Article

Nursing Ethics
18(5) 662–671
Sustaining citizenship: People ª The Author(s) 2011
Reprints and permission:
sagepub.co.uk/journalsPermissions.nav
with dementia and the 10.1177/0969733011408049
nej.sagepub.com
phenomenon of social death

Tula Brannelly
Massey University, New Zealand

Abstract
Social death is apparent when people are considered unworthy of social participation and deemed to be
dead when they are alive. Some marginalized groups are more susceptible to this treatment than others,
and one such group is people with dementia. Studies into discrimination towards older people are well
documented and serve as a source of motivation of older people’s social movements worldwide.
Concurrently, theories of ageing and care have been forthcoming in a bid to improve the quality of
responses to older people in times of need. Included in this theorizing has been the analysis of values
and approaches that paid carers convey to citizens who require their help. In this article, the values and
approaches of social workers and mental health nurses bring to people with dementia are considered
within the context of social life and social death. It is based on a small study that undertook to critically
examine how participation of people with dementia was facilitated. A thanatological lens was used to
interpret inclusive and exclusive practices which potentially create opportunity for participation or
reinforce the loss of citizenship for older people with dementia.

Keywords
citizenship, dementia, participation, social death, thanatology

Introduction
People who are very old, although socially alive, may be treated by others as if they are socially dead.1 Anal-
ysis of the responses of ‘others’ to older people treated as socially dead include a number of debates around
citizenship, stigma and dehumanization. The main body of this article picks up on Sweeting and Gilhooly’s
research about social death1 which examined family carers’ approaches to people with dementia who were
either believed to be socially alive or dead. In the first section, social life and social death are adapted to a
professional care (and distanced) context and are presented as social regard and disregard in an attempt to
examine the attitudes and actions of nurses and social workers toward people with dementia. The second
section outlines the methodology used for researching the concept of social regard and disregard. The third
section discusses the potential of a social regard framing of care for people with dementia to better respect
and honour the citizenship of people with dementia by understanding practitioners’ motivations for enabling
or disabling participation. If these nurses and social workers believed that people with dementia are socially
dead and therefore disregard them, what impact does this have on the processes and outcomes of decisions

Corresponding author: Tula Brannelly, School of Health and Social Services, Massey University, Wellington Campus, P O Box 756,
Wellington, 6040, New Zealand
Email: P.M.Brannelly@Massey.ac.nz
Brannelly 663

that are made regarding changes in care needs? Conversely, if nurses and social workers believe that people
are socially alive, what difference does this make to care? Care decisions impact on fundamental citizenship
issues, in terms of participation in the processes of making decisions, as well as the outcomes of care
decisions, such as where a person is to live. The conceptual relationship between exclusion and dehumaniza-
tion is fundamental to understanding how professional care practice could be influenced by a paradigmatic
shift in the theoretical consideration of citizenship as it applies to older people with dementia.
In 2003 it was estimated that there were 750,000 people diagnosed with dementia in the UK, of whom
18,500 were under 65 years old, and numbers of people with dementia are set to rise substantially world-
wide.2 People with dementia are often brought into contact with professional carers through other people’s
concerns about increasing functional need, or familial carers who are no longer able to cope. These citizens
are often at more advanced stages of the disease when they come into contact with specialist services, and
often at a time of crisis when care arrangements are no longer adequate and additional services are required.
These circumstances require that practitioners are sensitive to the needs of carers and people with dementia in
what are often difficult ethical situations.

Citizenship, stigma and dehumanization

Citizenship is both a status and a practice.3 As a status, citizens have rights as bestowed upon them by the
State, and these include the right to access health and social services. In terms of practice, being a citizen
infers being part of a community,4 and therefore to have responsibilities and obligations to that community.
In order to perform and fulfil obligations, a citizen requires the ability to be socially active and connected to
other citizens. Conventional understandings of citizenship focus on the self-governing individual who has
autonomy.4 Debates in the 1990s concerning citizenship of people with dementia focused their attention
on advocacy. More recently the focus has shifted to participation and inclusion in care,5–8 research,9 and
governance.10,11 Citizenship implies the ability to be socially active and connected, as a citizen, to others and
as a concept has been tied to competency as an adult.12
Older people with dementia have been positioned as passive actors, due to the disabling effects of demen-
tia on cognition and communication,10 thereby denying the possibility of active citizenship. Citizenship as a
universal state of perpetuated adulthood or agelessness, is challenged,13 as is the status of citizens who are
dependent persons,13 and citizenship is seen as the premise for a good death.14,15 The concept of the citizen
has been developed as ‘one who cohabits with others’12 rather than the citizen who is self-governing. This
challenge to the conventional notion of citizenship enables inclusion of people who may be more usually
viewed as lacking citizenship.
Part of being an active citizen is how people relate socially to each other, but people with dementia con-
tinue to be stigmatized and discriminated against.16,17 Research, which has examined the social worlds of
people with dementia, has noted the poverty of interactions between people with dementia and people who
care for them.18 Despite people with dementia continuing to be actively social, communication is sometimes
not reciprocated, or simply misinterpreted.19
The declines associated with advanced dementia have an accompanying perceived dehumanization of the
person, and this perception of dehumanization has been challenged for many years.20–23 Many hypotheses
have been put forward to explain why fitter, younger or more healthy people dehumanize those who are inca-
pacitated, older or unwell. One explanation is that dehumanization is the result of the fitter, younger and more
healthy person placing a protective distance between themselves and the incapacitated, older or unwell per-
son. The protective function of the distance is that the fitter, younger and more healthy person is unwilling to
relate to themselves in such a position of decrepitude or empathize with that position. Hence, the distance
results in positioning the incapacitated, older or unwell person as less than human, which leads to an inability
to engage with the ‘other’. Another explanation is the repeated experience of loss that paid carers experience
664 Nursing Ethics 18(5)

when working with older people with dementia where the emotionality of their work requires a distance
which protects against enduring grief and sadness, and possibly burnout. There is also evidence that people
who work with older people with dementia avoid discriminating, stigmatizing or dehumanizing practices,
and engage and sustain the humanness and citizenship of people with dementia in ways that ensure their
inclusion in social life.5,6
Professional carers are positioned as active citizens, who have a professional responsibility to involve
care-receivers in care decisions whenever possible. Therefore, it could be expected that exclusionary prac-
tices occur when the abilities of a person with dementia are diminished to such a degree that participation is
untenable. When people with dementia are no longer able to consider and communicate need, practitioners
are required to find alternative ways of including the person’s preferences or to assess health status and need.
Understanding the biography of the person, and the involvement of family and other carers is a necessary
basis for the exploration of options for care. Despite advanced dementia, the responsibility rests with practi-
tioners to ensure inclusion.
Practitioner involvement and response is premised on the often fluctuating but always deteriorating reality
of the effects of the disease process, but is also influenced by existing discourses of discrimination and exclu-
sion, understandings of citizenship and belonging, and ‘everyday’ responses to the idea of personhood. In
addition, the practitioner-client relationship is set within a context of ever changing dependency. If exclusion
is related to dehumanizing phenomena,22 then it is possible to consider that practitioners are influenced by
beliefs about the social life and social death of older people with dementia and that it is these underpinning
beliefs that influence the willingness of practitioners to involve or exclude people from care.

Social death of people with dementia

Social death was recognized as an impact of expected death in Glaser and Strauss’ 1966 seminal work about
medical disclosure, where it was discussed by clinicians whether or not to disclose the terminal status of the
patient to the patient.24 People with lengthy fatal illness, very old people, and people with a loss of person-
hood were identified by Sweeting and Gilhooly as possessing the characteristics necessary to be treated as
socially dead.1 Sweeting and Gilhooly proposed two sets of four criteria to code observations and interviews
with familial carers of people with dementia to examine attitudes, beliefs and actions related to social death.
The first set of criteria focused on values and entailed: 1) the carer seeing the sufferer’s life as a nuisance, and
the carer looking forward to the death of the person with dementia; 2) the sufferer’s life being hardly worth-
while, with the carer thinking ahead to the person’s death; 3) the carer having some difficulty seeing life as
worthwhile but rarely/never thinking ahead to the death; or 4) that the sufferer’s life is entirely worthwhile at
present1 (pp 100 - 101). The second set of criteria focussed on the carer’s response to the person with demen-
tia: 1) the sufferer is ignored if present and the carer reports no point acknowledging their presence; 2) the
carer pays only slight attention socially to sufferer; 3) the carer attends to sufferer as required; and 4) the carer
attempts to include sufferer as normal, acts in accordance with the perceived wishes of sufferer (p.101–2).1
As a brief synopsis of the findings, the carers adopted one of three stances in relation to their beliefs about
whether their charges were socially alive or dead. The first stance was that the person with dementia was
socially alive and the carers’ actions reflected this. The second stance was that the person was socially dead
but that the carers’ actions either reflected this belief and the person was treated as though they were socially
dead, or the third stance, that the carer did not act on this belief and continued to treat the person as though
they were socially alive. According to the stance that the carers adopted, some people with dementia were not
thought of as sentient and alive, and some were fully socially included.
More recently, less has been written about social death of older people and the concept has been used to
describe the exclusion of people with HIV/AIDS, younger people living with terminal illness, the preference
to die at home,25 and to describe the positioning of groups of people who faced genocide based on personal
Brannelly 665

Table 1. Proposed typology of social regard

Social regard: Practitioner attempts to include person with dementia as normal, acts in accordance with the
perceived preferences of the person
Decreased social Practitioner attends to person with dementia as required
regard:
Little social regard: Practitioner pays only slight attention socially to person with dementia
Social disregard: Person with dementia ignored if present/practitioner reports no point acknowledging

beliefs or social group identity.25 These more recent definitions of social death further reinforce its usefulness
as a concept in the context of dementia. Card uses Patterson’s (1982) terminology (originally used to discuss
slavery) in relation to genocide and social death and points out that the ‘harm of social death is not necessarily
less extreme than that of physical death’ (p.73),26 and that being treated as socially dead robs the self of the
dignity of a meaningful and bearable death.
Practitioners are differently positioned to familial carers who were the focus of Sweeting and Gilhooly’s
study. For the purposes of the present study, therefore, there was a need to adapt the social life and social
death criteria for an analysis of practice. It was thought unlikely that practitioners would openly discuss look-
ing forward to the death of a person with dementia, or to discuss in their professional context whether a per-
son has a worthwhile life, consistent with the expectations of codes of ethical practice. This was for various
reasons, not least that practitioners do not have such a long-standing relationship with people with dementia
that they are likely to experience such emotive reactions to them. It is acknowledged that renaming social
death as disregard potentially problematically validates the professional distance which contributes to or
informs conditions in which dehumanization may thrive. However, the different positioning of paid carers
as social actors necessitated an alternative version. In order to reframe Sweeting and Gilhooly’s argument,
the present research developed a version for practitioners which was renamed social regard and disregard. In
this typology, a continuum from social regard to social disregard was adopted (see Table 1).
The research design section below describes how these definitions were applied to practice in the analysis
of observations between the social work and mental health nurse practitioners with people with dementia and
their carers.

Research design
This research used both a social constructionist and critical realist approach, which aimed to examine the
constructed facilitation of participation in care by community mental health nurses and social workers for
people with dementia and their families. The social regard and disregard analysis was used as well as an
ethics of care analysis6 to examine care practices. The aim of the research was to consider citizenship and
care for people with dementia by examining what participation was facilitated by nurses and social workers
for people with dementia and their families, and interrogating practice decisions relating to care changes in
the interviews with practitioners. Through examining the ways in which nurses or social workers participated
with people with dementia, the research aimed to theorize a relationship between citizenship and care
practices.
A qualitative approach was taken, with observation of 15 practitioners, eight community psychiatric
nurses and seven social workers in their practice with 50 people with dementia and their families in a UK
city. The age range of the people with dementia was 44 years old to 101 years old, both men and women.
One man and one woman of working age participated (56 years old and 44 years old respectively). The mean
age of the participants with dementia was 78.5 years for men and 80 years for women. Ethical clearance was
granted by both a local health research ethics committee, and a social services committee. The health
666 Nursing Ethics 18(5)

research committee rejected the original research design which included interviews with the people with
dementia in favour of observations. It was rejected as it was thought that participation in interview was
an unreasonable request of the people with dementia as it may cause duress. The observations involved peo-
ple with dementia, the nurse or social worker and the family was sometimes but not always present. There
were a number of people with dementia who could have participated in interviews, and this opportunity was
missed in terms of gaining the voices of people with dementia.
Collecting informed consent from people with dementia is a well documented research difficulty.9 In this
research, written consent to participate was collected wherever possible. There were times when the practi-
tioners and family members were surprised at the ability of the person with dementia to understand and con-
sent to the research process. Where the person was unable to provide written consent, verbal consent was
requested, as well as agreement from the family members where possible. Where consent was questionable,
the researcher decided to withdraw if the person became distressed, and to retry or visit another day with the
practitioner. This was not required in any of the observations.
Formalized measures of capacity or function were avoided as either an indicator for participation in the
research or as a descriptor of ability or competence. It was unlikely that social workers and psychiatric nurses
would use any set of measures consistently across the potential sample of participants. The researcher also
did not want to decide participation based on a snapshot assessment of capacity or function. Practitioners
were asked to include people with dementia whose care needs were changing, possibly with a view to place-
ment in residential care. It was expected that this group of people with dementia would be at an advanced
stage, and so they were. The abilities of the people with dementia who participated in this study were assessed
according to the view of the practitioner and what was observed, such as level of expressive communication,
or receptive communication, verbal and non-verbal clues. The researcher took cues from the person with
dementia about whether they were able to contribute to decisions regarding their care, either by direct invol-
vement such as in conversation, by direct involvement such as a non-verbal reaction to a situation or by indi-
rect involvement in that the practitioner knew the preferred outcome of the person with dementia via family
or friends and an understanding of the biography of that person.
The people with dementia and their families were recruited through the practitioners, who were requested
to identify people whose care needs were changing, in order to establish how decisions were made to progress
care. Field notes were generated and shared with the practitioners, which formed the basis of interviews to
further interrogate practice. Analysis included observation of how the person with dementia was included or
excluded from decisions. The people with dementia were resident at home, in general hospital, or residential
or nursing home care. Observations occurred at the place of residence, or at a day centre. Of particular inter-
est was how people with dementia were included in decisions about where they lived, especially when a
move from home into residential care was proposed. The analysis presented here relates to how the practi-
tioners included or excluded people with dementia in their observed practice, and the justifications that prac-
titioners provided for how they worked with people with dementia and their families.

Results
Of the 10 people with dementia who moved into residential or nursing home care during the research period,
there were a number who moved unwillingly or who were initially willing but changed their decision after
some time. In particular, two people were not provided with the opportunity to participate in their care, even
though they were competent to participate. The researcher expected that practitioners would attempt to
include people with dementia in their care decisions whenever possible, but to see less inclusion when the
person with dementia was at a more advanced stage with less apparent ability to participate in decision mak-
ing, consistent with the dominant health and social discourses of empowerment and inclusion. What was
observed, however, was that of the 15 practitioners, two made no attempt to include the person with
Brannelly 667

dementia, nine of the practitioners made every attempt to include the person with dementia, and the remain-
ing four practitioners judged the level of inclusion on a case by case basis based on their perception of the
person’s ability to participate. These four practitioners offered explanations in the interviews for the inclu-
sion or exclusion of people with dementia based on a number of factors such as the person’s preference, pre-
vious experiences of distress at, for example, multi disciplinary team meetings, and the person asking for
advocacy by the practitioner or another nominated person.
The practitioners who included people with dementia often attempted to include the person but did not
want to place the person under any kind of duress by directly asking questions and awaiting answers. Inclu-
sion was facilitated in other ways such as knowing the preferences of the person through previous interviews
with them and their family, or by asking family members about what those preferences might be, building a
biographical understanding of the person and being informed by that. The two exclusionary practitioners did
not state a belief that the person was unable to participate, or was socially dead, but that the focus of decision
making did not acknowledge the preferences, current or previous, of the person with dementia; that the per-
son with dementia would have nothing of value to contribute. Decisions were made on criteria other than the
preferences of the family and the person with dementia as described in more detail below.

Social regard
Where the practitioner attempted to include the person with dementia and acted in accordance with that per-
son’s preferences they demonstrated, according to the research typology, social regard. Thirty-nine of the 50
people with dementia were ‘socially regarded’ in this way. Eleven of the practitioners overall practiced this
regard, nine consistently and two on an ‘as needed’ basis. The researcher’s expectation that social regard
would diminish dependent on the severity of dementia was not found among the majority of the practitioners
in this study. Rather, what was evident was that the approach the practitioners took had significant implica-
tions for the outcomes that were achieved through care.
When people with dementia were socially regarded, there was inclusion in the discussion of the care pre-
ferences which included both the person with dementia and their familial carers, when possible. An example
of this was that where regard was evident there was the opportunity to refuse services. In the case of Dan (all
names are pseudonyms), for example, a social worker introduced a service which included a day placement,
and also had a respite service. Dan was keen to stay at home, but agreed to go along to the service after an
explanation from the social worker that his wife needed a break from her care role and time for herself. The
social worker attended the centre with Dan, and then met with the couple at the end of each day to discuss the
benefits and difficulties of attending the service. Although reluctant, Dan agreed to attend the service for two
days per week as long as he was able to bring his own things to do during the day, as he might do at home, and
that after some time he would consider staying over for a night or two to give his wife a break. Difficulty with
remembering the reasons for the service provision in the first place was mitigated by the social worker pro-
viding some notes and continued discussions over a period of weeks, until the service was fully accepted by
the couple. Thus, regard ensured a mediated, communicative strategy of working through the issue with both
of the couple, giving the process time to be accepted and providing relevant but not patronizing advice and
support.
In another example, Lottie, a woman with dementia who lived alone, was introduced to a residential home
for respite care, did not like it at all and so the plan was abandoned and she returned home. Despite the person
with dementia finding it difficult to think through the consequences of decisions, this was accommodated by
practitioners who provided flexibility in planning service provision, and the experiential understanding of the
person with dementia was taken into account in deciding how to progress.
When the person with dementia was regarded, practitioners maintained the focus of provision with the
preferences of the person with dementia, the needs of the carer and the needs of the practitioner in providing
668 Nursing Ethics 18(5)

help in situations where it was required. The practitioners showed skill and sensitivity in working in a way
which was paced for the person with dementia, showed detailed knowledge of the needs of all involved,
aimed to meet those needs and were aware of the need to continually adapt and change plans to enable care
that was acceptable, and was therefore successful.

Social disregard
Where the practitioner did not attempt to include the person with dementia or act in accordance with that
person’s preferences, they demonstrated, according to the research typology, less social regard or social dis-
regard. Social disregard was apparent when the person with dementia was excluded by practitioners. Two of
the practitioners, one nurse and one social worker, consistently approached people with dementia in this way
and demonstrated less social regard or social disregard. The two practitioners worked with six of the 50 peo-
ple with dementia. Rather than the paced and sensitive work that was demonstrated with regard for people
with dementia, the perspectives of people with dementia were disregarded. For one woman, Marsha, the
practitioner helped her out to the garden as he discussed with her husband about how he was coping; she
banged on the window to be let back into the house but was ignored. Marsha’s husband had started to look
around for residential accommodation, but he would have preferred to continue caring for Marsha at home
had he been given help for this to continue. The practitioner conceded that residential home placement was in
Marsha and her husband’s best interests and inevitable, although there were alternative arrangements that
could be made to help him care at home.
The same practitioner saw the distress caused by respite care to an older man, Patrick, whose wife wanted
to stop his respite care placement as her husband was so distressed when he returned home. The response
from the practitioner was that Patrick did not know what was happening and the distress would diminish once
he forgot about the experience. If that did not happen, it was recommended that the best course of action
would be immediate permanent placement in care, or as a short-term solution for Patrick’s wife to call the
police if he became violent towards her.
A similar situation occurred for an older man, Darkus, whose social worker recommended permanent pla-
cement in residential care. Darkus was cared for by his daughter, who received no assistance to fulfil her
caring role which she wanted to continue. The social worker told of a future where Darkus would be a risk
to the children in the house and that permanent placement was inevitable. Darkus’ daughter was surprised at
the outcome of the meeting, but the arrangements were made and her father moved to a residential placement.
In part this was because she did not know about alternatives available to help her care at home for her father
and they were not offered to her.
The disregard of the person in these circumstances was validated by the practitioners in various ways
which included: the perception of the overwhelming burden of caring for an older person with dementia
on all three carers, husband, wife and daughter; the pathologization of distress as a disease process rather
than an emotional reaction to a situation; and the avoidance of potential future risks as a reason for residential
placement rather than incremental care at home. Overwhelmingly there was a lack of attention to the needs of
the carers or the people with dementia.

Discussion
Dehumanization, stigma and citizenship
Kitwood23 recognized that there was a lack of recognition of the person with dementia in institutional care,
which prompted him to promote personhood as a theory and practice for engagement. Although the number
of participants in this study is small, it is significant that despite people with dementia having some ability to
Brannelly 669

participate in the decisions regarding their care, their opinions and preferences were not a consideration of
some of the practitioners, consistent with Kitwood’s malignant social psychology.23 It is also relevant that
practitioners did not take responsibility for including the preferences of people with dementia, or the needs of
their families.
This lack of engagement is rarely challenged. Author and playwright Alan Bennett, reflected on the death
of his Aunty Kathleen, who had dementia and died in woods by a hospital where she was a patient.27 She was
eventually found by Bennett a week after she disappeared (p.94):

Aunty Kathleen’s life was at its lowest point of social valuation. She was seventy-three. She was senile. She was
demented, and she was of no class or economic importance. When she was found concern centred not on her fate
but on how it reflected on the staff of the hospital and the efficiency of the police force. Even in death she was of
marginal importance as a person.

Practitioners are influenced by societal and personal beliefs and multiple divergent examinations of how
these beliefs influence practice enable the multiple interpretations required to satisfactorily challenge poor
care outcomes.
The lack of engagement with people with dementia has been a longstanding question. Stigma associated
with dementia continues to influence behaviours toward people with dementia. Here, the emotional reactions
of people with dementia as an indication of acceptability of care were ignored, and explained in terms of their
illness. The two practitioners who disregarded people with dementia, stigmatized them based on their diag-
nosis as they failed to respond to their needs.
Citizenship is defined by Lanoix12 as a person who cohabits with others, which reflects the emphasis on
the enhancement and sustenance of citizenship through care and the status of all citizens as interdependent in
global need of care, consistent with an ethics of care.28 The question of how to maintain and sustain citizen-
ship for people with dementia is fundamental to ensuring that voice, opinions and preferences are part of
decisions about care. It is possible that resistance to the facilitation of citizenship is apparent where practi-
tioners deny the sentience of older people with dementia.
The citizenship status of people with dementia is questioned in various ways including experiences of the
disabilities associated with later stages of dementia. Where people are unable to present themselves and their
interests, citizenship relies on the biography or the person’s story or narrative29 and the facilitation of citizen-
ship relies on caregivers knowing that story and making good choices with care.28 Coping with change and
adaptation at times of increasing dependency requires an emergent social identity, and people with dementia
could be perceived thus. Bouchard Ryan et al.30 recognized the impact that poor social interactions have on
people with dementia and used narratives to reconstruct social identities which enable improved social rela-
tionships. Clare suggests that people with severe dementia are capable of demonstrating ‘thoughtful consid-
eration of an aspect of their situation and its implications’ (p.28) and that where people with dementia were in
‘sensitive surroundings’, the ability to express themselves improved (p.30).31

Social regard, social life and social death

If practitioners are unable to see a person with dementia as socially alive and a social actor, then personhood
or citizenship cannot be facilitated. But where practitioners do see people with dementia as socially alive,
citizenship can be facilitated well. It is significant that the majority of practitioners sought to engage people
with dementia in the good care choices that they were making, especially as decisions related to fundamental
aspects of everyday living. If a person with dementia was unable to contribute directly to the conversation,
then friends and relatives were asked what the person would want if they were able to voice an opinion. This
was reliant on knowing the biography of the person. Reactions to decisions, verbal and non-verbal, were
670 Nursing Ethics 18(5)

interpreted as indicators of the suitability of care and care was reviewed as necessary. Good care choices were
consistent with the preferences and choices of people with dementia and their families, even when placement
in a nursing or residential home was the outcome.

Conclusion
Representations of people with dementia have changed,32 better informed by research which examines the
expressions and experiences of living and dying with advanced dementia, and eventually this will impact on
the regard that practitioners have for people with dementia. Perhaps this small study signifies an aspect of
challenge that is required for people to recognize the importance of facilitation of the person with dementia
as a way of upholding the humanity and citizenship of the person in the face of adversity. Each care inter-
action has the potential for transformative citizenship or for disempowerment. Examining the phenomenon
of social death is a relevant proposition for understanding responses to older people with dementia and sus-
taining citizenship.

Acknowledgements
My thanks to the families, people with dementia and practitioners who participated in the research, to Robin
Peace for comments on an earlier draft of this article and to the anonymous reviewers for helpful feedback.

Conflict of interest statement

The authors declare that there is no conflict of interest.

References
1. Sweeting H and Gilhooly M. Dementia and the phenomenon of social death. Sociology of Health and Illness 1997;
19: 93–117.
2. Alzheimer’s Society. Dementia UK. London: Alzheimer’s Society, 2007.
3. Lister R. Citizenship: feminist perspectives. Basingstoke: Macmillan, 1997.
4. Lewis G. Citizenship. In: Hughes G. (ed.). Imagining welfare futures. London: Routledge/Open University Press,
1998, p.103–50.
5. Barnes M. Caring and social justice. Basingstoke: Routledge, 2006.
6. Brannelly T. Negotiating ethics in dementia care: an analysis of an ethics of care in practice. Dementia Interna-
tional Journal of Research and Practice 2006; 5: 2.
7. Barnes M and Brannelly T. Achieving care and social justice for people with dementia. Nursing Ethics 2008; 15(3):
384–95.
8. Gilleard C and Higgs P. Ageing without agency: theorizing the fourth age. Aging and Mental Health 2010; 14(2):
121–8.
9. Wilkinson H (ed.). The perspectives of people with dementia research methods and motivations. London: Jessica
Kingsley, 2002.
10. Bartlett R and O’Connor D. From personhood to citizenship: broadening the lens for dementia practice and
research. Journal of Aging Studies 2007; 21: 107–18.
11. Innes A. Dementia studies – a social science perspective. London: SAGE, 2009.
12. Lanoix M. The citizen in question. Hypatia 2007; 22(4): 113–29.
13. Kittay EF. From welfare to a public ethic of care. In: Hirshman N and Liebert U (eds). Women and welfare. New
Brunswick, NJ: Rutgers University Press, 2001.
14. Lloyd L. Mortality and morality: ageing and the ethics of care. Ageing and Society 2004; 24: 235–56.
15. Kellehear A. Dementia and dying: the need for a systematic policy approach. Critical Social Policy 2009; 29(1):
146–57.
Brannelly 671

16. Milne A. The ‘d’ word: reflections on the relationship between stigma, discrimination and dementia. Journal of
Mental Health 2010; 19(3): 227–33.
17. Butler RN. Age-ism, another form of bigotry. The Gerontologist 1969; 9: 243–6.
18. Kelly F. Recognising and supporting self in dementia: a new way to facilitate a person-centred approach to
dementia care. Ageing and Society 2010; 30: 103–24.
19. Killick J and Allan K. Communication and the care of people with dementia. Buckinghamshire: Open University
Press, 2001.
20. Sabat S. Excess disability and malignant social psychology: a case study of Alzheimer’s disease. Journal of
Community and Applied Social Psychology 1994; 4: 157–66.
21. Sabat S and Harre R. The construction and deconstruction of self in Alzheimer’s Disease. Ageing and Society 1992;
12: 443–61.
22. Sabat S. The experience of Alzheimer’s Disease: life through a tangled veil. Oxford: Blackwell, 2001.
23. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press, 1997.
24. Glaser BG and Strauss AL. Awareness of dying. London: Weidenfeld and Nicholson, 1966.
25. Young E, Bury M and Elston MA. ‘Live and/or let die’: modes of social dying among women and their friends.
Mortality 1999; 4(3): 269–89.
26. Card C. Genocide and social death. Hypatia 2003; 18(1): 63–79.
27. Bennett A. Untold stories. London: Faber and Faber, 2005.
28. Tronto JC. Moral boundaries – a political argument for an ethic of care. London: Routledge, 1998.
29. Baldwin C and Bradford Dementia Group. Narrative (,) citizenship and dementia, the personal and the political.
Journal of Aging Studies 2007; 22(3): 222–8.
30. Bouchard Ryan E, Bannister KA and Anas AP. The dementia narrative: writing to reclaim social identity. Journal
of Aging Studies 2009; 23: 145–57.
31. Clare L. Awareness in people with severe dementia: review and integration. Aging & Mental Health 2010; 14(1):
20–32.
32. Gilmour J and Brannelly T. Representations of people with dementia. Subaltern, person, citizen. Nursing Inquiry
2010; 17(3): 240–7.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.