun with him, you don't have
Don't have as much fun as used to with dad. quite as much fun when you go out you know. It's like having another kid you just Relates MCI to looking after a child
Keep an eye on dad, be more direct with
him. need to keep a slight eye on. And err, sometimes I have to be more direct. In the
Treats dad same way you would a child. same way you would with a child. And I think that that, certainly I am probably less,
Not as kind as he should be in dealing with Expectation of himself that he
dad. probably not as kind as I should be, in dealing with those things, or if I would be if should be kinder to dad
If occasional, it would be easier to deal with. I was dealing with him occasionally. I'd normally deal with it in a way that wasn't
Sometimes upset dad as frequent Being harsh as a result of frequent
annoyances. going to upset him. But when there are things that happen regularly, you don't annoyances
No time for diplomacy. really have time for diplomacy, you need to crack on. So yeah, I'd probably be

80
Less frequent= would be more diplomatic. more diplomatic about it, were it less frequent I suppose.
And how do you find these types of things impact on you?
Responsibility prevents him being

Responsibility for dad= less jolly person. It means that I'm not such a jolly person myself because I'm taking all this his usual self
Son not as pleasant anymore. responsibility for someone else. And um, yeah I'm not as, just not as pleasant a
Hard to switch off from stress with others. person as you ordinarily would have been. And you can't always switch off from
Struggle to transition from one role
Admin jobs stressful for son. that either. Particularly if you've done half day of um general admin, on his behalf, to another when home
Can be a shit when he gets home. and other bits and pieces, and then you get home, you know I can be a bit of a shit
Hard to transition from one thing to another. at home for the first half hour or something, as I transition from one job into
Should be doing a better job. another. Um, yeah, it's something I should be doing a better job of I'm sure. But it's
Quite difficult to get right. quite difficult, um.
Contact becomes based around a need. And increasingly your contact with that person becomes um, based around a need. R'ship now much more needs based
Phone calls are different. So you know, most phone calls I have now with him, although they start "oh hi how
More need-based than chats. are you, what you been up to", it'll be "I need this, the electricity bills come in and
Struggle to talk to dad about what
Hard to have normal conversations with dad. needs to be paid". So it's very difficult to just have a conversation about what he's he'd like to
Can't talk about what he's been doing. been up to or what someone else has been up to. And um, I think that it makes,
Thinks dad has become more selfish. from my experience, it's made him appear to be more of a selfish character. So you
World revolves more around dad. know, the world increasingly does revolve around him, and the issues that are
Doesn't share same view as dad. affecting his life, which are clearly big deals to him. But for someone with kids,
Hard to juggle different life jobs
Son has to juggle lots of life jobs. paying a mortgage, a job and all the other things that you're juggling (laughs), you plus pressures from dad
Small things are big deal to dad. know a fence panel or whatever isn't a big thing. And it's a big deal to him.
Dad losing his sense of proportion. And also I feel he's losing his sense of proportion gradually. You could have a death
Annoyed by dad's perceived
Deaths of extended family don't impact dad. in the extended family, and you'll explain, and very quickly the conversation will selfishness
More noticable that dad interested in himself turn back to him and what's going on in his life. It's much more noticeable now, yeah
Dad less interested in other people he's less interested in other people. And also less able to see you know, the
Lost his sense of proportion proportion of time spent on um.. And it's odd, particularly with death, which is a
Death common subject in your 80's big deal for anyone in their 80's, a subject that comes up all the time, everyone
Dad lost proportion of events around him. they know is dying. But he's lost the proportion between a person he's just met, or

81
No diff between family/ vague friends someone he's known for a couple of years at the dinner club, to someone who is
Wants dad to understand his own
Death of family more important to others. maybe a member of his extended family. For everyone else, the impact of that, so perspective on things
Father in law had big impact on Craig but
not dad for example my father in law dying, is bigger on the world that we know, than
Dad lost proportion of events around him. somebody he met in the shop. But he's kind of lost that sense of proportion.
Small problems are not a big deal to Craig And also that, or a driving license that expires in two months time, isn't a big deal,
Bigger acheivements are not acknowledged
now compared to one of his grandkids achieving something really quite amazing at
Dad's personality change impacting
Dad losing his sense of proportion. school, that deserves more time, but he's less able to be proportionate. his extended family
And does that come onto you and impact the relationship you have with him?
Responsible for dad due to his

Changes impact Craig most as mum died. Yeah it does yeah. Mainly because I'm err, my mum's dead and has been for some place in the family (oldest son)
Sister lives far away whereas Craig is near time and I only have one sister, and she lives in Cardiff. Whereas I live 5/6 miles
Craig first port of call for dad away from my dad. So Um, and I'm the oldest. So I tend to be first port of call for
Dad has lots of friends & family who visit these things. He's not lonely, he's got lots of friends, family come to visit him, he
Craig helps with the admin. gets out and about a lot, he knows lots of people. But for this kind of thing, admin,
Craig helps with running dad's house running a house, it will be me.
Is that new things you've picked up having to do?
Already had a level of

Craig doing new things for dad now. Yeah some new things. However, I'm, he's, I've always had to do more for him than responsibility for dad
Craig does more than for other parents. most elderly parents. Because when he gets a letter through it's very difficult for
Admin has always needed a visit to read
verbal him to um, everything has to be verbal. It's always required a visit, but there's
More admin for Craig now certainly more of it now and perhaps more things that perhaps he probably would
Dad distressed by things he used to do
himself have tackled or waited, now cause him more distress than they used to. He's got
Dad feels an urgency for minor jobs more urgency for more minor things, which he always used to, but it's more
Dad always been "mad" noticeable now so. The difficult thing about my dad is that he's mad anyway, he's a
Dad is a character, nutter nutter, and he's, if you asked anyone about him he's quite a character, he's quite
Dad eccentric & used to do odd things eccentric, he's very likeable. But there are many things he would have done 30

82
anyway
Dad could be on a spectrum. years ago, that you'd think whatever spectrum you're looking at he's on it (laughs).
Dementia hard to Dx in someone who is
"mad" That's always him, so diagnosing dementia is a really tough thing in someone who's
Characteristics were already there quite a nutter anyway. So lots of these things were already there, but seem to be
More pronounced characteristics now taking a stronger foothold in his character.
Doesn't trust his own judgment of

Other people notice changes in dad I don't think it's just me noticing them, or just focusing on them. I try to check with his dad all the time
Checks changes with wife and sister other people, my sister, my wife, just "is this weird to you, do you think this is off".
Some things are his personality And sometimes it's just the way he is, you're not going to change him, but other
Some things are "weird" or "off" things, "yes he is"
And how has your relationship with him changed?
Does less with dad now. There are less things I can do with him now, less places I'd be comfortable taking
Restricting time & places can go
Spend less time with dad, avoid some places him to. Um, and possibly spend slightly less time with him now than I used to with dad
Limited places he can take dad to because there's a limit to the amount of places I can take him to. And also it's
Not as enjoyable to spend time with dad now probably not as um, fulfilling or enjoyable to spend time with him as it used to be.
hard to accept not enjoying his time
Not quite as fun as it used to be to see dad It's still great but it's just not quite there. Um so, I'd say it's taken me a little while with his dad
Taken a while for Craig to come round to it
all to come round to it all. I didn't really notice there was anything wrong with him but
Hard to accept the changes seen in
Wife first noticed changes in dad, not Craig my wife said "no he is forgetting stuff, you can't see it but he is". And it took me a his dad
Took Craig a while to come round to
changes while to come round to that. Um, we tend to do things now, my son is 2 and half,
Does things son likes, as dad likes them too so we tend to do things that he likes because I know my dad will like them. So I
Likening his dad to his small child-
No longer go to pub with dad for few pints wouldn't take him down the pub and have a couple of pints with him, I'd take him enjoy the same things
Go to garden centre instead to a garden centre to eat a cake and look at the fishes. So really all of the things my
Do a lot of the things that son enjoys now son enjoys my dad enjoys as well. So we tend to do those things. But I can't um,
Can't do the things Craig wants to with dad yeah do things that I'd want to be doing. For example, take my son round there and
Can't leave son with dad to look after him say I'm going to get my hair cut and you can look after him for half an hour. Mainly
Major concerns about dad's ability to watch because my wife would kill me, she has major concerns about his ability to look

83
son
Thins Craig wants are no longer possible for Different r'ship with dad to what he
them after him. But yeah things I'd like to do, now that isn't really going to happen for us. would like to have
Dad couldn't be babysitter for son now So he's not going to be a babysitter or anything.
Leaves son with dad more than he should My son is now the age where it would work but um, but no I leave him with dad,
If in museum dad watches son briefly in my dads care probably more than I should but it's if we might be in a museum,
Dad could watch son for 10 minutes I will go to the loo and he can look after him for 10 minutes, or at his house if I'm
Concerns about his dad's safety at
Plays with son if Craig doing admin at dad's doing admin work for him they can play. But you can't, you still need to be very looking after others
Needs to be careful with dad & son together careful with it. But yeah…
Things he should be doing if he was
Would like to take dad on holiday more I think I would also probably take him away more, take him on holiday that kind of a better person
Would be very hard to take dad on holiday
now thing. But it's hard, it would be very difficult, and it's the safe route, it's not a
If better person, Craig would take him away holiday for yourself. So there are opportunities there, if I was a better person I
Craig wants holidays for himself as few
weeks off probably would take him away for a week. But I get very few weeks off and I'm, my
Focuses on children having good holiday focus now is on the new generation and the fact that it's the children who need
Dad has had his life, kids need theirs now their week and enjoyment. I've had my life and he's definitely had his. So I'd love to
Unlikely he would take dad on holiday with
them be taking him away with us, but um, that's unlikely now. If I take him away it's an
Would just take him overnight somewhere
now overnight thing, visit a relative, stay in a hotel so it's a nice break for him and that.
Week long holidays with dad are done now But I think the days of week long holidays abroad with him are done now. And that's
Sadness at the loss of family time
Shame he can't go away with dad anymore a shame. It really is. I'd try to take him once a year somewhere after mum died, but with his dad
Wouldn't be fun on holiday. now it wouldn't be so much fun. And it's a shame the grandchildren will miss out
Kids miss out on experience of granddad with the experience of going away with granddad, or staying with him because he's
Sad dad will miss out on holidays. fun, for him it's not going to happen, which makes me really sad.
So how do you view yourself in relation to your dad now, in terms of being a
carer
or not?
Not a carer yet, but in carer position for Not identifying as a carer for his
admin No I don't think I am a carer yet. I'm definitely in a carer position in terms of his um, dad

84
Tax, MOT's etc, absolutely a carer for dad. on the admin side. So in terms of taxing anything, doing MOT's, paying all of that
Not a carer for other side of care yet
(personal) side of things, yeah absolutely. But on the other side no, he's still getting himself
Craig not there every morning & evening yet out all over the place. So um, I'm not having to spend every morning and evening
Not looking after him like that at the Caring means having to spend a lot
moment. around there looking after him or caring for him in that way. But I think, you can of your time with that person
Can see that he might become carer one day see that that may well happen one day but err. But at the moment, no. He would
Imagines he may become a carer in
Dad would struggle without Craig currently. struggle, be unable to operate month to month without me doing things, but week future
Looks after himself mostly ok at the
moment. to week he can look after himself quite comfortably. He's not at the carer level yet.
You said that you do feel like you have a slightly different role now with him?
Craig does have a different role with dad Yeah, and also I think they're, well I've only had one experience with Alzheimer's
Dad seems willing to hand over
responsibility and that was completely different. But he seems more willing to hand over that
Glad his dad is happy for him to
Dad not protective of independence responsibility as well, less protective of his independence. It might just be him, but take over responsibilities
Might be lazy, but seems ok for Craig to do
things you say to him "I'll do that" and he says "oh ok". That might be laziness but he also
relinquish responsibility more than expected might be more willing to relinquish responsibility, more than I expected.
How do you find that?
Thankful he doesn't have to fight

Easier that Craig doesn't have to fight to do his dad to give up some of his
things Much easier if I don't have to fight him. It would be much more difficult if I not only independence
Difficult if he had to fight to do things for
dad had to do the task but had to fight really hard to be allowed to do that task. My
Experience is opposite of fighting with dad experience of that is quite the opposite.

Appendix N: Extract of transcript with Emma showing 2nd order codes
Ok, well that could be good and bad I suppose! So now, let's think about
since
you noticed the changes, has it impacted on your wider life at all?
MCI dx improved
life as not
No, I think it, if anything has improved. I know that sounds funny. I think because dementia
I am reassured that it is only mild cognitive impairment, and he's not got a raging
dementia or something that will happen quickly, I think that he's, his mood is
Dx has reduced
better, he's calmer, and that is better for us all round really. And the memory both their worry
changes, I mean I'm not so worried, and he isn't so frantically worried. I found it..
Actually, well, we have been together for 25 years, and since that time he used to
relate stories of his youth. It was all sort of, drink drugs, rock and roll. So I know
he did quite a lot of drugs, not when I knew him, well in the past by that point,
but he always maintained that he had suffered some sort of brain damage or
something as a result of drugs. He had an inpatient episode, he did have a history
of mental illness which he attributed to drugs, psychoactive drugs. Acid maybe.
Anyway, as a result, he felt sure they had some sort of effect on him. So err,
Uncertain cause to
the memory
having got this diagnosis, I'm not sure whether or not it's related to whether he changes
did actually suffer some sort of brain damage at that time, which impacted on
him throughout, or whether it's something that's started over the last few years
and is progressive. Or whether drugs can cause progressive change like that. It's
all very mysterious to me if I'm honest. But sorry, not much impact on our life at
all actually.
How do you both see the memory difficulties now?
Dx helped give
shared
understanding of
Well now we don't have any differences really in how we see it, the MCI. Well I difficulties
think there will always be a difference because of our natures, but you know,
much less marked differences than there was. We've come together more. At
Dx helped her
recognise his
least I'm not thinking "oh he's imagining it" or he's making it up, all that. Yeah. I difficulties as real
know it's not another incidence of hypochondria. You know. He does worry more
about it being a bad thing than I do. At the moment, I don't really see it as a bad
thing at all. But he, well he worries less so than he did, but is still worried about
the future. He worries where it's all going to go. And I try to say that the same
might apply to me, the same thing could be happening, especially as I'm ten
years older. So I, there is a concern, I can't say that I'm totally unconcerned, I am
a
Hb much more
concerned about
bit concerned, I'll just see how things go. He is, much more convinced that it's all getting dementia
going to end badly, go down this route, become dementia.
And how does that impact on you?
Well, day to day, you just carry on, it's only very seldom that we sit down and Carry on as
have normal
86
a heart to heart about it, because we just don't live our life like that. So day to day
it doesn't really impact, it's at the back of my mind all the time, but I'm good at
putting things to the back of my mind. I manage like that. We both seem to
Able to manage
emotions better
manage our responses and our emotions a bit better since the diagnosis. Err since Dx
because, he was getting quite irascible, quite difficult, so being snippy but he'd
think I was being snippy and maybe I was a bit. But then we'd possibly end up
having a full scale row or something. It would escalate anyway. And this is less
so
these days, much less so, it's much more of an even keel, and I think we both
recognise that A- that he does have a problem, and I think he recognises that he
has a problem so by extension I have a problem. So you know, to that extent it's
"oh sorry, I didn't mean it", quite readily, I can say "oops", or I can see him
sometimes just get up, take a deep breath, walk around the kitchen and come
More shared
awareness
back you know. So things are, I think we are both aware of each others emotions, between them
a bit more aware than we were previously.
And leading from that, has there been any role changes for you as his
partner?
No role change as
No, don't think so. Well there has been a change in that Eric is a bit more, well a result
that's to do with two other things, A- retirement and having more time, but also
I was ill in October and was in hospital, and had quite a long recovery time. And
he stepped up to the plate in a way that I did not expect of him. Taking over
everything, looking after me, cooking, cleaning, house keeping, just about
anything along those lines. Whereas before with his memory I'd sort of thought
Hb actually doing
he was absolutely hopeless. But now he's doing more since then, despite these more since Dx
other difficulties. He is doing more yes, it hasn't gone the other way yet. I don't
have to do any of the admin or anything, we both just do that, or whoever
happens
to be there at a particular time. Actually he probably does more if it's anything
online because he wants to do that. But I' conscious I might be falling behind. All
these things that he still does for us.
Do you envisage having to take over any of these things in future?
Does not forsee

Not from where we are at the moment, it just depends on how it goes but if it future role change
stays like this then no I wouldn't envisage that. If it develops and the mild
becomes
more severe then we'll cross that when we come to it. So there hasn't really been
MCI only caused
very discreet
any huge impact. I think that might be due to the degree of mildness. We have no problems
extra help or anything like that so..
Well that's good. And what has the impact been on you personally of the
MCI
diagnosis?
Dx helped her
recognise his
Well yes, I've become more anxious. Before, having pushed everything to the difficulties as real
back of mind, I now recognise that there actually is a problem. Which does
concern me about the future. I don't like awake thinking about it, at least not
87
Deal with issues

when they arise in
often it does occasionally. But um, I just think I'll deal with that when it comes to future
it but I do recognise that there might well be some problems up ahead. Well, if
he does develop either more severely or, I mean at what point do you cease to be
MCI and move into dementia? At what point would it be that it gets that worse. If
it is dementia, if it does go down that road, well gosh I don't know how I'd deal
with it, I don't know, I'd have to see at the time. I can't say I lie awake thinking
about it, I don't, but there's a niggle at the back of my mind, an awareness I think
Trying to
normalise his
really you know. And err I think that I have once or twice I have caught myself, difficulties
when he has been tired, or he's got muddled or something, you know I start
thinking "oh no, is this really dementia" but then I scold myself and say no, I
mean
I get tired and muddled and stressed same as everyone else, so I try not to think
too much into it. Yes so, I am more vigilant and alert and aware of these sorts of
symptoms now definitely.
What do you imagine happening with the MCI in future?
Very unsure how

I really don't know, I mean if it's going to be dementia or not. I don't know how it MCI will progress
is going to go. No one does. Not at this stage, if it gets markedly worse over a
period of time then you know, that's a fairly clear indicator of how things will be
going. But not at this moment in time, I would say at the moment if anything he's
Trying to
normalise his
stable, he doesn't appear to be getting worse, and if he does get muddled it's difficulties
usually because he hasn’t slept well or he's tired. There's usually a reason for it.
Life is uncertain
There's no other areas I worry about really. The uncertainty I find difficult, but so can't dwell on it
life is uncertain. I try not to dwell on these things. Thoughts flit through my mind
inevitably but that's it really.
88
Appendix O: Initial thematic map
Added
complications to
Changes are family life
coming
I am not a
carer yet
Anticipating Uncomfortable
change to our Valuing social experiences
relationship relationships more
Minor role
changes are
manageable The ups and
MCI is a relief downs of
when you are
getting a
expecting worse
diagnosis
Will MCI
progress to Positive,
dementia reassuring
diagnostic process
Uncertainty
makes life Life is uncertain
anyway
more
difficult
Uncertainty is difficult
to live with
MCI causes
Anticipation of
guilt &
future support
frustration
& care
MCI is hard to
Appendix P: adjust to Table
of themes and definitions
Moral concerns of MCI is hard

Real or
diagnosing an to cope with
imagined loss
uncertain problem
A lack of
understanding and
knowledge Try to stay
positive
MCI is not
a clear
concept We understand
MCI in different
ways
Theme name Definition
The ups and downs of This captures people’s overall experience of going
the diagnostic process through the diagnostic process with the PwMCI. The 89
1 theme includes feelings about the clinicians, initial
responses to the diagnosis and more negative
experiences within the process.
Empathy from clinical The clinicians within the memory clinic were all
staff spoken about in positive ways, and the empathy that
1.1 was shown to the PwMCI was a large factor in this.
Participants felt included in sessions and that their
concerns were listened to.
Positive effects of There was a sense of relief to the MCI diagnosis
diagnostic labeling initially, as people had feared that the symptoms they
were noticing were indicative of dementia. Those
1.2
who had been offered regular follow-up appointments
found these helpful. The diagnosis brought people’s
opinions about what was happening together more.
Needing appropriate There were noted downsides to the process. Some felt
preparation for that they should have been told what the
1.3 assessments appointments would entail beforehand. People felt
prevented from having private conversations with the
doctors.
MCI is not a clear This theme represents arguments about the
concept ambiguous nature of MCI as a diagnostic entity.
People felt there was a lack of information for them
2 to help explain what MCI is, and this led people to
coming up with their own explanations. There were
arguments about the value of receiving the diagnosis
when it left people managing so much uncertainty.
There is a lack of This highlights that limited information available to
information about MCI participants once their relative had received an MCI
2.1 diagnosis. This meant there were different
interpretations of MCI from the beginning.
Issues of informed Participants mentioned being uncertain how and why

consent and an ambiguous the referral for a memory assessment was started.
2.2 diagnosis There were concerns about the purpose of the
diagnosis and the diagnostic process when it raised as
many questions as it answered.
MCI has made the People were left managing large amount of
future uncertain uncertainty following the MCI diagnosis. This was
3 causing different reactions in different participants.
People felt very unsure of what the future now held
for their relative.
The difficulty of coping This demonstrated how hard some participants were
with uncertainty finding the uncertainty that MCI had caused. People
felt less able to use their normal coping strategies,
especially if this would involve the PwMCI. The
3.1 offer of emotional support for families would have
been beneficial but was not available to participants
at the time of diagnosis. Overall, people were finding
more stress and anxiety due to the uncertain future
and progression.
Resilience in the face of Some participants were coping with the uncertainty
uncertainty by not worrying about it, as they felt this would not
3.2 change things. Some were maintaining their usual
coping methods, which were helping them manage
their own feelings.
Anticipation of future People were imagining having to rely on formal

support and care support services in the future if the MCI progressed.
3.3 People expressed different attitudes in terms of
making future plans; some had started to make plans
90
Appendix Q: Guidelines for authors for International Psychogeriatrics

International Psychogeriatrics
Please read these instructions carefully before submitting articles. Articles which are not prepared in
accordance with these guidelines will be returned to authors unreviewed.
Scope and contributions

International Psychogeriatrics is written by and for those doing clinical, teaching, and research work
with elderly people. It is the official journal of the International Psychogeriatric Association (IPA) and
is published by Cambridge University Press, Cambridge, UK. Although it is concerned primarily with
psychogeriatrics, the journal welcomes contributions from all concerned with the field of mental health
and aging. Original research papers are particularly sought.
Contributions include original research articles, reviews of the literature, brief reports, “for debate”
articles, case reports, letters to the editor, book reviews and guest editorials. Apart from editorials, “for
debate” articles and book reviews, which are commissioned, contributions to International
Psychogeriatrics are spontaneously written and submitted by authors. Papers are reviewed by at least
two expert reviewers selected by the Editor-in Chief. At present about half of the papers submitted are
accepted for publication in this journal which is published twelve times per annum. The journal’s
Science Citation Index Impact Factor (2014) is 1.934. Submission of a paper implies that it is neither
under consideration for publication elsewhere, nor previously published in English. Manuscripts must
be formatted double-spaced with ample margins on all sides and the pages should be numbered. Please
leave a spare line between paragraphs to enable typesetters to identify paragraph breaks without
ambiguity. International Psychogeriatrics uses the spelling of American English. Manuscripts written
by those whose primary language is not English should be edited carefully for language prior to
submission. International Psychogeriatrics has a Language Advisory Panel of English speakers willing
to check manuscripts for style prior to submission. Details can be found at both the journal website
(http://journals.cambridge.org/ipg) under the related links icon and the IPA website (http://www.ipa-
online.org/).
Submission of manuscripts
Note: It is not acceptable to submit to the journal an article that has previously been published or
submitted elsewhere. Authors are required to assert that they have not submitted their article
elsewhere upon submission to International Psychogeriatrics.
Manuscripts should be submitted online via our manuscript submission and tracking site,
http://mc.manuscriptcentral.com/ipg. Full instructions for electronic submission are available directly
from this site. If you are unsure of the suitability of your manuscript, please e-mail the abstract to the
Journal Office before submitting online: ipaj-ed@unimelb.edu.au
To facilitate rapid reviewing, communications for peer review will be electronic and authors will need
to supply a current e-mail address when registering to use the system.
When submitting your manuscript you will need to supply:
A cover letter, the manuscript with the text file in MS Word format, and all figures in TIFF or JPEG
format. If the paper reports the results of a randomized controlled trial please ensure that it conforms to
our requirements listed below under the heading ‘Submission of randomized clinical trials’ on page 2.
If the research was paid for by a funding organization, the cover letter must contain the following three
statements (this information does not have to be included in the manuscript itself but only in the cover
letter). If the research was not paid for by a funding organization only the third statement is required:
1. That the authors have not entered into an agreement with the funding organization that has limited
their ability to complete the research as planned and publish the results.
2. That the authors have had full control of all the primary data.
3. That the authors are willing to allow the journal to review their data if requested.
Submission of a manuscript will be taken to imply that all listed authors have seen the final
version and approved it.
All papers will be assessed by two reviewers. If their opinions are too disparate to permit the Editor-in-
Chief to make a decision on publication or the reviewers are unable to make clear recommendations,
the paper will be assessed by a third reviewer. The Editor-in-Chief’s decision to accept, reject or
request revision of the paper for publication will be final. The abstract and author details will be
seen by prospective reviewers of the manuscript. Authors can suggest the names and contact
information of experts qualified to review the work, but the Editor-in-Chief is not obliged to follow
these suggestions. Papers must bear the authors’ names, titles (e.g., Dr, Professor, etc.), affiliation(s),
91
and address(es). This information will be seen by reviewers. Reviewers’ names will not be supplied to
authors unless a reviewer asks to be so identified. Authors will be provided with a copyright transfer
form to sign after acceptance of the manuscript, consenting to publication of the paper in International
Psychogeriatrics.
The receipt of all submitted papers will be acknowledged. Authors who do not receive an
acknowledgement of receipt of their paper within three weeks of submission should assume that their
paper has not been received and should contact ipaj-ed@unimelb.edu.au, Professor Nicola
Lautenschlager. Academic Unit for Psychiatry of Old Age, Department of Psychiatry, The University
of Melbourne, RMH Royal Park Campus, 34-54 Poplar Road, Parkville, Victoria 3052, Australia, Tel:
+61 3 8387 2326, Fax: +61 3 8387 2667. Most authors can expect to receive an initial decision on the
fate of their paper together with referees’ reports within no more than 100 days of submission. Authors
who have received no further communication 120 days after acknowledgment of receipt of their article
should contact ipaj-ed@unimelb.edu.au.
Submission of papers reporting randomized controlled trials
In order to ensure the public availability of the results of randomized controlled trials, the International
Committee of Medical Journal Editors has suggested that all such trials should be registered. In
common with many leading medical journals International Psychogeriatrics has decided to follow this
policy. Since 31 December 2006 we will not review any paper submitted to us reporting a randomized
clinical trial unless the trial was registered in a public trial registry from the date it commenced
recruitment or, if recruitment started before 30 November 2006, we require that the trial was registered
no later than 30 November 2006. For further details on the reasons for this policy see the June 2006
editorial, Ames, D. (2006). Registration of Clinical Trials submitted for publication in International
Psychogeriatrics. International Psychogeriatrics, 18, 191-193.
All manuscripts reporting randomized controlled trials should have the following sent with them
or they will be returned to the authors.
a. A check list and flow chart in accordance with the CONSORT guidelines which can be
found at http://www.consort-statement.org. Please send in the checklist as a
supplementary file and include the flow chart as Figure 1 in the manuscript.
b. The trial protocol is to be submitted as a supplementary file. This will not be published
but it is needed to appraise and peer review the paper.
c. The registration number of the trial and the name of the trial registry in which it was
registered. Please add these to the last line of the paper’s structured abstract. Trials
that began enrolment of patients after 31 December 2006 must have been registered
in a public trials registry at or before the onset of enrolment to be considered for
publication in International Psychogeriatrics. Trials that began enrolment prior to 30
November 2006 must have been registered no later than that date. Our criteria for a
suitable public trial registry are: free to access; searchable; identification of trials by
unique number; free or minimal cost for registration; validation of registered
information; inclusion of details to identify the trial and the investigator within the
registered entry (including the status of the trial); research question; methodology;
intervention; and funding and sponsorship disclosed.
Organization and style of research articles

Title page and corresponding author: Each article must have a title page with the title of the article, a
list of all authors and their titles, affiliations and addresses. Each author must select only ONE country
as their location. Author qualifications should not be listed as these are not published in the journal.
The title page should explicitly identify the author to whom correspondence about the study should be
addressed and that author’s email address, telephone number, fax number and postal address must be
clearly stated.
Abstract: Abstracts for original research and reviews should be structured and incorporate 4 sub-
headings: background, method(s), results, conclusion(s). Abstracts for protocol only papers should omit
the third sub-heading (Results). Abstracts for brief reports and case reports should have no sub-
headings. Abstracts should communicate the primary findings and significance of the research. They
should not exceed 250 words in length. Abstracts for brief reports should not exceed 200 words.
Key words: Under this heading and beneath the abstract, please list up to 8 words for the purpose of
indexing.
Running title: This should contain no more than 50 characters including spaces.
92
Introduction: Briefly state the relevant background to the study to provide the necessary information
and context to enable non-specialists to appreciate the objectives and significance of the paper. Most
introductions to articles received for review are too long.
Methods: Materials and procedures should be described in sufficient detail to enable replication. Any
statistical procedures used should be outlined and their use should be justified here. Results should not
be included in the Method(s) section. If statistical procedures are used, they should be described here in
adequate detail. Choice of statistical technique should be justified including some indication of the
appropriateness of the data for the technique chosen. Adequacy of the sample size for the statistical
technique(s) used must be addressed. If appropriate, a description of the statistical power of the study
should be provided. If multiple univariate significant tests are used, probability values (p-values)
should be adjusted for multiple comparisons, or alternatively a multivariate test should be considered.
Further advice about statistics and International Psychogeriatrics can be found in the following article:
Chibnall, J. (2000) Some basic issues for clinicians concerning things statistical. International
Psychogeriatrics, 12, 3-7.
The following article may also be of assistance to intending contributors: Chibnall J.T. (2004).
Statistical audit of original research articles in International Psychogeriatrics for the year 2003.
International Psychogeriatrics 16, 389-396.
Both of these are available at the International Psychogeriatrics website by following the link to
Statistical Advice for intending contributors. This is also located under the related links icon at the
journal homepage (http://journals.cambridge.org/ipg).
Results: This section may contain subheadings. Authors should avoid mixing discussion with the
results. Sample sizes should be delineated clearly for all analyses. Some indicator of variability or
sampling error should be incorporated into the reporting of statistical results (e.g. standard deviation,
standard error of the mean). Wherever possible an indicator of effect size (e.g. Cohens d, η², Cramers
V, 95% confidence interval) should be reported in addition to p values. If multiple univariate statistical
tests are used p values should be adjusted for multiple comparisons or alternatively a multivariate test
should be used. Obtained statistical values for tests should be reported with degrees of freedom (e.g. t,
F, χ²).
Discussion: Interpretation of the results with respect to the hypothesis(es) and their significance to the
field should be discussed here. Results should be interpreted in the light of the size of the effect found
and the power of the study to detect differences. Any methodological weaknesses of the study should
be outlined, including limitations imposed by sample size. Careful consideration of the conclusion(s)
for accuracy and alternative interpretation, and possible conflicts or resolution of conflicts in the field
is encouraged. Limited speculation and directions for future research can be included.
Conflict of interest declaration: This section must be completed. This should follow the discussion
and precede the references. Where there is no conflict of interest perceived to be present the heading
Conflict of Interest should be included with the single word “none” underneath it. For full details see
below.
Description of authors’ roles: This section must be completed if the paper has 2 or more authors. It
should contain a very brief description of the contribution of each author to the research. Their roles in
formulating the research question(s), designing the study, carrying it out, analysing the data and writing
the article should be made plain. For example: H. Crun designed the study, supervised the data
collection and wrote the paper. M. Bannister collected the data and assisted with writing the article. N.
Seagoon was responsible for the statistical design of the study and for carrying out the statistical
analysis.
Acknowledgements: Any acknowledgements other than conflict of interest declarations in regard to
sponsorship should be listed briefly here.
References: For original research no more than 30 articles that have been published or are in press
should be cited, and for brief reports no more than 15 references. If authors believe that more than 30
references are essential to an original research article this must be justified in the cover letter.
Unpublished data, personal communications, and manuscripts submitted for publication should be cited
in the text and the supporting material submitted with the manuscript. International Psychogeriatrics
uses the Harvard referencing system. Within the text of each paper journal articles should be cited in
the style (Smith and Jones, 1999). Where an article quoted in the body of the text has more than two
authors the term “et al.” should be employed, i.e., (Smith et al., 1999). Text citations of multiple
articles should be separated by semicolons, i.e., (Smith and Jones, 1999; Smith et al., 1999).
At the end of each paper, all cited references should be listed alphabetically in the style indicated
below. If the Digital Object Identifier (doi) is known, it should be added to the reference.
93
For a journal article: Smith, J., Jones, W. I. and Doe, J. T. (1996). Psychogeriatrics for pleasure and
profit: an expanding field. International Journal of Unreproducible Results, 3, 240–242.
doi:12.3456/S123456789.
For a book: Smith, J.A., Brown, P.Q., Jones, H.A. and Robinson, D.V. (2001). Acute Confusional
States. New York: Cambridge University Press.
For a book chapter. Park, K., Tiger, B. and Runn, F. (1999). Psychogeriatrics in context. In G.Verdi
and A. Boito, (Eds.) New Medical Specialties (pp. 240–260). Cambridge: Cambridge University Press.
Where an article or book chapter has more than six authors only the first author’s name should be given
followed by the words “et al.”.
For further examples of reference style see papers in recent issues of International Psychogeriatrics.
Figures/Tables: The manuscript should contain no more than five figures or tables (no more than three
figures or tables for brief reports). The copies submitted with the manuscript must be of sufficient
quality to enable reviewers to evaluate the data. The journal has a small budget to permit some colour
to be printed in come issues but authors wishing to publish figures requiring colour to communicate the
data may be required to pay some or all the additional cost.
Figure/Table legends: Each caption should begin with a brief description of the conclusion or
observation provided in the figure. These should be submitted as a separate section after the
References.
Supplementary material: More detail about the submission of supplementary material is available
below – see “Supplementary Material for online only publication” and “Instructions for contributors –
Supplementary Material” in subsequent pages of this document.
Word limits: At present International Psychogeriatrics does not have a fixed word limit for articles,
other than for brief reports for which the word limit is 1500. Because of limited space, short articles
have a higher chance of acceptance than longer ones of an equivalent standard.
Brief Reports
This category allows for articles that are shorter than original research but have the same style and may
be used to report new and innovative research and/or significant (hot topics). Unlike letters to the
editor, brief reports are peer reviewed. They should be of 1500 words or less and include no more than
three figures or tables, no more than 15 references, and have an unstructured abstract of no more than
200 words. They may contain supplementary material which is published online only.
Reviews of the Literature
International Psychogeriatrics will publish at least 1 literature review in each issue. Authors intending
to submit a literature review should check recent issues of International Psychogeriatrics to ensure that
no review of the topic they propose to discuss has been published in the journal in recent times. Review
articles may have up to 50 relevant references. Authors contemplating the submission of a literature
review article are welcome to contact the editor to discuss the appropriateness of the topic prior to
submission (ipaj-ed@unimelb.edu ). Literature reviews should have an abstract.
“For Debate” Articles
From time to time International Psychogeriatrics will publish “For debate” articles on topics of a
controversial nature. “For debate” articles will be commissioned by the editor, but readers are welcome
to suggest possible topics for debate by contacting the editor at ipaj-ed@unimelb.edu.au. To view
recently published debates see journal issues 19(6), 20(2), and 21(2).
Case Reports
Case reports will be accepted for review and considered for publication. They should be of 1200 words
or less and should have no more than 10 references. An unstructured abstract of 100 words or less is
required. When submitting case reports authors must enclose a letter of consent to publication from
each of the patient(s) described or, if the patient(s) is/are deceased or not competent to consent the
authors must indicate that they have obtained such consent from the patient's legal guardian(s). These
letters will be kept confidential.
Study protocol articles
Any author contemplating submission of a protocol only paper is advised to contact the editor of IPG
via ipaj-ed@unimelb.edu.au to discuss the paper’s suitability for submission prior to submitting it.
Qualitative research articles
Authors of qualitative research articles are advised to contact the editor of IPG via ipaj-
ed@unimelb.edu.au to discuss the paper’s suitability for the journal before submitting online.
Letters to the Editor
Reader's letters will be considered for publication. Letters should be no longer than 1,000 words and
should have no more than 5 references. No abstract is required. Usually tables will not be published in
94
the Letters section of the journal, but may be accepted for online publication as supplementary material
at the journal website.
Supplementary Material for online only publication
International Psychogeriatrics has the facility to publish unedited figures, tables, appendices, any non-
English sections, and other material which is not suitable for inclusion in papers published in the paper
copy of the journal as supplementary online material attached to the electronic version of individual
papers at http://journals.cambridge.org/ipg. This renders such supplementary material accessible
without clogging the journal with materials that will be of interest to only a small minority of readers.
If submitting such supplementary material please follow the instructions below. If referring to
supplementary material in a paper the following form of words should be used “see table S1/figure
S1/appendix A1 published as supplementary material online attached to the electronic version of this
paper at http://journals.cambridge.org/ipg”.
Conflict of Interest
Conflict of interest occurs when authors have interests that might influence their judgement
inappropriately, regardless of whether that judgement is influenced inappropriately or not. International
Psychogeriatrics aims to conform to the policies of the World Association of Medical Editors in regard
to conflict of interest. For full details please see the website
http://www.wame.org/wamestmt.htm#fundres . To this end all authors must disclose potential conflicts
of interest so that others may be aware of their possible effects. Specifically, under the heading conflict
of interest, all articles must detail:
The source(s) of financial support for the research (if none, write “none”).
A description of any sponsor’s role(s) in the research (e.g., formulation of research question(s), choice
of study design, data collection, data analysis and decision to publish).
Information about any financial relationship between any author and any organization with a vested
interest in the conduct and reporting of the study. For example, in a study on the effects of a drug made
by Bigpharma which directly competes with another drug made by Megadrug a declaration might say
“Jane Smith has received research support and speaker’s honoraria from Bigpharma and has received
financial assistance from Megadrug to enable her attend conferences.”
Instructions for contributors – Supplementary Material

There will normally be one of the following reasons for you to be supplying supplementary material to
accompany the online version of your article:
1. You wish to link to additional information which due to its nature does not lend itself to print media
(examples- full data sets, movie or sounds files etc…)
2. The Editor of the Journal has requested that you extract certain information from the original article
in order to allow for space constraints of the print version.
3. You have requested additional material to be available to accompany an article that does not
normally allow such material to be included (examples – sections not written in the English
language, tables to accompany a correspondence article).
N.B. Please note that no copyediting or quality assurance measures will be undertaken on
supplementary material (other than to ensure that the file is intact). The authors therefore
warrant that the supplementary material that they submit is in a suitable format for publication in
this manner. The material shall be published online in exactly the form that it is supplied.
Submission
Please follow the following instructions to supply supplementary material to accompany the online
version of your article:
1. Each supplementary file must be supplied as a separate file. Do not supply this material as part of the
file destined for publication in the print journal.
2. Each supplementary file must have a clear title (for example, Supplementary Figure 1).
3. Provide a text summary for each file of no more than 50 words. The summary should describe the
contents of the file. Descriptions of individual figures or tables should be provided if these items
are submitted as separate files. If a group of figures is submitted together in one file, the
description should indicate how many figures are contained within the file and provide a general
description of what the figures collectively show.
4. The file type and file size in parentheses.
5. Ensure that each piece of supplementary material is clearly referred to at least once in the print
version of the paper at an appropriate point in the text, and is also listed at the end of the paper
before the reference section.
Format and file size
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• File sizes should be as small as possible in order to ensure that users can download them quickly.
• Images should be a maximum size of 640 x 480 pixels at a resolution of 72 pixels per inch.
• Authors should limit the number of files to under ten, with a total size not normally exceeding 3 MB.
Sound/movie files may be up to 10 MB per file; colour PDFs/PowerPoint may be up to 5 MB per
file; all other general file types may be up to 2 MB per file but most files should be much smaller.
• We accept files in any of the following formats (if in doubt please enquire first):
MS Word document (.doc) , Adobe Acrobat (.pdf), Plain ASCII text (.txt), Rich Text Format (.rtf),
WordPerfect document (.wpd), HTML document (.htm), MS Excel spreadsheet (.xls), GIF image (.gif),
JPEG image (.jpg), TIFF image (.tif), MS PowerPoint slide (.ppt), QuickTime movie (.mov), Audio file
(.wav), Audio file (.mp3), MPEG/MPG animation (.mpg)
If your file sizes exceed these limits or if you cannot submit in these formats, please seek advice from
the editor handling your manuscript.
Supply of author-generated artwork
Monochrome line subject illustrations supplied as hard copy only
These should have the author’s name and figure number clearly marked on the back of each piece of
artwork. The figures will be scanned at 1200 dpi and compressed using LZW. The scanning process
can result in problems with some fine ornaments and with any grey tints used (e.g. tints can fill in; a
Moiré interference pattern can be produced; or poor quality, patchy tints result). Illustrations of this
kind may be acceptable in a desktop publishing format, but they do not proceed satisfactorily through
the several stages before printing. Plain black/white is acceptable, but all other shades/tints should be
replaced with distinct PostScript fills or custom fills.
Monochrome line subject illustrations supplied in digital form
Macromedia Freehand, Adobe Illustrator and Adobe Photoshop are the preferred graphics packages.
Before submitting your artwork, please do the following:
• Where possible, please supply illustrations as TIFF or EPS files (300 dpi). When submitting EPS
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operating system used (e.g. Mac OS 8.6, Windows NT).
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names and libraries of fonts used in the artwork or EPS files.
Pattern fills and tints

Artwork packages do not always generate pattern fills for output on image/platesetters. Imagesetters
will interpret them differently from your Mac or PC and the result often looks pixellated or blocked.
Where possible, use PostScript fills, custom fills and conventional tints.
PostScript fills frequently do not display well on screen but they do print out correctly. It is best to
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output on low-quality CUP artwork instructions.doc 2 laser printers. Supplying as TIFF or EPS files
(see above) alleviates this problem.
Please therefore:
• Use only the tints, patterns and symbols shown here.
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not output adequately to plate/image setters.
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black/white/greyscale.
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• Do not use .hairline. line widths in graphics packages.
Monochrome halftone subjects

Figures composed of (hard copy) photographs should be unscreened glossy prints presented at
publication scale; each component part should be named with a lower-case letter. Photographic artwork
is numbered as part of the sequence of figures, not as separate plates.
If supplying these in digital form, your repro house should follow these instructions:
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300 dpi for 133 or 150 screen.
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shadow/black areas within a printed image. To prevent the heavy or dark areas of your
halftones from filling in or the light areas being washed out we specify a dot range that allows
for gains or losses during the process to lithographic printing. Pre-set the dot range at 1%
highlight to 96% shadow where possible, we will check your files before outputting as a
safeguard.
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software such as the LZW compression package.
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unable to use your electronic file, we can scan in the laser proof as an alternative until a
revised file can be supplied.
• Line & tone combination: Files scanned as line & tone combination should be scanned at a
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• Do not submit line subject drawings with coloured tints unless the figure is required as a colour
plate; use only black/white/greyscale.
• If supplying colour subjects in digital form, submit as TIFF or EPS files and choose CMYK
colour mode when saving your scans. If you supply files as RGB we need to convert them to
the CMYK printing process before we can print, this usually results in a slight change of the
colour values; therefore all colour correction must be carried out in CMYK mode on your
machine.
Checklists
• Always supply a printed directory of file names, laser proofs of all the figures, and a list of
fonts/typefaces used in labelling artwork.
• Transfer media
• You can supply artwork files in any of the following media:
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Before dispatching your disks please run them through a virus checker program. If possible, also check
Word and Excel files for viruses.
General notes
Following acceptance of a manuscript the contact author should receive proofs within 1-12 weeks.
They also will be required to complete and forward a copyright form and authors’ checklist both of
which will be forwarded to the corresponding author by email when the article is accepted.
The average time from an article being accepted to being e-published ahead of print as a First View
article is 35 days, provided authors return proofs promptly. E-publication generates a doi number and
counts as full publication for citation purposes.
Editorials, “For Debate” articles and book reviews are commissioned by the editor.
Reviewers who reviewed papers in the previous calendar year will be acknowledged in the journal each
year. International Psychogeriatrics no longer publishes an annual index as modern computerised
search techniques have rendered annual hard copy indices obsolete.
Contributors should refer to recent issues of the journal for examples of formatting (abstracts, headings,
references, tables, etc.).
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Author Language Services

Cambridge recommends that authors have their manuscripts checked by an English language native
speaker before submission; this will ensure that submissions are judged at peer review exclusively on
academic merit. We list a number of third-party services specialising in language editing and / or
translation, and suggest that authors contact as appropriate. Use of any of these services is voluntary,
and at the author's own expense.
For book review submissions:
Office of the Editor-in-Chief Professor David Ames
Professor Nicola Lautenschlager Normanby House
Professor of Psychiatry of Old Age St George’s Hospital
Editor-in-Chief, International Psychogeriatrics, 283 Cotham Road
RMH Royal Park Campus Kew, Victoria 3101
34-54 Poplar Road, Australia
Parkville, Victoria 3052 Email: dames@unimelb.edu.au
Australia Tel: +61 419378455
Email: ipaj-ed@unimelb.edu.au Fax: +61 3 9816 0477
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MRP Proposal
1. Introduction
1.1 Background and theoretical rationale
A growing body of literature in dementia research is moving towards the
consideration of how dementia may impact on emotion processing systems within the
brain, and subsequently on our abilities to recognise emotions in others. The emerging
research indicates that people with dementia have difficulty recognizing facial
expressions of emotions in others (Henry, Ruffman, McDonald, Peek O’Leary,
Phillips, Brodaty, et al., 2008), and that this may be linked to neural deficits in
recognition and comprehension of emotions (Henry et al., 2008).
Emotion recognition is a vital part of human social functioning, allowing us to
relate to others around us in appropriate and informed ways. The ability to detect
emotions in other people’s faces is thought to be integral to successful social
functioning, formation of relationships and survival through detection of threat, for
example (Brune & Brune-Cohrs, 2006). Impairment in emotion recognition, as seen in
those with dementia, is therefore likely to have a vast impact on someone’s social
functioning and quality of life.
In order to understand how neurodegeneration may affect emotion processing
at the earliest stages of dementia, focus has moved to those with mild cognitive
impairment (MCI). These individuals show neural changes intermediate to those of
dementia and healthy adults (Albert & Blacker, 2006) and are at a higher risk of
developing dementia relative to the normal population. Research in the area of
emotion recognition in this group is still in its infancy, meaning the impact of these
deficits for those with MCI remain relatively unknown.

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The emerging literature in emotion recognition and MCI suggests that this
group do have a deficit in the ability to accurately read other people’s emotions.
Henry, Thompson, Rendell, Phillips, Carbert, Sachdev, et al., (2012) found that
individuals with MCI were significantly more impaired at recognising emotions
relative to controls, as did Teng, Lu & Cummings (2007). Other research has
indicated that those with MCI are impaired in recognising specific emotions such as
anger, sadness and fear (McCade, Savage, Guastella, Lewis & Naismith, 2013; Fujie,
Namiki, Nishi, Yamada, Miyata, Sakata, et al., 2008).
As well as cognitive changes, psychological difficulties are common in those
with MCI, with depression among the most common psychological difficulties found
(see Apostolova & Cummings, 2008, for a review of the literature). Considering
existing research into how depression impacts on someone’s’ ability to recognise
facial expressions of emotion, there is evidence that it directly affects this ability in
those without cognitive impairment (Bourke, Douglas & Porter, 2010). Depressed
individuals tend to rate neutral faces as sad more often than those without depression
(Bourke et al., 2010), demonstrate difficulty in recognising particular emotions such
as disgust (Bediou, Brunelin, d'Amato, Fecteau, Saoud, Hénaff, et al., 2012), and have
an inability to discriminate between emotional versus neutral faces (Anderson,
Shippen, Juhasz, Chase, Thomas, Downey et al., 2011).
Currently there is very little research into the relationship between MCI,
emotion recognition and psychological functioning, and whether depression may be
having an impact on the emotion recognition deficits that have been seen. It is vital to
understand what may be influencing emotion recognition at the earliest stages of
dementia, as it is at this stage that interventions are likely to have the most impact.
They would also have the potential to avoid or reduce the likely negative
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consequences of emotion recognition deficits, such as behavioural changes and
increased carer burden (McCade, Savage, Guastella, Hickie, Lewis & Naismith,
2013). This has been frequently suggested as an area for future research (e.g.
McCade, Savage & Naismith, 2012; Henry, Thompson, Ruffman, Leslie, Withall,
Sachdev, et al., 2009), demonstrating the need for the present investigation. Thus far,
research in MCI has focused on either emotion recognition deficits or psychosocial
functioning (e.g. Henry, von Hippel, Thompson, Pulford, Sachdev & Brodaty, 2012),
while the interaction between emotion processing deficits and psychological
difficulties has gone relatively under-investigated. If the mechanisms behind emotion
recognition deficits are more clearly understood, it will allow professionals and family
members to implement more effective care for people with MCI as early as possible.
1.2 Research question and main hypotheses
The proposed research will focus on emotion recognition deficits in MCI, with the
aim of adding to research demonstrating the existence of emotion recognition deficits
in this group. It will aim to investigate what may be underlying the deficits seen in
emotion recognition in terms of mood. Specifically, does depression in those with
MCI act as a mediator and lead to increased difficulty with emotion recognition?
Hypothesis one: People with MCI will demonstrate significant deficits in
facial emotion recognition compared to age-related norms.
Hypothesis two: People with MCI will demonstrate levels of depression that
are higher than the ‘minimal depression’ cut off scores.

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Hypothesis three: There will be a positive correlation between level of
cognitive impairment1 and depression levels, and a negative correlation
between depression levels and emotion recognition ability.
Hypothesis four: The relationship between MCI and emotion recognition will
be mediated by depression.
2. Method
2.1 Design
The study is cross-sectional and correlational in design. The independent variable will
be having a diagnosis of MCI, diagnosed by a memory clinic. The dependent variable
will be the scores on emotion recognition measures, while the scores on mood
measures will be the mediating variable.
2.2 Participants
Participants recruited for the study will be both male and female adults diagnosed
with MCI. There will be no age restriction, as although more common among older
adults, MCI may also present in younger adults. The diagnosis of MCI will have been
previously given by a professional within the memory clinics from which participants
will be recruited.
Inclusion criteria include a current diagnosis of MCI, given by a referral to and
diagnosis from a memory clinic. Participants must be able to speak English and have
adequate eyesight and hearing to complete the tests (completion of an MCI diagnostic
assessment will be taken as evidence of this). A current diagnosis of depression is
acceptable, as is taking anti-depressant medication. Exclusion criteria include current
or previous substance misuse, a neurological disorder (e.g. head injury or stroke), a

1
Cognitive impairment here refers to that measured in the current research, not to test scores
carried out in a memory clinic as part of diagnosis.
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learning disability or impaired facial processing (as measured by Benton Facial
Recognition Test, described later). This is due to the fact that an impairment in the
ability to process faces would also impair emotion recognition, but this would not be
attributable to depression or MCI, as is being investigated in this study.
Participants will be recruited through memory services within Surrey &
Borders Partnership NHS Trust (SABP). Staffs within the neuropsychology service in
SABP have agreed to assist with recruitment (Dr. Damian Dewhurst,
Neuropsychologist) through their clinics, and a further contact within the memory
services in SABP will be contacted to assist in identifying suitable participants.
From the existing literature, the effect sizes produced from this form of
investigation are within the ‘medium’ range (Henry et l., 2009; McCade, Savage,
Guastella, Hickie et al., 2013; McCade, Savage, Guastella, Lewis et al., 2013). This is
therefore the estimated effect that will be used for the following power calculation.
Assuming a power of 0.8, to detect an effect size of 0.5 using a matched-pairs
t-test analysis, an a priori calculation with G*Power (3.1.7; Faul, Erdfelder Lang &
Buchner, 2007) suggested a total sample of 27. Based on literature, in order for a
Sobel mediation analysis to have adequate power, a sample size of 42 is needed (Fritz
& McKinnon, 2007). Therefore, the total estimated sample size recruited would be 42.
2.3 Measures
Emotion recognition: The Ekman 60 Faces is a computerised test showing 60 black
and white photographs of faces depicting different emotions (Ekman & Friesen, 1976.
Taken from the Facial Expressions of Emotion: Stimuli and Tests (FEEST), Young,
Perrett, Calder, Sprengelmeyer & Ekman, 2002). Participants have to pick which
emotion they think best describes that shown, out of six options. This test has been the
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most widely used in this area of research, and has been shown to have a high level of
reliability and validity in the detection of facial emotion recognition abilities across
various cultures and ages (Young et al., 2002). The Short Form Benton Facial
Recognition Test (Benton, Sivan, Hamsher, Varney & Spreen, 1994) will be used to
measure participants’ ability to perceive faces, to rule out facial perception difficulties
impacting the results. This test involves participants matching a face shown from
different angles to a target face, measuring their ability to perceive faces in general. It
is widely used in this form of research, and as such has been validated for use with
older adults (e.g. McCade, Savage, Guastella, Lewis et al., 2013).
Mood: The Beck Depression Inventory-II (BDI-II; Beck, Steer & Brown,
1996) is a self-report measure that will be used to measure levels of depression. There
are 21 questions measured using a 3-point Likert scale, with higher scores indicating
higher levels of depression. This measure has been shown to be reliable and valid for
use with an older adult population (e.g. Segal, Coolidge, Cahill & O’Riley, 2008).
The measure has internal consistency and correlates strongly with other measures of
depression, and has been suggested as an effective screening measure among older
adults (Jefferson, Powers & Pope, 2001; Segal et al., 2008). It has severity cut-off
scores, ranging from ‘minimal’ to ‘severe’ depression.
Cognition: The Addenbrooke’s Cognitive Examination Third version (ACE-
III; Neuroscience Research Australia [Neura], 2012) will be used as a cognitive
screening measure. There are three versions available (A, B, C), which reduces the
chance of people learning the information from previous rounds of testing. It is
scored out of 100 and can be broken down into measures of memory, language,
visuospatial, attention and fluency, allowing for a more thorough understanding
of someone’s range of cognitive abilities. The ACE-III has been shown to be valid
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in the detection of memory difficulties in older adults and in measuring ability in the
aforementioned cognitive domains (Hsieh, Schubert, Hoon, Mioshi & Hodges,
2013).
2.4 Procedure
The research will be carried out in the following steps:
1. Suitable participants with MCI will be identified by staff at the recruitment
sites based on their diagnosis. They can be newly diagnosed or existing
patients. Staff will explain the research project to patients when they are seen
(for newly diagnosed patients, and in follow-up sessions for existing patients).
On top of this, advertisement leaflets will be placed in the waiting rooms of
the memory services involved and the researcher will make frequent visits to
the clinics to help remind staff of the need for recruiting participants.
2. If interested in taking part in the study, an information letter will be provided
to the participants. This will inform them of what to expect from taking part,
where it will take place and the purpose of the research.
3. All participants will be provided with a consent form, explaining the details of
the study. They will have to sign this prior to taking part and will be provided
with a copy for their personal records. Confidentiality and their right to
withdraw from the research at any time will be clearly explained, and there
will a gap of at least one day to allow time for participants to reconsider before
testing.
4. An appointment time will be arranged between the participant and researcher.
This will most likely take place at the site from which they were recruited. It
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could also take place at the participant’s own home, if for example they have
limited mobility.
5. All testing materials will be used for all participants, and will be completed in
one session of roughly one hour. The order of the tests will be systematically
altered each time, in order to reduce researcher fatigue during testing.
Participants will complete the following tests:
 Ekman faces (on a computer)
 The BDI-II
 The Benton Facial Recognition Test
 The ACE-III
6. To save on time, multiple patients will ideally be seen in one day.
7. Data will be stored in a confidential manner, with participant numbers given to
each person so they cannot be identified. The manner in which ID numbers are
assigned to participants will be known only to the researcher, to improve
confidentiality of data.
2.5 Ethical considerations
There is an ethical consideration with this research concerning the time taken to
complete the testing procedure. Given the procedure described above, it is likely to
take up to one hour to complete, which could be difficult for older adults with
cognitive impairment, due to attention difficulties for example. However, given that
the participants are likely to be relatively highly functioning, as they are within the
MCI diagnostic criteria, this is unlikely.
Another point to consider is the identification of possible psychological
difficulties that have not previously been diagnosed, through the use of the BDI-II. In
106
this case, if participants were scoring within the range suggesting the presence of a
mental health difficulty, the researcher would discuss this with their supervisor about
the best course of action, for example advising the participant to contact their GP for
advice and support.
Ethical approval will be sought from University of Surrey Faculty of Arts and
Human Sciences ethics committee and Surrey and Borders Partnership Trust NHS
ethics committee, using the Integrated Research Application System (IRAS).
2.6 R&D considerations
The study will involve recruiting from NHS sites, and therefore ethical approval will
be requested from Surrey & Borders Partnership NHS Trust R&D department. SABP
have a current research focus on improving knowledge on dementia, and this research
will therefore fit into their research interests.
3. Project costing
 Estimated printing costs (for consent forms, materials, information letters etc):
£11.00 (based on 4p per sheet of black and white printing).
 Purchase of the BDI-II record forms and interpretation report from Pearson:
£109.00
 FEEST: free use of a copy via Dr. Damian Dewhurst
 ACE-III: free to download from
http://www.neura.edu.au/frontier/research/test-downloads/
 Total costs estimate: £120.00
4. Proposed data analysis

107
In order to investigate hypothesis one, a one-way analysis of variance (ANOVA) will
be performed. This will highlight any group differences between the MCI participants
and the expected level of performance, based on existing norms for the test. If an
ANOVA is not suitable, given the comparison of participant data to normative data, a
t-test will be performed in order to identify whether the MCI group perform
significantly worse than aged-matched data. Further post-hoc tests could be carried
out using several t-tests to see whether specific emotions are causing the overall
deficit, for example a difficulty with recognising anger or sadness. In this case, a
correction will be needed to reduce the chance of reporting a false positive, and
therefore a Bonferroni correction will be performed.
Hypothesis two will also be analysed using a t-test, comparing performance on
depression scores to the norms for the BDI-II. This will show whether the MCI group
demonstrate levels of depression that are significantly higher than baseline, minimal
levels.
Hypothesis three will be investigated using Pearson’s correlations, to
investigate the relationship between the variables. The above analyses all rely on the
data being normally distributed; therefore normality will be tested in SPSS via a
Shapiro-Wilk test. The equivalent non-parametric tests will be performed if the data is
not normally distributed.
For hypothesis four, a mediation analysis will be undertaken to identify if
depression mediates the deficits seen in emotion recognition for those with MCI. The
proposed method for this is the Sobel test (Sobel, 1982).
5. Involving interested parties

108
As part of the proposed research, it will be beneficial to get an idea from individuals
with cognitive impairment and their carers as to whether they feel it is a useful area to
study. Similarly, staff at the recruitment sites could offer ideas about how best to
recruit participants and where best to carry out the research. This consultation could
occur in several ways: by attending a service user and carer group linked to a memory
service in SABP; attending staff meetings to discuss the research project and ideas, or
setting up a carer group with assistance of memory service staff to ask for feedback
on the project.
6. Contingency plan
If recruitment proves difficult then fewer participants could be recruited. Some of the
existing research has used sample sizes of as few as 9 participants (e.g. Teng et al.,
2007) while still finding significant deficits in emotion recognition ability. If there
were insufficient participants to complete a mediation analysis, the correlational
analysis between emotion recognition, cognition and depression scores would still go
ahead. Although this will eliminate the investigation into the influence of depression
specifically, it will increase current psychological understanding of how these
variables relate to one another. Alternatively, the fairly stringent exclusion criteria
could be relaxed without impacting the results. For example, allowing non-English
speakers to participate with the assistance of an interpreter and adapted measures.
An additional contingency for the correlations and mediation analysis could be
to include all patients assessed at the memory clinics, to include those who did not
receive a diagnosis of MCI. This would increase the spread of scores as well as
increasing the number of participants, allowing for a wider understanding of whether
depression mediates emotion recognition difficulties, or whether this is exclusive to

109
those with MCI. Similarly, participants could be extended to include people with
other neurological disorders that are known to impact on emotion recognition, such as
stroke. This could allow for a wider understanding of if and how depression mediates
this ability in different groups, while also making recruitment easier.
7. Dissemination strategy
In order to disseminate the results of the project, I would aim to attend the recruitment
sites and deliver an oral presentation of the results. This would allow further
understanding of the mechanisms influencing emotion recognition deficits in MCI and
assist staff with development of appropriate interventions for individuals and their
families. Another aim would be to submit the research for publication in a peer-
reviewed journal, such as the British Journal of Neuropsychology, to add to the
current scientific knowledge on MCI.
8. Required appendices
8.1 References
Anderson, I. M., Shippen, C., Juhasz, G., Chase, D., Thomas, E., Downey, D., et al.
(2011). State-dependent alteration in face emotion recognition in depression.
The British Journal of Psychiatry: The Journal of Mental Science, 198(4),
302-308. doi:10.1192/bjp.bp.110.078139
Apostolova, L. G., & Cummings, J. L. (2008). Neuropsychiatric manifestations in

mild cognitive impairment: A systematic review of the literature. Dementia
and Geriatric Cognitive Disorders, 25(2), 115-126. doi:10.1159/000112509
Beck, A. T., Steer, R. A., & Brown, G. K. (1996). Manual for the Beck Depression
Inventory–II. San Antonio, TX: Psychological Corporation.
Bediou, B., Brunelin, J., d'Amato, T., Fecteau, S., Saoud, M., Hénaff, M. A., et al.
(2012). A comparison of facial emotion processing in neurological and
psychiatric conditions. Frontiers in Psychology, 3, 98-108. doi:
10.3389/fpsyg.2012.00098
110
Benton, A. L., Sivan, A. B., Hamsher, K. S., Varney, N. R., & Spreen, O. (Eds.).
(1994). Contributions to Neuropsychological Assessment. New York, NY:
Oxford University Press.
Bourke, C., Douglas, K., & Porter, R. (2010). Processing of facial emotion expression
in major depression: A review. Australian and New Zealand Journal of
Psychiatry, 44(8), 681-696. doi:10.3109/00048674.2010.496359
Brune, M., & Brune-Cohrs, U. (2006). Theory of mind- evolution, ontogeny, brain
mechanisms and psychopathology. Neuroscience and Biobehavioural
Reviews, 30(4), 437-455.
Ekman, P., & Friesen, W. V. (1976). Pictures of facial affect. Palo Alto, CA:
Consulting Psychologists Press.
Faul, F., Erdfelder, E., Lang, A-G., & Buchner, A. (2007). G*Power 3: a flexible
statistical power analysis for the social, behavioral and biomedical sciences.
Behavior Research Methods, 39, 175-191.
Fritz, M. S., & McKinnon, D. P. (2007). Required sample size to detect the mediated
effect. Psychological Science, 18(3), 233-239. doi: 10.1111/j.1467-
9280.2007.01882.x
Fujie, S., Namiki, C., Nishi, H., Yamada, M., Miyata, J., Sakata, D., et al. (2008). The
role of the uncinate fasciculus in memory and emotional recognition in
amnestic mild cognitive impairment. Dementia and Geriatric Cognitive
Disorders, 26(5), 432-439. doi:10.1159/000165381
Henry, J. D., Ruffman, T., McDonald, S., Peek O’Leary, M., Phillips, L. H., Brodaty,
H., et al. (2008). Recognition of disgust is selectively preserved in
Alzheimer’s disease. Neuropsychologia, 46(5), 1363–1370.
Henry, J. D., Thompson, C., Rendell, P. G., Phillips, L. H., Carbert, J., Sachdev, P., et
al. (2012). Perception of biological motion and emotion in mild cognitive
impairment and dementia. Journal of the International Neuropsychological
Society, 18(5), 866-873. doi:10.1017/S1355617712000665
Henry, J. D., Thompson, C., Ruffman, T., Leslie, F., Withall, A., Sachdev, P., et al.
(2009). Threat perception in mild cognitive impairment and early dementia.
The Journals of Gerontology: Series B: Psychological Sciences and Social
Sciences, 64B(5), 603-607. doi:10.1093/geronb/gbp064
Henry, J. D., von Hippel, W., Thompson, C., Pulford, P., Sachdev, P., & Brodaty, H.
(2012). Social behavior in mild cognitive impairment and early dementia.
Journal of Clinical and Experimental Neuropsychology, 34(8), 806-813.
Hsieh, S., Schubert, S., Hoon, C., Mioshi, E., & Hodges, J. R. (2013). Validation
of the Addenbrooke's Cognitive Examination III in Frontotemporal Dementia
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and Alzheimer's Disease. Dementia and Geriatric Cognitive Disorders, 36(3-

4), 242-250.
Jefferson, A. L., Powers, D. V., & Pope, M. (2001). Beck Depression Inventory-II
(BDI-II) and the Geriatric Depression Scale (GDS) in Older Women. Clinical
Gerontologist, 22(3-4), 3-12. DOI: 10.1300/J018v22n03_02
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MRP Literature Review
Abstract
Background: Emotion recognition in Mild Cognitive Impairment (MCI) is an
emerging area of research interest, following developments in dementia research that
suggests this is an area of difficulty for those with cognitive impairment. However, it
is unclear how emotion recognition is affected in the earliest stages of the
neurodegenerative process, and how this relates to psychosocial functioning in this
group.
Aims: The aim of the review was to summarise the existing research into facial
emotion recognition in those with MCI and depression, in order to identify areas for
further research. Specifically, do deficits in facial emotion recognition abilities impact
on psychosocial functioning in those with MCI.
Method: 18 studies were reviewed, including meta-analyses and previous literature
reviews in the area. Eleven of these were related to emotion recognition in MCI, and
seven were focused on emotion recognition in depression.
Results: The results are mixed regarding emotion recognition in MCI and depression,
however there is evidence that this ability is compromised in both these disorders.
Discussion: There is still a need for future research in this area, as the impact that
emotion recognition deficits have on the psychosocial functioning of those with MCI
remains unclear.
Conclusion: Future research should focus on whether emotion recognition deficits
lead to higher levels of depression in this group, as the impact of emotion recognition
deficits on psychosocial functioning is greatly under-researched.

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Introduction
Traditionally, research in dementia has focused on how neurodegeneration impacts on
memory and cognition; however, a growing body of literature is now considering how
dementia may impact on emotion processing systems within the brain, and
subsequently on our abilities to appropriately recognise emotions in others. The
emerging research in dementia indicates that deficits in recognition and
comprehension of emotions can lead to problems processing emotional expressions in
others (Henry, Ruffman, McDonald, Peek O’Leary, Phillips, Brodaty, et al., 2008;
McCade, Savage & Naismith, 2012). The ability to recognise and respond to emotions
in others is vital to social and interpersonal functioning, and governs how we act in
social situations and form relationships with others (Brune & Brune-Cohrs, 2006).
Therefore, the dysfunction of this ability in those with dementia is likely to have
highly negative consequences for these individuals.
In order to understand how neurodegeneration may affect emotion processing
at the earliest stages of dementia, focus has moved to those with Mild Cognitive
Impairment (MCI). These individuals are at an elevated risk of developing dementia
relative to the normal population, and show neural changes intermediate to those of
dementia and healthy adults (Albert & Blacker, 2006). Research in this area is still in
its’ infancy, meaning the impact of these deficits for those with MCI remain relatively
unknown. Among the psychological difficulties found in MCI, depression is noted as
one of the most common (see Apostolova & Cummings, 2008, for a review of the
literature). Literature also suggests that major depression is related to emotion
recognition difficulties in those who do not have any form of additional cognitive
impairment (Bourke, Douglas & Porter, 2010). However, currently there is very little
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research into the relationship between MCI, emotion recognition and depression, and
whether emotion recognition difficulties may be associated with higher levels of
depression in this group.
Mild cognitive impairment
Mild cognitive impairment (MCI) is becoming an area of increasing research interest.
Initially, diagnosis of MCI was based on criteria devised by Petersen, Smith, Waring,
Ivnik, Tangalos & Kokmen (1999), who stipulated that it applied to individuals with a
subjective memory complaint beyond normal ageing, without dementia, but who had
an intact ability to perform activities of daily living (ADL’s) and intact intellectual
functioning. This was revised to include “amnestic” and “non-amnestic” subtypes
within the diagnosis (Artero, Petersen, Touchon & Ritchie, 2006). If there is reported
memory impairment, this signifies a diagnosis of amnestic MCI (aMCI). If there is
cognitive impairment that is not memory-related, such as impairment to language, this
suggests non-amnestic MCI (naMCI). Both subtypes can affect single or multiple
cognitive domains, representing discreet areas of impairment or more varied
difficulties.
The reported conversion rates to dementia for these subtypes vary according to
different sources. However, for aMCI, conversion is most likely to be to Alzheimer’s
disease (AD), at a rate of 10-15% per year (Petersen et al., 1999; Rountree, Waring,
Chan, Lupo, Darby & Doody, 2007). For naMCI, there is a broader range of cognitive
deficits, which can occur across all cognitive domains, such as language, executive
functioning or visuospatial abilities. Non-amnestic MCI is therefore more likely to
lead to different forms of dementia, such as dementia with Lewy bodies, rather than
AD (Petersen & Morris, 2005). Although these groups are at an elevated risk of
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developing dementia in comparison to the general population (Petersen et al., 1999),
not everyone will progress to dementia. Some of those with the MCI diagnosis remain
stable without evidence of further cognitive decline (Gauthier, Reisberg, Zaudig,
Petersen, Ritchie, Broich et al., 2006), while some return to a normal level of
cognition for their age group (Ganguli, Dodge, Shen & DeKosy, 2004).
Emotion recognition and healthy ageing
To understand more about emotion recognition in MCI, it is important to
acknowledge the impact of normal ageing on our emotion regulation systems.
Research shows that as we age, our ability to regulate our emotions remains stable,
and in some cases improves (Kennedy, Mather & Carstensen, 2004), due to a desire to
maintain emotional well being and minimise negative affect. However, our ability to
accurately recognise emotions on other people’s faces diminishes, and research
indicates that this decline can begin as early as our third decade (e.g. Mill, Allik,
Realo & Valk, 2009). By the time we reach late adulthood, around 60 years of age,
there is a noticeable deficit in our ability to read other people’s emotions correctly
(e.g. Calder, Keane, Manly, Sprengelmeyer, Scott, Nimmo-Smith et al., 2003; Mill et
al., 2009). This deficit has been noted to differentially affect specific emotions; whilst
the ability to recognise emotions such as happiness and disgust remains relatively
intact (Suzuki, Hoshino, Shigemasu & Kawamura, 2007), the ability to recognise
others such as fear, sadness and anger, becomes more problematic (Sullivan &
Ruffman, 2004).
Neurobiology of emotion recognition

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There are several potential explanations as to why people find it increasingly difficult
to recognise emotions as they age, and why this deficit becomes more pronounced
when neurodegeneration starts to occur. The amygdala is a key structure of the brain
involved with processing of emotions and the perception of emotions in others
(Adolphs, 2002). Specifically, it is involved in linking the perception of someone’s
face with the retrieval of knowledge about its emotional context and meaning
(Adolphs, 2002). The role of the amygdala in recognition of facial expressions is
supported by studies of patients with lesions to this area; results show that these
individuals are no longer able to recognise emotions in faces, which is particularly
noticeable in relation to negative emotions, such as fear and anger (Adolphs, 1999).
Areas such as the cingulate gyrus and the superior temporal sulcus are also thought to
be involved in emotion recognition, given their role in linking sensory input and
processing of facial cues with emotion (Hadland, Rushworth, Gaffan & Passingham,
2003).
As we age, key structural and functional changes occur in these areas of the
brain, which could account for changes to our emotional recognition abilities (Jack,
Petersen, Xu, Waring, Obrien, Tangalos, et al., 1997). Dementia is associated with
heightened neurodegeneration relative to normal ageing, therefore it serves that these
brain areas will demonstrate greater levels of degeneration in those with MCI and
dementia, and therefore these individuals will experience greater deficits in emotion
recognition. Research suggests that this is the case, with evidence from neuroimaging
studies demonstrating that there are key structural and functional changes to medial
temporal lobe areas in those with mild AD (Braak & Braak, 1991; Jack et al., 1997).
As MCI is seen as an early indicator of AD in many cases, this evidence suggests that
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there is likely to be the beginnings of neurodegeneration in these key areas in MCI,
which progresses with cognitive decline.
Emotion recognition in depression
It is important to understand how emotion recognition is affected in those with major
depression without cognitive impairment, in order to better understand the potential
relationship between emotion recognition, MCI and depression. Research into
emotion recognition in those with major depression has highlighted that certain
deficits in emotion recognition are apparent among this group. There is evidence for
biases in the processing of emotions in those with depression, in that depressed
individuals tend to rate neutral faces as sad more often than those without depression
(Bourke et al., 2010). Similarly, research suggests that there are deficits in recognising
particular emotions such as disgust in this population (Bediou, Brunelin, d'Amato,
Fecteau, Saoud, Hénaff, et al., 2012; Douglas & Porter, 2010), as well as an inability
to discriminate between emotional versus neutral faces (Anderson, Shippen, Juhasz,
Chase, Thomas, Downey et al., 2011). Together, this evidence points to emotion
recognition deficits in those with depression, and these studies will be reviewed in
more depth later.
Rationale and aims of the current review
Emotion recognition is a vital part of human social functioning, allowing us to relate
to others around us in appropriate, informed ways. The ability to detect emotions in
other people’s faces is thought to be integral to successful social functioning, as well
as survival through detection of threat, for example (Brune & Brune-Cohrs, 2006).
Impairment in emotion recognition, as seen in those with dementia, is therefore likely

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to have a vast impact on someone’s social functioning and quality of life.
Without the ability to read others’ emotions, behavioural and psychological
functioning is likely to be affected, with the potential for an increase in inappropriate
or withdrawn behaviours, for example. In dementia, behavioural and psychological
changes have been found to lead to difficulties in other areas of functioning. Amieva,
Phillips, Della Sala & Henry (2004) found that behavioural changes were related to
difficulties with interpersonal relationships, while other research has found an
increase in carer burden due to difficulty coping with these changes in a loved one
(Brodaty, McGilchrist, Harris & Peters, 1993; McCade, Savage, Guastella, Hickie,
Lewis & Naismith, 2013). These changes have also been found to lead to early
institutionalisation of those with dementia (Brodaty et al., 1993), as carers feel unable
to continue caring for people at home. It is therefore vital to understand the role that
emotion recognition has on social functioning at the very earliest stages of dementia,
as it is at this stage that interventions are likely to have the most impact and have the
potential to avoid or reduce these negative consequences.
Thus far, research has focused on either emotion recognition deficits in MCI,
or psychosocial functioning (e.g. Henry, von Hippel, Thompson, Pulford, Sachdev &
Brodaty, 2012), while the interaction between emotion processing deficits and
psychosocial functioning difficulties has gone relatively under-investigated. McCade,
Savage, Guastella, Hickie et al. (2013) identified that poorer recognition of anger in
those with aMCI was associated with increased carer burden, suggesting that these
deficits are having some real-life implications, yet the impact on those with MCI
themselves remains under investigated. This has been frequently suggested as an area
for future research (McCade et al., 2012; Henry, Thompson, Ruffman, Leslie, Withall,
Sachdev, et al., 2009), demonstrating the need for the present investigation. The
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current review will focus on the existing research in emotion recognition deficits in
MCI and people with major depression, with the aim of investigating the link between
emotion recognition and psychosocial functioning. Specifically, does depression in
those with MCI lead to higher level of emotion recognition impairment, or would the
noted emotion recognition deficits somehow lead to increased levels of depression in
this group.
Method
The literature for this review was gathered from the MedLine and PsycINFO
databases, between January and March 2014. The search was limited to English
language peer-reviewed journal articles, with key terms of “mild cognitive
impairment” and “MCI”. The other search terms were “emotion”, “emotion
recognition”, “emotion processing”, “face processing” and “social cognition”. For the
depression search, the key term was “depression” with other search terms limited to
“facial perception”, and “facial emotion processing”. There were no date restrictions
on the search, with all articles up to March 2014 included. The reference lists of
identified papers were checked for other relevant articles.
For the MCI literature, articles were only included if they were looking at
emotion recognition in people with age-related cognitive impairment. Only articles
that had clearly defined the criteria used to diagnose the MCI group, alongside
neuropsychological testing to support diagnosis, were reviewed. Those that focused
on emotion recognition in cognitively healthy participants or those with psychiatric
conditions other than depression were excluded from the review. For the depression
search, only those that included currently depressed participants were reviewed. One
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study (Schefter et al., 2013) was excluded due to focusing on memory for emotional
faces rather than the processing of facial expressions of emotion, and another
(Douglas, Porter, Knight & Maruff, 2011) was excluded as it repeated findings
reported in another study included in the review (Douglas & Porter, 2010). There
were a total of 18 studies eligible for inclusion in the current review.
In order to critically review the selected papers, the Critical Appraisals Skills
Programme system for reviewing qualitative research will be adopted (www.casp-
uk.net), as this provides clear criteria against which to analyse research studies. The
review will be organised into research focusing on emotion recognition in MCI and
research focusing on emotion recognition in depression, with similar studies grouped
together for ease of understanding.

121
Figure 1. Flowchart of method used to select relevant articles.
Potentially eligible records identified

through database searches (N):
PsycINFO: 180
MedLine: 160
Exclusion of duplicate
records.
N= 63
Potentially eligible records.

N= 277
Exclusion of records that

did not meet criteria.
N= 5
Full text articles assessed

for eligibility.
N= 272
Exclusion of articles after screening.

Reason 1: did not focus on people
with MCI; N= 30
Reason 2: did not focus on people
with depression currently; N= 15
Reason 3: did not focus on emotion
recognition/ processing; N= 209
Articles included in the

review.
N= 18
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Results
Emotion recognition in Mild Cognitive Impairment
Participant characteristics and diagnostic criteria used
Across the 10 emotion recognition (ER) and mild cognitive impairment (MCI)
studies, the mean age of participants in the MCI group ranged from 63 years
(McCade, Savage, Guastella, Lewis et al., 2013) to 79 years (Teng et al., 2007). There
was a wide range of education levels within the MCI groups, from 9 to 18 years
(Spoletini et al., 2008; Teng et al., 2007), although this was not uniformly reported.
Education is an important factor to acknowledge as it can influence outcome on
neuropsychological assessment and act as a protective factor for cognitive decline.
Sample size of the MCI groups varied across the studies, from 9 participants (Teng et
al., 2007) to 50 participants (Spoletini et al., 2008). The majority of studies were
carried out in European countries (n=5), and the majority recruited participants from
memory clinics (n=7).
Table 1 below summaries the main descriptive features of the studies reviewed
for emotion recognition in people with MCI, including participant demographics and
the nature of the emotion recognition tasks used.

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Table 1
Summary of emotion recognition research in MCI
No. & type of
Author Participant characteristics Tasks & control tasks Results
participants
Bediou et 10= aMCI Age= 73 ± 9; 50% male; MMSE= 27 ± 2 ER task= Photographs of faces. Name the emotion expressed; emotions morphed aMCI group were not
al., 2009 with neutral expressions; happiness, fear, anger, disgust, neutral. significantly impaired in
10= mild AD Age= 72 ± 9; 50% male; MMSE= 21 ± 2 emotion recognition
relative to controls.
10=FTD Age= 67 ± 7; 50% male; MMSE= 24 ± 4 Control task= indicate gender of faces.
10= HC Age= 70 ± 6; 50% male; MMSE= 30

Fujie et al., 16= aMCI Age= 72 ± 7; 25% male; MMSE= 27.2 ± 2; ER task= B&W photographs of faces. Name the emotion expressed; happiness, aMCI group significantly
2008 Ed= 11 ± 2 sadness, fear, anger, disgust, surprise, neutral. impaired at recognising
anger and sadness. This
16= HC doing facial Age= 74 ± 3; 28% male; MMSE= 28.8 ± 1.4; Control task= Benton Facial Recognition task. Identify faces from distractors. impairment was related
emotion recognition task Ed= 12 ± 2 to pathology of the
16= HC doing Diffusion Age= 71 ± 4; 25% male; MMSE= 29.2 ± 1.2; Diffusion Tensor Imaging= Calculation of FA of the UF uncinate fasciculus in the
Tensor Imaging Ed= 11.8 ± 2 brain.
Henry et al., 36= MCI Age= 78 ± 4; 53% male; MMSE= 27.6 ± 1.9; ER task= B&W photographs of faces. Name the emotion expressed; happiness, MCI group significantly
2012 Ed= 11.9 ± 3.6 sadness, fear, anger, disgust, surprise. impaired in emotion
recognition relative to
26= mild dementia Age= 80 ± 6; 62% male; MMSE= 25.9 ± Biological motion= point-light animations depicting bodily actions e.g. swimming controls.
3.11; Ed= 11.4 ± 3.7 & name the action; or bodily emotions & name the emotion; happiness, anger,
fear, sadness.
38= HC Age= 77 ± 4; 40% male; MMSE= 28.8 ±
0.98; Ed= 11.5 ± 3.4
Henry et al., 38= MCI Age= 79 ± 5; 50% male; MMSE= 27.9 ± 1.5; ER task= B&W photographs of faces. Name the emotion expressed; happiness, Tendency for MCI group
2009 Ed= 11.6 ± 3.6 sadness, fear, anger, disgust, surprise. to perform worse in
emotion recognition
34= dementia Age= 79 ± 6; 47% male; MMSE= 26 ± 3.6; relative to controls.
Ed= 11.4 ± 3.6
34= HC Age= 77 ± 4; 44% male; MMSE= 28.6 ± 1.4;
Ed= 11.6 ± 3.6
McCade et 27= naMCI Age= 65 ± 9; 48% male; MMSE= 28.6 ± 1.4; ER task= B&W photographs of faces. Name the emotion expressed; happiness, aMCI significantly
al., 2013 Ed= 13.9 ± 3.7 sadness, fear, anger, disgust, surprise. worse at recognising
29= aMCI Age= 69 ± 7; 41% male; MMSE= 27.2 ± 1.8; Control task= Short-form Benton Facial Recognition task. Match faces from anger relative to
Ed= 13.8 ± 3.6 different angles. controls. naMCI
performed equal to
22= HC Age= 65 ± 8; 41% male; MMSE= 29.3 ± World Health Organisation Disability Assessment Schedule II and Zarit Burden controls.
0.84; Ed= 12.7 ± 2.8 Interview= measures of disability and carer burden.
McCade et 18= MD naMCI Age= 64 ± 8; 39% male; MMSE= 28.6 ± ER task= B&W photographs of faces. Name the emotion expressed; happiness, aMCI significantly
al., 2013 1.24; Ed= 13.6 ± 3.1 sadness, fear, anger, disgust, surprise. worse at recognising
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19= MD aMCI Age= 70 ± 7; 37% male; MMSE= 26.9 ± 1.8; Emotion identification= B&W photographs of faces; happiness, sadness, fear, anger relative to
Ed= 13.6 ± 3.7 anger, disgust, surprise & neutral; spontaneous naming of emotion. controls. naMCI
19= HC Age= 65 ± 8; 47% male; MMSE= 29.3 ± 0.8; ER task with and without facial cues= stills from film clips, some faces erased; performed equal to
Ed= 12.9 ± 2.8 name the emotion from cues given; happiness, sadness, fear, anger, disgust, controls.
surprise & neutral.
Control task= Short-form Benton Facial Recognition task. Match faces with a
target from different angles.
Spoletini et 50= aMCI Age= 71 ± 7; 54% male; MMSE= 26.6 ± 2.5; ER task= colour photographs of faces; select the emotion expressed; happiness, aMCI group significantly
al., 2008 Ed= 9.8 ± 4.6 sadness, fear, anger, neutral. For each emotion, there is a “high intensity” and “low impaired at recognising
50= mild AD Age= 72 ± 7; 50% male; MMSE= 22 ± 3.3; intensity” expression. fear at a low-intensity
Ed= 7.9 ± 4.6 relative to controls.
50= HC Age= 72 ± 7; 44% male; MMSE= 27.8 ± 1.8; Control task= Short-form Benton Facial Recognition task. Match faces from
Ed= 9.1 ± 4.2 different angles.
Teng et al., 9= SD aMCI Age= 79 ± 4; 78% male; MMSE= 26.9 ± 2.8; ER task= B&W photographs of faces; 4 subtests including discriminating, naming, MD aMCI group
2007 Ed= 18.2 ± 4.5 selecting or matching emotions; happiness, sadness, fear, anger, neutral. significantly impaired at
14= MD aMCI Age= 73 ± 8; 50% male; MMSE= 26.4 ± 2.7; emotion recognition
Ed= 15.1 ± 2 relative to controls.
68= HC Age= 70 ± 10; 57% male; MMSE= 29.2 ± Control task= facial identity discrimination; identify whether faces match each Could not discriminate
0.9; Ed= 17 ± 2.9 other between emotions.
Varjassyovà 10= SD aMCI Age= 74 ± 5; 30% male; MMSE= 28.4 ± 1.8 ER task= B&W photographs of faces. Name the emotion expressed; happiness, MD aMCI group
et al., 2013 sadness, fear, anger, disgust, surprise. significantly impaired at
12= MD aMCI Age= 78 ± 10; 50% male; MMSE= 26.8 ± 2.3 Famous faces identification= naming pictures of famous people emotion recognition
relative to controls.
18= HC Age= 69 ± 7.6; 33% male; MMSE= 29.3 ±
0.9
Weiss et al., 21= SD aMCI Age= 73 ± 7; 28% male; MMSE= 27 ± 1; ER task= colour photographs of faces; select the emotion expressed; happiness, MD aMCI group
2008 Ed= 10.4 ± 3.9 sadness, fear, anger, neutral. significantly impaired at
30= MD aMCI Age= 74 ± 7; 33% male; MMSE= 26 ± 1.1; emotion recognition
Ed= 9.8 ± 2.7 relative to controls.
30= mild AD Age= 77 ± 8; 33% male; MMSE= 22.5 ± 1.5;
Ed= 9.7 ± 2.4
23= moderate AD Age= 80 ± 6; 30 % male; MMSE= 16.3 ± 2.7;
Ed= 8.7 ± 2
35= HC Age= 71 ± 8; 28% male; MMSE= 28.9 ± 1;
Ed= 10.7 ± 3.3
HC= Healthy control. aMCI= amnestic mild cognitive impairment. AD= Alzheimer’s disease. SD= single domain. MD= multiple domain. Ed= years of education. MMSE= Mini mental state
examination; out of 30, ≥25 is normal, 24-21 mild dementia, 20-10 moderate dementia, <10 severe dementia. ER task= emotion recognition task. Control task= used to check for deficits in general
perception of faces.
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Studies differed in their diagnosis of MCI. Four studies used the original criteria by
Petersen et al. (1999), in which people presenting with memory deficits in the absence
of any other cognitive impairment were studied (the amnestic MCI subtype; Bediou et
al., 2009; Fujie et al., 2008; Spoletini et al., 2008; and Teng et al., 2007). Across the
remaining studies there was a more diverse set of diagnostic criteria used. Weiss et al.
(2008) used the modified Petersen et al. (2001) criteria, looking at those with single
and multiple domain MCI. Others adopted the criteria of Petersen (2004) that accepts a
more heterogeneous view of MCI; these studies included participants in the non-
amnestic MCI category (naMCI), where people do not report a memory complaint
(Henry et al., 2012; McCade, Savage, Guastella, Hickie et al., 2013; McCade, Savage,
Guastella, Lewis et al., 2013), with the exception of Varjassyovà et al. (2013), who
included only aMCI participants. Henry et al. (2009) used the criteria set out by
Petersen (2007) and Henry et al. (2012) were unique in using the criteria set out by
Winblad, Palmer, Kivipelto, Jelic, Fratiglioni, Wahlund et al. (2004). Both Henry et al.
studies did not stipulate whether the MCI group was divided into subtypes, therefore it
is unknown whether the sample was made up of one subtype or a mixture of the two.
In order to assess cognitive impairment, a combination of cognitive screening
and neuropsychological assessments were carried out. All studies reported the Mini
Mental State-Examination (MMSE; Folstein, Folstein, & McHugh, 1975) as a measure
of general cognitive functioning, with some adding that participants had to score
greater than or equal to 24 (Fujie et al., 2008; McCade, Savage, Guastella, Hickie et
al., 2013; McCade, Savage, Guastella, Lewis et al., 2013; Teng et al., 2007) or 23 to be
included (Spoletini et al., 2008). For the neuropsychological assessment, the majority
of studies defined cognitive impairment as a score of 1.5 standard deviations below
age-adjusted norms, the widely accepted cut-off for cognitive impairment

126
(Alzheimer’s Association, 2010); however one study did not report how they set this
(Varjassyovà et al., 2013). All studies covered assessment of memory, language and
executive functioning, with others going into more thorough assessment with the
inclusion of visuospatial abilities, attention and processing, psychomotor skills and
verbal learning (Henry et al., 2012; McCade, Savage, Guastella, Hickie et al., 2013;
McCade, Savage, Guastella, Lewis et al., 2013; Spoletini et al., 2008; Teng et al.,
2007; Varjassyovà et al., 2013; Weiss et al., 2008).
The studies took different approaches in terms of exclusion criteria, however
they all made every effort to reduce any confounding variables that could influence the
reliability of their results. All stated that those with a psychiatric, neurological or
medical illness, apart from cognitive impairment, and any visual or hearing difficulties
that would impact on their performance were excluded. Some adopted more stringent
exclusion criteria, to exclude those with substance addiction, those taking psychiatric
medications and those with brain lesions. All studies recruited healthy controls as a
comparison group, and these were all age and education matched with the MCI
participants, with the exception of Varjassyovà et al., (2013), who controlled for these
differences in their analysis. This increases the validity of the findings as it prevents
group demographic differences influencing the results.
Facial emotion recognition stimuli used
Considering the type of stimuli the studies employed for the ER tasks, the majority of
studies used static photographs of faces, either black and white (from the Ekman &
Friesen ‘Pictures of Facial Affect’, 1976) or colour pictures of men and women (from
the Penn Emotion Recognition Test (ER40) by Gur, Sara, Hagendoorn, Marom,
Hughett, Macy et al., 2002). The Ekman & Friesen (1976) stimuli is widely used to
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investigate emotion recognition, and is made up of pictures of faces depicting the six
basic emotions of happiness, sadness, fear, surprise, anger & disgust. The ER40 uses
colour images of faces depicting happiness, sadness, fear, anger and neutral
expressions. Both sets of stimuli provide participants with a choice of answers, and
they need to pick the one that best describes the emotion shown with no time
restrictions in place. Teng et al. (2007) used the Florida Affect Battery (FAB; Bowers,
Blonder, & Heilman, 1999), made up of black and white photographs of women.
Bediou et al. (2009) used their own set of stimuli, where faces depicting happiness,
fear, anger and disgust were morphed with a neutral face, to create faces displaying
emotions at different intensities. The range of emotions investigated varied across all
the studies. Happiness, fear and anger were included in all the studies, sadness was
included in all but one, and disgust and surprise were looked at in all but three studies.
This variety in emotions investigated means it is slightly harder to draw firm
conclusions about whether specific emotions are differentially affected by
neurodegeneration.
Although widely used in this type of research, the stimuli used have limitations,
the main one being that static photographs do not represent real-life facial emotions,
which are much more dynamic. Similarly, in reality you use other information to judge
someone’s emotion, such as their body language or tone of voice, and this information
is not available to participants. This could limit the validity of these stimuli, as they are
not reflective of everyday emotion recognition. The photographs also consist of mainly
Caucasian individuals, meaning that they are culturally limited to suit Western
participants.
The majority of studies used a control task in order to rule out any difficulties
with general facial processing that could impact the results. The Short Form Benton
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Facial Recognition Test (Benton, Sivan, Hamsher, Varney & Spreen, 1994) was used
by the majority of studies (Fujie et al. 2008; McCade, Savage, Guastella, Hickie et al.,
2013; McCade, Savage, Guastella, Lewis et al., 2013; Spoletini et al., 2008), where
participants must match a face to a target face, shown from different angles. Other
studies used simple identity or gender discrimination tasks (Bediou et al., 2009; Teng
et al., 2007), and the remaining four studies did not use a control task, making it harder
to rule out facial perception deficits influencing the results in these studies.
Analysis of the literature
For the analysis, studies have been grouped together in terms of the characteristics of
the MCI groups used.
The literature review by McCade et al. (2012) reviewed 6 studies. There was a
clear research question and rationale for the review, given that there was very little
research into ER in those with MCI at the time, therefore little knowledge about how
this may be affected at the earliest stages of dementia. Similarly to the present review,
they only included papers that were English language that had been published in peer-
reviewed journals. This excludes other research such as dissertations, which could also
be contributing to the knowledge base. When reviewing the quality of these studies,
the authors do not make many comments on their scientific rigour, only briefly
mentioning that there is a large range of stimuli, sample sizes and methodologies used,
and could therefore have developed their review further in this respect. However,
presentation of the findings was clear and concise, grouping all the six studies together
for analysis, with variations in the results found discussed thoroughly. The conclusions
drawn from the review are clear in saying that ER abilities in those with MCI are
compromised, despite this research being in its infancy, therefore it is a highly useful
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review as it was the first to synthesise the existing research. They conclude that there is
a strong need for further research in the area, especially into how ER deficits may
impact on psychosocial functioning, boosting the rationale for the present review.
Studies focusing on MCI without subtypes
Henry et al. (2009 & 2012) looked at facial ER in a generic group of MCI participants,
so did not stipulate the MCI subtypes present within the participant population. Both
studies used the Ekman & Friesen (1976) stimuli, and carried out analysis of variance
(ANOVA). Henry et al. (2009) reported a tendency for the MCI group to perform
worse compared to controls at recognition of emotions, however this was non-
significant (p= 0.062). However, emotion recognition was positively correlated with
the ability to differentiate between high and low threat situations in those with MCI (r=
0.48, no p value reported), suggesting that ER and the ability to detect threat are
related. In Henry et al. (2012), the MCI group were found to perform significantly
worse than controls at ER, performing equally to those with dementia (p=<0.001).
Emotion recognition ability was positively correlated with semantic memory in this
study, with a strength of r= .3, p value not reported. However, for this analysis the
MCI and dementia participants were grouped together and therefore no conclusions
can be made about whether this relationship would remain if the MCI group were
analysed separately. Interestingly, this study also included a motion-related test of ER,
aimed at testing participants’ ability to recognise emotions from body movements.
Participants had to suggest the emotion depicted by a point-light animation of a body
acting out different emotions. For example, walking with head drooped and arms
hanging low to demonstrate sadness. The MCI participants did not significantly differ
from controls. It is unfortunate that the MCI groups were not broken down into
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subtypes, as this would have provided further understanding about how ER ability is
differentially affected across the subtypes. The results cannot be generalised to all
those with MCI, as it is unclear which group they relate to. However, they suggest that
there is a tendency for those with MCI to be impaired in ER, and given the strict
exclusion criteria, this is less likely to be due to factors other than more extensive
neurodegeneration compared to controls.
Studies focusing on amnestic MCI
Considering those studies that investigated amnestic MCI, including both single and
multiple domain MCI, the study by Fujie et al. (2008) is unique in that the authors
combined ER measurements with diffusion tensor imaging (DTI) of the uncinate
fasciculus (UF). This is a structure in the brain that connects the anterior temporal lobe
to the frontal lobe, and is thought to be integral to emotion processing (Yasmin,
Nakata, Aoki, Abe, Sato, Nemoto et al., 2008). They aimed to use DTI to analyse the
structure of the UF in those with amnestic MCI, in order to investigate the relationship
between neurodegeneration of this area with potential ER difficulties, something that
had not previously been considered. An analysis of covariance (ANCOVA) was used
to control for age and education, to prevent any group differences within these
variables influencing the results. The results showed that the amnestic MCI group was
significantly worse at recognising anger and sadness compared to controls (p=0.029
and p= 0.013 respectively). The UF was found to be abnormal relative to controls in
those with aMCI (p= 0.046), and this pathology was related to the impairment found in
emotional recognition. Specifically, UF pathology was related to difficulty recognising
sadness (r=0.54, p= 0.033). This suggests that this area of brain degeneration could be
impacting on the ability of those with aMCI to recognise this emotion in others. They
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recruited a relatively small sample size for both the aMCI and the healthy control
group, which may have impacted on the strength of the results found; there is no power
reported in the results and therefore it is difficult to make a conclusion about this.
Bediou et al. (2009) and Spoletini et al. (2008) also looked at amnestic MCI.
They describe clear rationale for using aMCI participants, as this is more likely to
progress onto Alzheimer’s than the non-amnestic subtype, and is more informative for
disease progression. The studies used similar stimuli in that the faces displayed
emotions at different intensities, rather than a more uniform presentation of facial
emotion. Bediou et al. (2009) reported that the aMCI group did not differ from controls
in the ability to detect emotion. However, this could be due to the small sample size
they used, with only 10 participants in each group meaning there could not be enough
statistical power for any differences to reach significance. Spoletini et al. (2008) had a
larger sample size of 50 participants. They found that for recognition of low-intensity
expressions of emotion, the aMCI group performed significantly worse than controls,
which was specifically related to impairment at recognising fear. These results
therefore suggest that in aMCI, there is impairment in ER ability, which has been
found to effect certain emotions, such as sadness and fear, greater than others. As Fujie
et al. (2008) have related this impairment with neurodegeneration in certain brain
areas, it is likely that this impairment would progress as the cognitive impairment also
progresses.
Studies focusing on amnestic and non-amnestic MCI
The studies by McCade, Savage, Guastella, Hickie et al. (2013) and McCade, Savage,
Guastella, Lewis et al. (2013) looked at individuals with both amnestic MCI and non-
amnestic MCI, with impairment in multiple cognitive domains. The rationale of

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including only those with multiple domain MCI was that this subtype is more sensitive
to the development of Alzheimer’s than the single domain subtype as they have more
extensive neurodegenerative pathology, and provide a clearer understanding of how
the disease may progress. Emotion recognition in naMCI had not been previously
studied; therefore this research provided further knowledge about how ER changes
across the subtypes. Using the Ekman & Friesen stimuli, both studies found that those
with MD aMCI were impaired in the recognition of anger compared to controls, with
medium effect sizes reported in both (p=<0.001 and p=0.003 respectively), while the
naMCI group did not differ from controls in either study. This adds to the previous
research suggesting the ER deficits do exist in those with MCI, especially for negative
emotions, but goes further to suggest that this only applies to the amnestic subtype, as
those with naMCI performed equally to the control group.
McCade, Savage, Guastella, Lewis et al. (2013) also asked participants to name
emotions from black and white photographs (Tottenham, Tanaka, Leon, McCarry,
Nurse, Hare et al., 2009), without a list of prompts. An ANOVA revealed that those
with aMCI were significantly impaired in the recognition of overall emotions
compared to controls, with a large effect size (r= -0.52, p=0.001). They were also
impaired in the recognition of anger specifically, compared to both controls and the
naMCI participants (medium effect sizes of r=0.41 for both). Interestingly, the authors
also looked at how participants recognised emotions from body language, both with a
face and with the face obscured, using still clips from films as the stimulus. They
reported that aMCI participants were impaired at recognising emotions when the face
of the person was obscured, with a large effect size (d= -0.81, p=0.004). Once the
authors controlled for cognitive performance, they found that ER deficits remained
only for the body language task, suggesting that cognitive decline only partially
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accounts for ER deficits. Since these deficits remained for ER using bodily cues, this
suggests that those with aMCI may be impaired at using real-life cues to understand
someone’s emotion.
Studies focusing on single and multiple domain amnestic MCI
The remaining studies (Teng et al., 2007; Varjassyova et al., 2013; Weiss et al., 2008)
split their participants into single and multiple domain (SD and MD) amnestic MCI
groups, without including non-amnestic MCI. This was to allow for a more thorough
understanding of how ER abilities may be affected in those most at risk of developing
Alzheimer’s disease (Petersen et al., 1999). These studies all reported significant ER
deficits in those with multiple domain aMCI but not for single domain aMCI, who
performed equally to controls, suggesting the more extensive neurodegeneration in
MD aMCI involves areas in the brain used for emotion recognition. Varjassyova et al.
(2013) controlled for cognitive performance on the MMSE, and found that the deficits
were still significant (p=0.041), suggesting that degeneration to other brain areas in
multiple domain aMCI could be causing this deficit. However, this study had a small
sample size for both aMCI groups, meaning that more robust findings could occur with
larger groups. Weiss et al. (2008) found that as well as overall deficits (p=<0.001), MD
amnestic MCI were also significantly impaired at recognising sadness, fear and neutral
facial expressions, compared to controls and SD aMCI participants. This study also
measured levels of depression, which was associated with poorer ER of all emotions
(p=0.001); however, analysis with the Sobel test (Preacher & Leonardelli, 2010) found
that depression did not mediate the deficits found in those with MD aMCI.
Teng et al. (2007) found that different subtests within their test battery yielded
different outcomes in ER ability. Those with multiple domain aMCI were impaired on
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the ‘facial affect discrimination’ test relative to controls (p=0.012), where they had to
say whether two pictures of faces were depicting the same emotion or not. The single
domain aMCI group did not differ from controls. However, there was a small sample
size, therefore some group differences may have been found for some of the other tests
had this been larger. These studies also add support to the possibility that ER deficits
are found to vary among the different subtypes of MCI, in that those with amnestic
MCI, particularly the multiple domain aMCI subtype, are more likely to demonstrate
these difficulties.
Emotion recognition in depression
Participant characteristics and diagnostic criteria used
Across the five studies included in this review, the mean age of participants was 38
years of age, a much younger cohort than those in the MCI studies, as expected given
the age at which cognitive impairment commences. The years of education were
reported in three of the studies, and ranged from 12.1 years (Bediou, Krolak-Salmon,
Saoud, Henaff, Burt, Dalery et al., 2005) to 14.5 years (Anderson, Shippen, Juhasz,
Chase, Thomas, Downey et al., 2011). The sample sizes of the depression group also
varied, from 20 to 68 (Bediou et al., 2005; Douglas & Porter, 2010).
Table 2 below summaries the main descriptive features of the studies reviewed for
emotion recognition in people with depression, including participant demographics and
the nature of the emotion recognition tasks used.

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Author No. & type of participants Participant characteristics Tasks Other information
Anderson et 30= depression Age= 39 ± 11; 27% male; Ed= 14.5 ± 3; ER task= Photographs of faces. Name the emotion Participants were assessed over a two-year period.
al., 2011 MADRS= 24.3 ± 6.8 expressed; emotions morphed with neutral The remission group had to have at least two
expressions; happiness, fear, anger, disgust, episodes of major depression in the past.
99= remission Age= 34 ± 11; 20% male; Ed= 16.3 ± 2.7; neutral.
MADRS= 3.6 ± 3.3
101= HC Age= 30 ± 10; 43% male; Ed= 16.2 ± 2.5;
MADRS= 1.3 ± 1.8
Bediou et al., 20= depression Age= 39 ± 10; 65% male; Ed= 12.1 ± 2.9; ER task= colour photographs of faces; name the They chose not to investigate sadness, anger or
2005 MADRS= 23.5 ± 8.6 emotion expressed; emotions morphed with neutral surprise as these can be confused with other facial
expressions; disgust, fear, happiness. expressions.
29= schizophrenia Age= 35 ± 10; 55% male; Ed= 11.3 ± 2.9 Control task= gender identification; colour
photographs of faces; morphed together, moving
20= HC Age= 26 ± 9.5; 65% male; Ed= 13.3 ± 1.7 from "no gender" to "100% male or female"; select
the gender
Douglas & 68= depression Age= 40 ± 10; 41% male ER task= Pictures of faces; name the emotion The depression group were all inpatients at the time
Porter, 2010 expressed; emotions morphed with neutral of testing.
50= HC Age= 39 ±10; 37% male expressions; happiness, fear, anger, disgust,
sadness, neutral.
Liu et al., 27= depression Age= 29 ± 9; 59% male; Ed= 13/3 ± 3 ER task= Pictures of faces from Ekman & Friesen Carried out among a Chinese population, using a
2012 stimuli, morphed to show different intensities; revised version of Ekman & Friesen (1976) using
37= HC Age= 28 ± 7; 65% male; Ed= 14.2 ± 3.3 happiness, sadness, anger, fear. Asian faces.
Schaefer et 34= depression Age= 45 ± 13; 56% male; MADRS= 32.2 ± 4.9 ER task= B&W photographs of faces; morphed Used the Ekman & Friesen stimuli of faces, and
al., 2010 with neutral expressions from 0-100% intensity; software to morph these pictures continuously to
21= bipolar disorder Age= 47 ± 12; 38% male; MADRS= 31.1 ± 6.6 happiness, sadness, anger, disgust, surprise & fear. show different levels of intensity.
Select the emotion as soon as you recognise it.
24= HC Age= 45 ± 14; 50% male; MADRS= 1.5 ± 2.5
Table 2
Summary of facial emotion recognition research in depression
HC= Healthy control. Ed= years of education. ER task= emotion recognition task. Control task= used to check for deficits in general perception of faces. MADRS= Montgomery-Asberg
Depression Rating Scale; out of 60, 7-19 is mild depression, 20-34 is moderate depression, >34 is severe depression.
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All the experimental studies reviewed employed similar methods of diagnosing and
measuring depression. The DSM-IV criteria for major depressive disorder was used in
all studies (American Psychiatric Association, 1994), as well as the Montgomery-
Asberg Depression Rating Scale (MADRS; Montgomery & Asberg, 1979) as a
measure of depression severity. Two of the five studies carried out
neuropsychological testing. Shaefer, Baumann, Rich, Luckenbaugh & Zarate Jr
(2010) looked at perceptual abilities and language, and Douglas & Porter (2010)
stated that neuropsychological assessment was conducted but did not report in what
areas. Exclusion criteria across the studies included substance abuse, current
psychosis, any neurological or medical conditions that would influence performance,
medications that could impact on neuropsychological performance, the presence of
other psychiatric disorders and any form of dementia. This reduces the influence that
confounding variables can have on the results, increasing the reliability and validity.
Healthy controls were recruited as comparisons for all groups, and had to be free of
any current psychological illness. The depression research did not carry out control
tasks to test for facial perception, meaning the participants could have had difficulty
with this task, rather than specific emotion recognition deficits, a potential
confounding variable to these results.
Analysis of the literature
The literature review carried out by Bourke, Douglas & Porter (2010) reviewed 40
studies looking into ER abilities in those with depression. There was a clear rationale
for the study, as it would allow further understanding of the potential impact ER
deficits could have on the social and affective symptoms found in depression. The
overall results suggest that those with depression do indeed have deficits in facial ER
137
abilities, in that they tend to have a negative bias. This means that they rate neutral or
ambiguous expressions as more unhappy than control participants. Similarly, people
with depression tend to show increased vigilance and selective attention towards sad
facial expressions and away from happy expressions, which would also impact on
how accurately these facial expressions are recognised. The authors recommended
that future research should look at whether these difficulties vary within the
depression diagnosis, for example would ER be worse if the depression was more
severe, or if there was psychosis present as well.
The meta-analysis carried out by Kohler, Hoffman, Eastman, Healy & Moberg
(2011) aimed to identify the magnitude of the deficit in facial emotion perception in
depression and bipolar disorder, as well as any variables that moderate this
impairment, such as clinical characteristics and task design. The methodology was
clearly explained, including an exclusion of publication bias influencing results
through non-significant rank-correlation tests and a symmetrical funnel plot,
improving the reliability of the results found. The authors included 51 studies, and
found that those with major depressive disorder had moderate impairments in ER
ability, with a medium effect size of d= -0.549. This deficit was found for both
identification and discrimination of facial emotions. A regression analysis highlighted
that a higher self-reported score on the Beck Depression Inventory (BDI; Beck, Ward,
Mendelson, Mock & Erbaugh, 1961) was a significant predictor of poorer ER ability
(z= -4.81, p<0.001). Unfortunately, analysis for deficits in separate emotions, such as
sadness or anger, was carried out with depression and bipolar research together, and
therefore conclusions cannot be made about how depression affects specific emotions
differently. However, across both disorders, the effect sizes observed for each
emotion were small, which the authors suggest is due to small sample sizes in studies
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that reported on this. The authors suggested that future research should focus on the
psychosocial impact of these emotion perception deficits in those with mood
disorders, something that is lacking for both people with depression and those with
MCI.
Quantitative studies on emotion recognition and depression
The five studies reviewed all used morphed faces of emotions, allowing the
researchers to display facial expressions of emotion at different intensities using
different computer software. These stimuli carry the same limitations to those used in
the MCI research. Douglas & Porter (2010) carried out an ANOVA analysis in order
to identify group differences between controls and those with depression using a
version of the Ekman & Friesen (1976) faces (developed by Harmer, Perrett, Cowen
& Goodwin, 2001). They found that controls were significantly better at recognising
disgust than the depression group, with a large effect size of 0.7 (p<0.01) for those on
medication, and a large effect size of 0.68 for those who were unmedicated (p=0.01).
Those with depression were also more likely to interpret neutral faces as sad
compared to controls, with a small effect size of 0.41 (p=0.03). This supports the idea
that those with depression have a negative bias for facial expressions, as well as
adding to research that suggests that recognition of disgust is selectively impaired.
The study recruited large sample sizes for both groups, allowing for robust
comparisons between groups to be carried out.
Anderson et al. (2011) also used the Harmer et al. (2001) stimuli to investigate
whether there was a difference in ER between those who were currently depressed
and those who were in recovery. They reported that those with current depression
were impaired at recognising emotions compared to both controls and those who were
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in recovery (p<0.05 and p<0.01 respectively). Currently depressed participants were
unable to report whether an emotion was being expressed on the face or not. This
supports the idea that those with depression are unable to accurately discriminate
between emotions, and indicates that these deficits decline once recovery from
depression begins. Liu, Huang, Wang, Gong & Chan (2012) used a derivative of the
Ekman and Friesen stimuli (1976) using Asian faces in a Chinese cohort of depressed
individuals. They found support for the idea that depressed individuals show a
negative emotional bias, as these participants were quicker than controls at
recognising sadness and anger (p=0.014). This suggests that ER dysfunction in
depression is not unique to Western populations, and the authors suggest further
research to investigate the real-life impact these changes may be having.
The studies by Bediou et al. (2005) and Schaefer et al. (2010) used similar
stimuli and methods to those of the other studies, however reported no differences
between those with depression and controls in ER ability. The studies both had
medium sample sizes of 20 and 34 depressed participants, suggesting that the lack of
differences found may be due to other reasons, for example differences in levels of
depression or medication compared to the other studies reviewed. Overall, the
evidence for ER deficits in depression suggests that these do exist, mainly in
discrimination between emotions and having a tendency to label neutral expressions
as sad. However the results are mixed and it may be difficult to make comparisons
between studies due to the wide range of testing differences and participant
demographics found.
Discussion
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The current literature review aimed to synthesise the existing research into emotion
recognition (ER) deficits in mild cognitive impairment (MCI), a relatively new area of
research, and ER in individuals with depression. The importance of this research is
found when considering how vital emotion recognition is for social functioning.
Being able to detect emotion in someone’s face is essential to interpersonal
relationships; impairment in this ability could impact negatively on someone’s social
behaviour and psychological functioning (Brune & Brune-Cohrs, 2006).
Overall, the results from the MCI research suggest that there is impairment in
emotion recognition abilities, as the majority of studies reviewed found these
individuals were significantly impaired relative to controls. Only two of the ten
studies found that there was no difference between those with MCI and control
participants in ER ability (Bediou et al., 2009; Henry et al., 2009). For those that did
report differences, these deficits were above those found in normal ageing, suggesting
that in MCI, there is a more extensive pathology occurring that is impacting on these
abilities. There was also evidence for certain emotions being more affected than
others, specifically anger, fear and sadness. These deficits were found in the presence
of intact facial processing abilities, as highlighted by the use of control tasks, meaning
that they cannot be explained by individuals being unable to process faces in general.
The literature also suggests that ER is differentially affected across the MCI subtypes.
Those with amnestic MCI are more likely to demonstrate these deficits than the non-
amnestic subtype, and additionally those with multiple cognitive domains affected by
impairment are more likely than those with single domain impairment. The more
extensive pathology therefore relates to higher levels of impairment, which could add
support to the idea that multiple domain amnestic MCI is an intermediate phase
between normal ageing and dementia.

141
The depression research was also mixed; however the majority of studies
reviewed did suggest impairment in ER for those with major depression. This seemed
particularly related to being unable to both identify emotions and discriminate
between an emotional and a neutral face (Kohler et al., 2011). There is also evidence
for people with depression having difficulty recognising disgust from facial
expressions (Douglas & Porter, 2010) and having a negative bias, where they interpret
neutral facial expressions as sad (Bourke et al., 2010). However, again the results
need to be interpreted with caution, as there were a very wide variety of testing
methods, demographic factors and sample sizes in the studies reported. For example,
studies varied in the use of inpatient participants; some participants were taking anti-
depressant medication while others were not; the duration of the mental illness varied;
and age and education of participants varied. This has prevented research giving firm
conclusions as to whether recognition of specific emotions is more affected by
depression (Kohler et al., 2011) and leaves an area for future research.
There are a number of important factors involved when trying to interpret the
findings of the MCI studies. In the majority of studies, a general group of MCI or
aMCI participants were used, without being further subdivided depending on the
extent of their cognitive decline (i.e. single or multiple cognitive domains). This
makes it harder to interpret the research findings, as it is more difficult to identify the
associated brain pathology that might be underlying the deficits reported. It is
therefore necessary to interpret the findings of ER deficits with caution. Interestingly,
the studies that also used body language to identify emotions found mixed results
about whether those with MCI are impaired at using bodily information to detect
emotion. Henry et al. (2012) found no impairment of the MCI group, whereas
McCade, Savage, Guastella, Lewis et al. (2013) that those with multiple domain
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amnestic MCI participants were less able to use cues such as body language and hand
gestures to recognise emotions. Henry et al. (2012) did not divide their MCI group
into subtypes, which could account for this discrepancy; the participants in the
McCade study were impaired in multiple cognitive domains, suggesting they may
have experienced more brain pathology than those in the Henry et al. study. This
finding could suggest that as neurodegeneration progresses, the ER deficits also
progress to appear more like those found in dementia, where people have difficulty
using social cues to detect emotion as well as facial cues.
The studies reviewed suggest different factors that could be accounting for the
findings reported. Some studies suggested that the results could reflect the more
general cognitive decline found in MCI, shown by lower scores on memory tests such
as the Mini-Mental State Examination (MMSE). This could lead to difficulties
understanding the tasks or remembering the instructions sufficiently to take part.
However, some studies controlled for cognitive decline and found that the deficits
remained, suggesting that other factors must be accounting for this. Evidence from
neuroimaging studies has shown that the medial temporal lobe of those with MCI is
subject to neurodegeneration, and this pathology increases in those with multiple
cognitive domains affected (Whitwell, Petersen, Negash, Weigand, Kantarci, Ivnik et
al., 2007). Importantly, the study by Fujie et al. (2008) coupled their ER task with
neuroimaging. Their finding that those with aMCI have increased pathology to the
uncinate fasciculus compared to healthy ageing adults was important, as this increased
understanding of the role of this brain area in ER ability. As increased white matter
pathology to this area was related to decreased ER accuracy, the authors suggested
that this area may be directly associated with ER ability, or indirectly involved along
with pathology to the amygdala and hippocampal areas to which it connects.

143
Taken together, the studies reviewed suggest that both MCI and depression
influence someone’s ability to recognise facial expressions of emotions accurately.
Weiss et al.’s (2008) finding that depression did influence ER ability in those with
MCI was important, however analysis with the Sobel test (Preacher & Leonardelli,
2010) found that depression was not mediating the ER deficits found. This study was
one of the first to investigate this relationship and further research is needed to
confirm the factors that may impact on ER ability in MCI. There is also no evidence
as to whether the opposite is true, i.e. whether ER deficits act as a mediator between
MCI and depression, leading to increased difficulties with psychosocial functioning in
this group. The current review suggests that future research is needed in order to
assess the psychosocial impact of ER deficits in those with MCI. For example, how
does it impact on relationships, psychological illness and social behaviour? As noted
previously, since ER is so vital to social functioning, deficits in this area are likely to
impact negatively on this area, yet this remains under-investigated.
Another important area for future research would be to further investigate how
ER is affected in the different MCI subtypes. Since different subtypes of MCI suggest
development to different types of dementia (Petersen & Morris, 2005), it would be
important to understand ER in the different subtypes more, in order to understand the
different pathologies of these dementias at the earliest stages. For example, naMCI is
suggested to lead to more frontotemporal pathology compared to aMCI, and this type
of dementia is strongly associated with ER deficits. Although McCade, Savage,
Guastella, Hickie et al. (2013) and McCade, Savage, Guastella, Lewis et al. (2013)
found no ER deficit in those with naMCI, it is important that this is further
investigated, as there is not enough evidence to make a firm conclusion.

144
It would also be important to investigate how ER deficits relate to different
neuropsychological deficits. Although all the MCI studies carried out
neuropsychological testing, correlations of this with ER ability was not uniformly
reported. McCade, Savage, Guastella, Hickie et al. (2013) reported that working
memory was associated with ER ability, Spoletini et al. (2008) reported a relationship
between ER and logical memory and Teng et al. (2007) reported that poorer
performance on executive function measures predicted poorer performance on ER
tasks. Despite this, there is room for more extensive investigation into what
neuropsychological impairments may be related to ER deficits, to allow a more in-
depth understanding of how different cognitive abilities may be influencing ER.
Finally, in order to understand how ER deficits may progress from normal
ageing, to MCI, to dementia, longitudinal research should be carried out. This would
allow for more definitive understanding about how these deficits develop and
progress through the process of neurodegeneration. This would enable interventions
to be targeted at a much earlier stage of the process, allowing people to live without
the full impact of these deficits for longer. This in turn could allow for decreased carer
burden, through improved understanding of the difficulties involved, and
subsequently allow people to live independently for longer, improving quality of life
in these individuals and their carers.
Conclusion
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There is evidence to suggest that the ability to accurately recognise facial expressions
of emotion is compromised in people with mild cognitive impairment and depression.
Depression is one of the most common psychological difficulties experienced by
those with MCI (Apostolova & Cummings, 2008), yet little research has focused on
whether emotion recognition difficulties could be leading to this depression. Given
how imperative emotion recognition is to social functioning and successful social
relationships, it is possible that a decline in this ability could cause higher levels of
depression, due to difficulty with social functioning. In answer to the research
question posed by this review, the findings are still inconclusive as to how emotion
recognition and depression interact in those with MCI. As this area has not been the
focus of research previously, this review suggests this as an area for further study, in
order to help increase understanding of the real-life implications of decreased emotion
recognition skills in older adults.
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Clinical experience overview
1. Placement: Adult community mental health team.

151
Range of clinical experiences gained: I gained experience of providing psychological
therapy individually and in a group with adults with complex mental health
difficulties in a variety of settings. This placement included:
 Neuropsychology assessment, formulation and feedback
 CBT assessment, formulation and intervention for a range of difficulties.
 Co-facilitation of group interventions (for Bipolar Affective Disorder and
STEPPS programme for Borderline personality disorder).
 Understanding balancing and prioritising of work and a caseload.
 Regular meetings with psychology team across the borough.
 Service development and teaching work.
2. Placement: Learning disability community team
Range of clinical experiences gained: I had a very wide range of experiences working
with men and women of different cultural and social backgrounds, in different
locations (e.g. in the office, care homes, day centres). I gained experience in:
 Assessments for challenging behaviour, Autism Spectrum Disorders and
cognitive assessments
 Adapting mental health interventions
 Working with a variety of teams e.g. paid care staff, MDT members, nursing
3. Placement: Child and adolescent community mental health team
Range of clinical experiences gained: This placement afforded me a solid, broad
understanding of working with children and adolescents.

152
Specifically I was able to gain experience in:
 CBT assessment, formulation and interventions for mental health difficulties
and self-harm.
 Work within a Looked After Children service, working mainly with an
attachment perspective, allowing increased creativity and flexibility.
 Introduction to Interpersonal Psychotherapy interventions with young people.
 Observation and completion of initial CHOICE appointments.
4. Placement: Older people community mental health team & challenging
behaviour in-reach service
Range of clinical experiences gained: I gained a wide range of experience working
with older people with mental health difficulties, dementia and memory difficulties,
family members and paid care staff. This helped consolidate my experience in helping
people adjust to the specific difficulties that ageing can bring. Specifically, I gained
experience in:
 Challenging behaviour assessments and interventions. Formulation sessions in
care homes with care staff to increase understanding of psychological distress.
 Neuropsychological assessment, formulation and feedback.
 Individual therapy sessions for difficulties such as anxiety, hoarding and low
mood, mainly using a CBT model.
 Supervising a recovery support worker once a week, learning about
supervision models and techniques, and developing leadership skills.
5. Placement: Specialist neuro-rehabilitation & acute stroke ward
Range of clinical experiences gained: I worked across two sites, giving me the chance
to maximise my learning in neuropsychology and neurorehabilitation. The clinical

153
was broad and varied, as well as challenging working in a fast-paced hospital
environment.
Some specific elements of the work I completed were:
 Individual work with patients for mental health difficulties and cognitive
rehabilitation within the context of brain injury and stroke
 Neuropsychological assessment, formulation and feedback.
 Joint work with MDT (OT, physio, nursing, doctors) to provide consultation
and target specific psychological difficulties in rehabilitation sessions.
 Group co-facilitation (memory group for cognitive rehabilitation; adjustment
to brain injury and disability).
 Supervision of rehabilitation assistants once a week (peer supervision).
This placement was also helpful in building up leadership skills and confidence and I
was able to experience group supervision and formulation sessions, and attend regular
psychology CPD sessions.
Assessments year one

ASSESSMENT TITLE
154
WAIS-IV report Report of WAIS-IV data and practice administration
Practice Case Report Practice case report
Problem Based Learning – The relationship to change

Reflective Account
Major Research Project A review of emotion recognition in mild cognitive impairment

Literature Review and depression
Adult – Case Report 1 Assessment and cognitive behavioural therapy with a woman
presenting with chronic depressive symptoms
Adult – Case Report 2 Assessment and cognitive behavioural therapy with a man
presenting with paranoia and hearing voices
Major Research Project Emotion recognition deficits and depression in mild cognitive
Proposal impairment
Assessments year two
ASSESSMENT TITLE
Service Related Project Evaluation of a Bipolar Affective Disorder psychological

management group in a community mental health team
Professional Issues Essay Successfully promoting psychological services to men, working

class young people and cultural minorities present considerable
challenges to clinical psychology where the majority of
practitioners are white European females”. What challenges do
you anticipate there will be for you as a clinical psychologist in
attempting to reach out to these groups?
Problem Based Learning – Reflective account

Reflective Account
People with Learning An extended psychometric assessment of a woman with an
Disabilities Case Report Autism Spectrum Disorder
Personal and Professional PPLDG Process account

Learning Discussion
Groups – Process Account
155
Child and Family- Oral Working indirectly with a teenage girl presenting with low
Presentation of Clinical mood and self-harm behaviour
Activity
Assessments year three
ASSESSMENT TITLE
Major Research Project The psychological impact of having a family member diagnosed
Empirical Paper with mild cognitive impairment
Personal and Professional On becoming a clinical psychologist: A retrospective,

Learning – Final developmental, reflective account of the experience of training
Reflective Account
Older People Case Report An assessment, formulation and intervention with an older
woman with dementia, using the Newcastle model for behaviour
that challenges

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The psychological impact of having a family member diagnosed

with Mild Cognitive Impairment

Submitted for the Degree of

Background: The study aimed to investigate the perspective of family members of

Methods: Participants were recruited through opportunity sampling in a memory

structured interviews to gain a thorough understanding of their experiences. The

using inductive thematic analysis.

existing and anticipated changes to life as a result of MCI.

School of Psychology: PsychD Clinical Psychology

of the diagnostic process, coping and adjustment.

School of Psychology: PsychD Clinical Psychology

I would like to extend my gratitude to those who assisted me throughout my research

personal and professional development throughout the three years of training.

part and contributed so kindly to this research.

fun, distraction, generosity and encouragement during my training experience. I could

colleagues on Cohort 42, thank you for the journey.

School of Psychology: PsychD Clinical Psychology

Major Research Project Empirical Paper 6

Major Research Project Appendices 56

Major Research Project Proposal 104

Literature Review 118

Overview of training experience 157

Year one 160

Year two 160

Year three 161

MRP Empirical Paper

School of Psychology: PsychD Clinical Psychology

increases as cognitive decline progresses and their level of dependence increases

providing a wealth of knowledge about how family members adjust to becoming a

psychological distress (Mace & Rabins, 2011).

impairment process. Individuals with a diagnosis of mild cognitive impairment (MCI)

School of Psychology: PsychD Clinical Psychology

coping mechanisms and relationships.

Mild cognitive impairment

based on criteria devised by Petersen et al. (1999); it applies to individuals with a

should be viewed instead as the very early stages of dementia or symptoms of a

temporary mental health difficulty (see Werner & Korczyn, 2008).

There are currently various diagnostic pathways to receive an MCI diagnosis in

England. Usually, it involves the same processes as receiving a diagnosis of dementia,

with an initial GP consultation, a referral to a memory clinic and several assessments.

School of Psychology: PsychD Clinical Psychology

There are some benefits of receiving an MCI diagnosis, such as identifying

individuals who might go on to develop dementia and regularly monitoring their

of progression of MCI and how MCI is understood, there is a considerable amount of

while others may not identify it as a problem, resulting in different psychological

is almost no research about people’s experience of receiving a diagnosis of MCI

and their family.

Influences on stress for family caregivers

involved in close relationships, to a position where the caregiving is unequally

School of Psychology: PsychD Clinical Psychology

1995), and tolerance of uncertainty would be an extremely important factor to consider

uncertainty as unmanageable, they would be more likely to experience psychological

coping and adjustment would be affected.

It is pertinent to consider how people’s expectation of becoming a carer might

it impacts differentially on different types of relationships and can lead to changes in

to when caring is shared between multiple family members.

School of Psychology: PsychD Clinical Psychology

people have started to view themselves as traditional “carers”. Being a concerned

necessary information and support. It would be worthwhile understanding how

this ambiguity impacts on their ability to access support for themselves.

Literature on the family member perspective of mild cognitive impairment

The existing qualitative research on the perspective of families of PwMCI is mixed in

were themes around role and communication changes negatively impacting