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Received: 11 April 2019    Revised: 13 October 2019    Accepted: 30 October 2019
DOI: 10.1111/opn.12288
ORIGINAL ARTICLE
Co-designing technology with people with dementia and their
carers: Exploring user perspectives when co-creating a mobile
health application
Siobhan O’Connor BSc CIMA CBA, BSc RN FHEA
School of Health in Social Science, The
University of Edinburgh, Edinburgh, UK
Correspondence
Siobhan O’Connor, School of Health in Social
Science, The University of Edinburgh,
Doorway 6 Old Medical Quad, Teviot Place,
Edinburgh EH8 9AG, UK.
Email: siobhan.oconnor@ed.ac.uk
Funding information
The author gratefully acknowledges funding
from the Burdett Trust for Nursing who
supported this research study.
Int J Older People Nurs. 2019;00:e12288. wileyonlinelibrary.com/journal/opn |
https://doi.org/10.1111/opn.12288
Abstract
Aims: To explore the perspectives of those involved in co-designing a mobile applica-
tion with people with dementia and their carers.
Background: People with dementia suffer physical and psychological problems as
their illness progresses and require a range of health and social care services to meet
their needs. Mobile applications are being developed to support individuals to man-
age long-term conditions, but patients and carers are not always involved in designing
this technology, which can lead to poor quality health apps. A digital initiative was
launched to involve people with dementia and their carers in creating a mobile app
that would support communication and enable them to share memories together.
Design: An exploratory, descriptive approach was used.
Methods: In-depth interviews with people with dementia, their carers, and others in-
volved in co-creating a mobile health application were conducted. Data analysis was
undertaken using the framework approach.
Results: The views of people with dementia, their carers, and project staff were simi-
lar regarding the complexity of the co-design process, and the value the mobile app
had for people with dementia and their families. Being involved in co-production
seemed to have numerous benefits for people with dementia and their carers as they
gained new knowledge and skills, friendships, and a sense of achievement in creating
a unique app that would benefit many people. The app also appeared useful in stimu-
lating memory and cognitive function, aiding communication, and providing a sense
of normalcy for people living with dementia and their carers.
Conclusion: Mobile health applications can facilitate interaction between peo-
ple with dementia and their carer network that could improve their quality of life.
Further research on which co-design process is best suited to people with dementia
and whether technology created via this participatory method is more effective or
not in improving health outcomes is required.
© 2019 John Wiley & Sons Ltd     1 of 10
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Implications for practice: Nurses should have knowledge of and education about
technology and how it can promote health and wellbeing of persons with demen-
tia. Nurses who care for people with dementia and their families should support
them in taking part in or leading the design of technologies that meet their needs.
Participatory design methods should be taught in nursing education so the profession
can provide guidance to patients and their families on co-creating health products
and services

KEYWORDS

co-creation, co-design, co-production, dementia, health app, mobile application, participatory

design

1 |  BAC KG RO U N D
Dementia is a term used to describe a number of conditions that
cause damage to brain tissue, with Alzheimer's disease being the
most common, which can negatively affect a person's memory,
cognitive ability, communication, mood and behaviour (Alzheimer’s
Association, 2017). It is now an important public health priority as
people are living longer and older adults, in particular, are more
at risk of developing this chronic, debilitating neurological syn-
drome. Worryingly, the World Health Organization highlights that
dementia is now the seventh leading cause of death worldwide
and predicts that the number of people who suffer from dementia,
approximately 50 million, will triple by 2050 (WHO, 2018, 2012).
The quality of life for these individuals is severely affected, as they
lose the ability to engage in the normal activities of daily living and
become socially isolated as their behaviour and communication
skills deteriorate (Algar, Woods, & Windle, 2016). Those who care
for a person with dementia can also face a tremendous burden and
figures suggest that more than 15 million people provide unpaid
care for people with dementia in the United States (Alzheimer’s
Association, 2017). These carers can experience high levels of
stress due to the physical demands of caring, grief over their loved
ones deteriorating illness and financial, logistical and other pres-
sures (Farina et al., 2017). This can contribute to increased risk
of morbidity and disorders such as anxiety and depression among
carers (Alzheimer’s Association, 2017; Watson, Tatangelo, &
McCabe, 2018).
Dementia also impacts on the delivery and cost of primary, sec-
ondary and tertiary health services, especially in community settings
where the majority of people with the illness are cared for. Current
estimates put the cost of dementia at $818 billion in terms of its
impact internationally, which encompasses direct medical costs, so-
cial care costs, that include home, residential and nursing home care,
and the price of informal care and this is predicted to rise to $1 tril-
lion by 2030 (Alzheimer’s Disease International, 2015). Similarly, in
England, dementia is estimated to cost just over £24 billion in 2015
(Wittenberg et al., 2019), with this figure set to rise in line with de-
mographic changes. In response, the UK Department of Health sets
What does this research add to existing knowledge
in gerontology?
• This research adds knowledge about how a mobile
health application can benefit the health and wellbeing
of people with dementia.
• The findings revealed that carers also valued the digital
application as it supported communication and provided
a sense of normality when supporting a person with de-
mentia every day.
What are the implications of this new knowledge
for nursing care with older people?
• The results can help to improve support for people with
dementia and their carers by demonstrating some of
their needs can be met through co-creating technology.
• Nurses who support people with dementia and their
families can consider and suggest mobile health applica-
tions as one potential digital solution that is available to
them.
How could the findings be used to influence policy
or practice or research or education?
• This study promotes an understanding for decision-
makers as well as service organisations of how people
with dementia can be involved in creating new digital
health products and services.
• Further research should explore which co-design pro-
cess is best suited to people with dementia and if tech-
nology created via this method is more effective or not
in improving outcomes.
out a national strategy to address the needs of people with dementia
and their carers and ensure health and social care systems are ade-
quately prepared (Department of Health, 2009). One of its key aims
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was to develop a range of services that meet the needs of people

with dementia and their family over time as the illness progresses. A
systematic review commissioned by the National Institute of Clinical
Excellence identified a number of non-pharmacological interven-
tions to support individuals with all types and severities of dementia.
These included multi-sensory stimulation and the therapeutic use of
music, as there is some evidence of its clinical effectiveness (Cikalo
et al., 2017).
Mobile applications (apps) for monitoring different aspects of
health and well being are becoming popular as they can offer person-
alised approaches to self-management or support healthy lifestyles
and behaviours (Free et al., 2013). Some mobile apps exist that could
be useful for people with dementia, such as those offering music,
memory aids or medication management (Alzheimer’s Association,
2016). However, software applications are rarely designed with
people with dementia in mind and very few studies have specifically
evaluated mobile health apps for people with dementia and their F I G U R E 1   Steps in the framework approach
carers (Bateman et al., 2017). This narrow approach to developing
health technology is typical, as generic digital products and services 2. What value did the mobile application have for people with de-
are often created and trialled with limited input from people living mentia and their carers?
with dementia or their carers (Topo, 2009). This can result in poorer
quality health apps that do not meet patients’ needs and which can
be difficult to use (Arnhold, Quade, & Kirch, 2014; Demidowich, Lu, 2 | M E TH O DS
Tamler, & Bloomgarden, 2012).
In response to these shortcomings and to help implement the UK The study adopted a qualitative exploratory design as it sought to
national dementia strategy, a digital initiative was launched to involve understand the context of co-production and the everyday value of
people with dementia and their carers in the design of a mobile ap- the app from the perspectives of people with dementia and their
plication that would stimulate memory and communication by shar- carers. The study was undertaken based on the principles of re-
ing memories together. It was a collaboration between a museum, search ethics (Beauchamp & Childress, 2013), and ethical approval
a software company, and a National Health Service (NHS) hospital was granted by a university ethics committee.
trust. Through an initiative called Innovate Dementia (http://www.
innov​atede​mentia.eu) a series of living laboratories were run to de-
velop new products and services for people with dementia. This pro- 2.1 | Participants
cess enabled staff from the museum, who were keen to exploit their
digital archive, to meet people with dementia and professionals from A purposive sample of people with dementia and their carers who
a local hospital trust, who together conceptualised the app. A tender were involved in co-producing the app were recruited via the mu-
to develop the software was then released and contracted to a local seum. The manager from the museum and principal engineer from
software company and an occupational therapist from the hospital the software company were also recruited to the study, as their roles
helped coordinate a dementia patient advocacy group to take part in enabled them to have an in-depth understanding of the co-design
the co-design activities. The app was developed through a series of process. Informed consent was gained in writing after a briefing on
interactive workshops held at the museum, where the look, feel and the research study was provided and all those contacted agreed to
function of the technology were created over a number of months. participate. In total, six people agreed to take part; three of whom
At each workshop, people with dementia and their carers would dis- were women and three men. The two people with dementia (both
cuss the design and content of the app, review the latest version and male) and their carers (both female) were over the age of sixty-five,
make suggestions on how to improve it which the software company and the manager (female) and software engineer (male) were be-
would take on board. Therefore, the aim of this study was to exam- tween 40 and 60 years of age.
ine the experiences of people with dementia and their carers who
participated in this co-creation process and explore what value the
app had when used by people with dementia and their carers. The 2.2 | Mobile application
research questions were as follows:
The mobile application had a number of functions to help stimu-
1. How did co-creating a mobile application affect people with late memory and enable people with dementia to communicate
dementia and their carers? with others through the recollection and sharing of past events and
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life stories. Firstly, the museum preloaded the app with pictures of
objects in their digital archive, which were enhanced with sounds,
music and simple descriptions. These objects ranged from past and
present city buildings, to historical and cultural locations, and impor-
tant social events that had been curated by the museum over the
years. These digital artefacts could be browsed using the app to sim-
ulate conversation with family and carers about the local region and
memories they may have shared individually or together. Secondly,
personal objects such as photographs, videos and music could also
be added by users and electronic notes made around what the ob-
ject was and what it meant to the person with dementia. These were
combined to provide a digital profile of the person with dementia
on the app, enabling carers to understand who they were and what
was important to them. Thirdly, a memory tree could be created on
the app by combining the digital content into a story format with
a timeline. These features were included to help stimulate memory
and conversations between a person with dementia and their family
and carers. A “Help” function was also included in the app to show
people how to use it.
2.3 | Data collection
An interview guide was developed from existing literature and
piloted with professionals who specialised in dementia. Semi-
structured face-to-face interviews were conducted. These were
done with two people with dementia and two carers in their homes
and lasted approximately 30–40  min each. Telephone interviews
were then undertaken with the manager from the museum, and the
principal software engineer involved in co-designing the mobile ap-
plication. Field notes were also taken by the researcher during data
collection. All data were audio-recorded, transcribed verbatim, an-
onymised, and checked for accuracy.
2.4 | Data analysis
The interview data were analysed thematically using the frame-
work approach (Ritchie & Spencer, 2002). This consists of five
stages of analysis, outlined in Figure 1, which are (a) familiarisa-
tion, (b) identifying a thematic framework, (c) indexing, (d) charting
and (e) mapping and interpretation (see Figure 1). Upon reading
the interview transcripts and listening to the audio files, prelim-
inary themes were noted and coded using NVivo QSR 10.0. As
this process progressed and more interviews were analysed, an
initial coding framework emerged with a number of themes and
subthemes. When complete, this framework was reapplied to
the entire qualitative data set to ensure coding was undertaken
consistently. The next steps involved comparing the themes and
subthemes both within and across cases to explore relationships
between them and to identify any patterns. This enabled a rich
description of participants’ views on co-designing mobile applica-
tions to emerge.
2.5 | Rigour
The four elements of trustworthiness, (a) credibility, (b) depend-
ability, (c) confirmability and (d) transferability, were employed
to improve the rigour of the research findings (Lincoln & Guba,
1985). Informal debriefings with experienced research colleagues
throughout the research process and interpretation of transcripts
and field notes were used to improve the credibility of the results
and minimise researcher bias. Furthermore, the researcher had no
direct involvement in the design and development of the mobile app
and only conceptualised this study once the project had concluded.
To enhance dependability, clear descriptions of the methods used
were reported and samples of coding were checked by a senior re-
searcher. Confirmability was increased by listening to the audio re-
cordings and comparing them against transcripts and triangulating
results through the variety of participants that were interviewed.
Finally, a clear overview of the mobile application and qualitative
quotes for each theme provided to support the findings and their
transferability to other contexts.
3 | FI N D I N G S
Three themes related to the experience of people with dementia and
their carers involved in co-designing mobile technology emerged.
These were new knowledge and skills acquired, a sense of pride
and achievement, and a social outlet. A number of themes related
to the value of the digital application for people with dementia and
their carers also arose, as it seemed to help stimulate memory and
cognitive function, facilitate communication and provide a sense of
normalcy.
3.1 | Experiences of co-designing mobile technology
3.1.1 | New knowledge and skills acquired
The first theme associated with the benefits of the co-design pro-
cess was that people with dementia and their carers learned new
knowledge and skills by participating as they interacted with each
other, a team of software developers, a clinical practitioner and his-
torians from the museum. As the workshops involved using mobile
devices, in particular tablet computers, the people with dementia
and their carers improved their technical knowledge and skills about
how this technology worked. This gave them personal satisfaction
because they learned to master a new technique or watched as a
loved one begin to use new technology which they never thought
possible.
And then as it developed, it got better and better and
we’ve become au fait with technology you know [laugh-
ing]. And we’ve been talking this technology language
O’CONNOR
it’s been great. You always say people with demen-
tia can’t learn new things but that proved it they are
wrong.
[Person with dementia, Male, Participant 3]
For me the best of this was X [person with dementia]
using this tablet. I never thought he would be able to do it
all and he amazed me and now he’s good with it and the
Y [project] was so brilliant.
[Carer, Female, Participant 2]
People with dementia and their carers also gained softer skills from
taking part in the co-creation sessions as their interpersonal and com-
munication skills improved by working as part of a collaborative, inter-
disciplinary team over a number of months. They also shared what they
were doing with a wider network of people with dementia through a
local Service User Reference Forum and represented the project at
local and national events, which further enhanced their abilities and
skills.
But this is what I was saying it just progressed from there,
each time we come together there is something else lead-
ing from there, I mean think of all the things we’ve done
since we did the app it's just incredible, things we learnt
and different ways of doing different things and that you
know so I think that has been really fantastic.
[Person with dementia, Male, Participant 1]
3.1.2 | Sense of pride and achievement
People with dementia and their carers also gained a sense of achieve-
ment and pride from being involved in the co-design process as they
helped to create a unique piece of technology that they knew would
benefit other people diagnosed with dementia and their families.
I think the greatest achievement and sense of pride was
they come into a room with a blank piece of paper, and
put that piece of paper on the table and from that blank
piece of paper we are actually see something develop to
something that we can actually touch and use and every
one of us knows that that is going to be of benefit to peo-
ple with dementia.
[Project manager, Female, Participant 5]
Oh I know it is good. There is just so much we got from it
and it think also it was the pride for all of us because we
you know we had all helped on it and here was this thing
done and we were all part of it. It was good wasn’t it that
way; you know all of us felt.
[Carer, Female, Participant 2]
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Those who participated in the co-design process also appreciated
that mobile devices were easy to use and widely available to many peo-
ple, so the software created would be available to others for a long
time to come. The fact the app was easy to maintain and sustainable
made participants feel satisfied with the outcome of the co-creation
sessions and their involvement, as the mobile app would be accessible
for people and their families once they were diagnosed with dementia.
And we’ve just made it very easy for people now haven’t
we, we have made it easier now the younger ones that
are going to get diagnosed with dementia because it's
going to be there for them and that makes a difference,
that makes me feel happy.
[Person with dementia, Male, Participant 3]
3.1.3 | Social outlet
The last benefit that people with dementia and their carers gained
from being involved in co-producing new technology was enjoying
the social aspect of the workshops and friendship formed with oth-
ers from their local community.
accept that it’s a social event for them, definitely, and
partake in that. They are not there to work really, they
are there to have fun and its part social as well
[Software developer, Male, Participant 6]
we all have something to bring to it don’t they so we are
all talking about something different because each cou-
ple have a different thing what they do with it so we are
always sort of, I always think well we have made all these
lovely friends because it was [person with dementia] 80th
last year and I remember saying I’d asked all the helpers
and the carers to come as well, well it was just fantastic
[Carer, Female, Participant 4]
3.2 | Value of the mobile application
3.2.1 | Stimulate memory and cognitive function
The mobile application appeared to have value for the people with
dementia and their carers who used it. One benefit was it seemed to
stimulate people's memory, which provided some comfort to those
suffering with dementia as they could rely on the technology to cap-
ture and keep important personal memories that they could draw on
in the future. This also relieved some of the carers’ burden who knew
the app could support their loved ones’ to remember special events
and activities that would make them happy.
I think for me I’m confident that in the future you know
when I’m inevitably going to lose more of my memory
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I’m sure that I’ll use it even more, the device with my
family and that will help me, not halt the disease or
anything but help alleviate the deterioration a bit, be-
cause it’s there and it’s my memories, a lot of it is my
memories that are on there and I think that’s a very
valuable thing. It’s not somebody else’s memories it’s
mine and I’m sure the trigger of seeing those things will
be of benefit to me later on
[Person with dementia, Male, Participant 1]
whatever stage you are in as you said about [person with
dementia] he could do that and you could see him light
up, you can see him smile so it's triggered his memory and
that is the most important thing isn’t it
[Person with dementia, Male, Participant ID]
The app was also useful for both people with dementia and their
carers, as the interface and functionality was engaging to use with
a range of interactive features that seemed to stimulate cognitive
function.
yes we can put our own pictures on and we can make a
jigsaw out of the pictures and em, you can have a go, and
you can do so many things with it and eh it’s also things
like stimulation – you’ll be stimulated by it – because it
also has an element of challenge
[Carer, Female, Participant 2]
3.2.2 | Facilitates communication
People with dementia also used the mobile app to communicate
with family and friends, as they could share personal histories and
stories much more easily, even if they had difficulty speaking. The
fact information on the app was represented visually made it more
straightforward to communicate complex ideas and topics that
would be challenging to discuss for people in the later stages of
the illness.
The hardest thing for people with dementia is commu-
nication, we know what we want to say and I know a
lot of people in the later stages I’ve spoken to them and
they want to say something but it won’t come out but …
we can even point at something on a picture, a picture
paints a thousand words so that saves us a thousand
words … so we can actually steer the conversation just
by directing.
[Person with dementia, Male, Participant 1]
The app also helped older adults with dementia to communi-
cate with and relate to younger family members in particular, as the
technology was a two-way medium through which they could share
musical and other common interests.
I like to listen to the music on it as well because once you
do your timeline you can have some music playing. And
for instance when X [granddaughter] looks at it and she
heard the music, she said oh that’s from my ballet, that’s
from the Nutcracker and she was able to relate to it as
well
[Person with dementia, Male, Participant 1]
3.2.3 | Provides a sense of normalcy
The final benefit people with dementia and their carers gained from
using the mobile application was it helped to distract them from the
illness and its effect on their personal and professional lives. This
provided a sense of normalcy as the app reminded them of other
aspects of their life that were important to them.
Yeah we liked the sex pistols and stuff and all that type
of thing. And it's nice to be normal isn’t it. Do something
normal instead of just dementia … that’s what you are
doing really. Yeah because that word dementia you live
and breathe it.
[Person with dementia, Male, Participant 1]
The app, whether it was used on a smartphone or tablet device,
also seen as a form of entertainment as people could watch videos
and listen to music, which helped distract them from their illness
or caring responsibilities and enabled them to relax and enjoy a lei-
surely activity.
now they have put music in because music to people with
dementia is the greatest thing ever, because it just brings
us alive, it makes us comes alive, we feel great
[Person with dementia, Male, Participant 3]
or the maritime history of X [English city] is just fantastic
you know it's, every time I look at it I find something new
on it that’s what I like about it and to hear music in the
background that’s soothing isn’t it
[Carer, Female, Participant 4]
4 | D I S CU S S I O N
4.1 | Overview of findings
The results of this study indicated there are several advantages for
people with dementia and their carers by taking part in co-creating
mobile technology. These include gaining new knowledge and skills,
particularly around improving digital literacy, as well as broadening
O’CONNOR
their social circle through new friendships and feeling satisfied by
accomplishing something novel that will benefit others with the ill-
ness. The digital application also seemed to improve the quality of
life for people with dementia as it helped stimulate their memory
and cognitive function and enabled conversations with family mem-
bers and carers, while providing a sense of normalcy to day-to-day
life and a distraction from their disease.
4.2 | Comparison with existing literature
The findings of this study are supported by other research relat-
ing to dementia. Co-design has been showed to give participants
a range of skills as Rodgers (2018) reported people with demen-
tia learned how to develop new textiles and improved their crea-
tive skills during co-design workshops. Tsekleves, Bingley, Luján
Escalante, and Gradinar (2018) arranged for people with dementia
to be involved in co-creation through a series of participatory-
based art sessions and also found they learned to make musical in-
struments. In addition, the social element of the process appealed
as some of the participants worked in teams and seemed to en-
joying interacting with each other. However, as co-design usually
incorporates a small number of people, due to the practicalities
involved, its direct benefits can be limited to just the people with
dementia and their carers who take part. This limitation has also
been highlighted by others who have used participatory methods
to involve clients in redesigning health services (Steen, Manschot,
& De Koning, 2011; Tsianakas et al., 2012).
The most important outcome of the co-production process
was the value the mobile app had for people with dementia and
their carers who used it. In keeping with the findings of this study,
a Cochrane review suggested that reminiscence therapy shows
promise for people with dementia as current evidence indicates
it can improve cognition, mood and general behavioural function.
The review also reported reminiscence therapy can help reduce
caregiver strain, although it recommended larger more robust
clinical trials are necessary to substantiate these findings (Woods,
O’Philbin, Farrell, Spector, & Orrell, 2018). Furthermore, Capstick
and Ludwin (2015) noted that people with dementia who were in-
volved in co-producing a short film about their lives used it as a
form of escapism from worries about their illness, preferring to re-
flect on the past. Similar results were found by Wallace et al. (2013)
when co-designing jewellery with people with dementia, which fits
well with this study.
Although mobile apps are becoming more popular as a way to
understand and manage different aspects of health and wellbe-
ing (Eapen & Peterson, 2015; Gagnon, Ngangue, Payne-Gagnon,
& Desmartis, 2016), in contrast to the findings of this study, their
quality is sometimes questionable as many can be generic and not
developed with the needs of patients or carers in mind (Cummings,
Borycki, & Roehrer, 2013; Rosser & Eccleston, 2011). Furthermore,
there is a lack of evidence for the safety and efficacy of many health
apps (Buijink, Visser, & Marshall, 2013; Stoyanov et al., 2015).
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Therefore, as this study highlighted, co-design could be one useful
way to create better quality mobile apps that personalised to the
needs of people with dementia or those with other chronic health
conditions.
4.3 | Recommendations for future practice,
education, research and policy
There are many approaches to the participatory design of health
technology and health services such as ethnography (Tsianakas et
al., 2012), video narratives (Locock et al., 2014), or a combination
of methods such as those used in Experienced-based Co-design
(EBCD) (Bowen et al., 2013). More research on which co-production
techniques work well for people with dementia and their carers
would be helpful to ensure mobile health solutions are good quality
and suitable for users. How tailored health apps can become is de-
batable as the resources required to personalise these technologies
must be offset against the time and cost available to produce them.
Another difficulty is that co-design often involves a small number of
people, so it may not be feasible to create specific technical solutions
that meets the needs of every single patient or carer, particularly
those with multimorbidity (O’Connor, Deaton, Nolan, & Johnston,
2018). Further research on how to balance the different elements
of the co-design process to ensure the outputs benefit patients and
carers would be useful. Additional qualitative work would be useful
to corroborate the impact this, and other mobile applications that
have been co-produced, have on the lives of people with dementia
and their carers as this study suggests they can have some valuable.
A clinical trial could provide more definitive answers about the ef-
ficacy of the app in terms of improving cognitive function and quality
of life for people with dementia, as has been done in other studies
(Kauer et al., 2012; Reid et al., 2012). Given that the concept of co-
production is being included in national health policies in some coun-
tries and is proposed as a way to improve services and outcomes
(Scottish Government, 2018; NHS England, 2019), more research is
needed on whether this approach is worthwhile to pursue as it can
be time consuming and expensive.
The mobile app market has been growing rapidly the last few
years with a plethora of self-management and educational applica-
tions available for patients and their families, covering a range of
chronic conditions. A systematic review by Bateman et al. (2017)
found twenty-four apps for people with cognitive impairment with
some showing improvements in health outcomes, although the
quality of studies was low. Rathnayake, Moyle, Jones, and Calleja
(2018) also reviewed educational apps for family carers of people
with dementia, finding seven studies that suggested these types of
apps provided some support. Hence, health policies in some coun-
tries are starting to encourage citizens to utilise this technology for
self-care. However, numerous attempts have been made to regulate
mobile apps as no quality control process governs how they are de-
veloped (Hamel, Cortez, Cohen, & Kesselheim, 2014), leaving users
open to many risks such as loss of privacy, poor quality data, poor
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lifestyles choices or poor clinical decision-making among others
(Lewis & Wyatt, 2014). Bates, Landman, and Levine (2018) highlight
more stringent policies around safety, research, interoperability and
market innovation are needed in relation to mobile health to help
protect the public and ensure high-quality health services. There is
also some evidence that suggests long-term engagement with health
apps can be low (Chan et al., 2017). Therefore, further research ex-
amining if their use by people with dementia continues beyond the
initial period would be helpful, to determine whether it is worthwhile
for patients, practitioners, researchers and industry investing in this
technology.
4.4 | Strengths and limitations
This study has a number of strengths and limitations. A number of
stakeholders were interviewed helping to diversify the perspec-
tives gathered on the impact of the co-design process and mobile
application on people with dementia and their carers. The analysis
was strengthened by the use of coding clinics where researchers
independently read and agreed the coding of the primary data to
ensure it was as robust and reliable as possible. However, a small
sample of people took part, which may have influenced the themes
that arose, as their views on the value of the mobile app could have
been impacted by their involvement in co-design. For example, the
participants with dementia were both male and their carers female
and both groups had limited knowledge about mobile technology
and co-design. This may have affected how much they could partic-
ipate and contribute to creating the digital application, a problem
noted elsewhere (Hales & Fossey, 2018). In addition, the partici-
pants with dementia were in the early stages of the disease, having
been newly diagnosed, and they nor their carers had no experience
of the more advanced stages of the disease. This may have im-
pacted the design and functionality of the mobile app, potentially
limiting how useful it could be. Direct observation of participants
in the co-design workshops could also have helped to illicit more
detailed information on the advantages and disadvantages of this
process. Unfortunately, this type of approach was not feasible due
to the timing of the co-design sessions and length of the ethical
approval process for this study. Finally, the transferability of the re-
sults is limited as the study only explored one mobile health initia-
tive within a single geographical area of the United Kingdom, which
may not translate easily to other countries and cultures.
5 |  CO N C LU S I O N S
Mobile applications show promise in supporting people with demen-
tia and their carers. More participatory methods to create health
applications could help patients and carers as they are not often in-
volved in co-producing technology that meets their needs. Further
research in this space is needed to ensure the right technology is
designed, developed and tailored to the needs of people with de-
mentia and their carers.
6 | I M PLI C ATI O N S FO R PR AC TI C E
• Nurses should have knowledge of and education about technol-
ogy and how it can promote health and wellbeing of persons with
dementia.
• Nurses who care for people with dementia and their families
should support them in taking part in or leading the design of
technologies that meet their needs.
• Participatory design methods should be taught in nursing educa-
tion so the profession can provide guidance to patients and their
families on co-creating health products and services.
AC K N OW L E D G E M E N T S
The author wishes to express her thanks to the funding body and all
the participants who took part in the study. The views expressed in
the article are those of the participants and author and do not neces-
sarily represent those of the funding body.
C O N FL I C T O F I N T E R E S T
The author is one of the Associate Editors for the International
Journal of Older People Nursing. The author declares no other con-
flicts of interest.
AU T H O R S ’ C O N T R I B U T I O N S
The author conducted the qualitative data collection and analysis
and drafted the manuscript.
ORCID
Siobhan O’Connor  https://orcid.org/0000-0001-8579-1718
T WITTER
Siobhan O’Connor  @shivoconnor
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