Game for supporting dementia carers

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Game for supporting dementia carers
Noreena Yi-Chin Liu
Winchester School of Art
University of Southampton
Southampton,UK
Yl1d15@southampton.ac.uk
Gary Wills
Electronics and Computer Science
Southampton, UK
gbw@ecs.soton.ac.uk
Ashok Ranchhod
Winchester School of Art
Southampton, UK
A.Ranchhod@soton.ac.uk
Abstract— Dementia is one of today’s key public health
challenges, and affects the whole family as they learn how to
live with their family member who has the condition. Dementia
can cause total breakdown of family relationships as it
seriously challenges the family dynamics. The purpose of this
paper is to investigate games as an online platform to support
carers of people with dementia, using a new framework
incorporating education, health and social elements. The
framework was developed based on a literature review,
including the dementia carers’ needs, and games to support
dementia carers. The research methodology involved collecting
qualitative data. Expert interviews were conducted to identify
carers’ needs, and to ascertain the importance of the platform
to support dementia carers, which is related to the elements in
the framework. The framework was confirmed by the results
of the expert interviews; participants agreed that agreed that
communities are able to provide provide social support for
dementia carers, and are effective in assisting carers; that
games are able to achieve the education, health and social
elements; and that engagement is key for carers to be involved
with communities.
Keywords—Serious Game, Games for Change, Dementia
Carer
I. INTRODUCTION
Most of the research in the area of dementia is focused on
the dementia patients [1]. However, family members who
become carers are key people affected by a diagnosis of
dementia. Dementia carers need strong support to look after
dementia patients. The main problem is that carers do not
get enough support; this might cause emotional issues as
carers feel isolated, depressed and stressed [2]. Recently,
some organisations have been set up that offer support for
dementia in different ways, including information
programmes to build networks through which those
concerned can find out more information; peer support to
share experiences; and practical dementia advice and
emotional support. Some of these organisations educate
people about dementia and help them to understand
dementia. There are a few cities in England that have tried
to build up “dementia-friendly cities”, such as Manchester1
,
Southampton 2
and Bournemouth 3
. The purpose of a
dementia-friendly city is to try to help local citizens
understand dementia and how best to support those who
have the condition; for example, giving dementia patients
more time to do their daily tasks, including crossing the
road, shopping, and getting on buses.
Games could deliver information more effectively and help
create online communities to enable users to share their
experiences, as well as help the carers face the impact of
dementia in their own lives[3]. Games could also improve
the relationship between dementia patients and their carers
[4]. A game-based intervention could be a platform that can
help to educate people, and could also be a type of therapy
to relieve the carer’s stress and negative emotions. Human-
computer interaction is about understanding the user’s
experience and could help to build systems that better suit
the users’ needs [5]. Therefore, this research focuses on
interaction design to create engaging interfaces that
influence behaviours and actions; these designs use
technology and principles of communication to create the
desired user experiences.
Three main methods were highlighted to support and
inform carers: communities of fellow carers, stress-relieving
tools, and education about dementia [6]. In order to provide
these services, digital interventions were researched. From
this research, three main themes emerged: social marketing
[7], games [8], and social media [9]. Our conjecture is that
our framework, created using the concepts found in social
marketing, games and the use of social media, can help to
engage users and so help deliver the tools needed to support
carers. We also believe that these features can help engage
people in different platforms [10] [11].
1
http://www.swimming.org/dementiafriendly/manchester-
city-council/
2
http://www.southamptoncityccg.nhs.uk/news/making-
southampton-a-dementia-friendly-city-781
3
http://www.dementiaaction.org.uk/local_alliances/21277_d
ementia_friendly_bournemouth

II. RELATED WORK
A diagnosis of dementia can be a very stressful and
challenging time for family members, particularly for those
directly assisting the member with dementia. The patient’s
carers play an important role in providing treatment.
There are different ways to support dementia carers, such as
psycho-education, support and information, training courses
and involvement of other family numbers [12]. Dementia
patients and carers might need psychological education and
also might need to have a community within which to share
their experiences [12]. An education platform would
encourage dementia carers to understand dementia and offer
knowledge to support this group.
Social support is an important service for dementia carers.
Communities help carers share information and
communication about their problems. This addresses the
burdens that carers face which include the carer’s physical,
mental and social wellbeing. Most research in this field is
focused on the carer’s knowledge and psychological
morbidity. Psychological education is about understanding
how best to cope with a mental health condition so that a
mental health patient can live as good a life as possible.
Support dementia carer is focused on three areas; these are:
(1) Raising awareness — regarding human rights issues,
local networks, and rescues, in order to raise the awareness
of the public health issues and improve the physical
environment; (2) Sharing daily life — continue their daily
life in the communities. (3) Sharing experience and
resources — sharing the ideas offers support to each other.
A. Game for Change
The primary purpose of serious games is not entertainment.
For example, advergames are promotional tools for
particular products [13]. Educational serious games are
primarily learning tools. The field of serious games for
health aims to supply education- and health-associated
behaviour change by delivering messages and user
experiences in an engaging and entertaining format [14].
Gamification is the addition of game elements within a
given situation, to increase a user’s motivation and
engagement [15]. Games for social change have been used
to raise public awareness of social issues, such as human
rights, climate change and public health, ; and help to
address these problems [16].
The purposes of games for change can be divided into three
areas — health, education and social:
• Games for health and well-being: these are focused on
physiology or psychology approaches. Examples of
physiological initiatives include brain training, or linking
with outdoor activities. Psychology is linked with
education; when users understand their situation, they will
change their behaviour (such as “Fitbit”, where users can
use their “Fitbit” application to monitor their fitness or
reduce their weight) [17].
• Games for education: Learning new things via a gaming
platform, such as “Ice Flow”; in this game, players can
understand about the issues in global warning, and why it
should be taken seriously [18].
• Social games: These can be linked with communities to
increase their size. Social games can also be used to
connect people interested in the same social issues (e.g.,
“Let the Cat in”, which talks about street animals).
Therefore, social games should also be able to connect
with well-being purposes, such as increasing community
sizes, and providing people with a way to share their ideas
on a new platform [19].
B. Games for Dementia Carers
Most of the research for dementia using technology is
focused on brain training. One example is the work of
Professor Simone Kuhn at the Max-Planck Institute of
Human Development in Berlin, who researched the effects
of video games4
; Kuhn used a currently existing game,
“Super Mario 64” (an action-adventure game). However,
there are some games for mental health issues to describe
patients’ situations, such as Elude. There is a game called
“That Dragon, Cancer”, which shows how the parents look
after their child with cancer, in turn showing how carers face
their problems. From these examples, gaming could be used
to educate carers of people with dementia, as well as
improve carer’s well-being well-being by engaging with the
game’s story.
Designing games for dementia carers could focus on the
health-through-the game-story. During gaming, the players
acquire information to improve their health knowledge.
Once a player has received the health knowledge, this could
improve their behaviour and thoughts about the issue they
are dealing with. In this case, games can provide the basic
knowledge about dementia for carers. Once carers
understand dementia they also better learn how to live with
dementia. Subsequently, they are less likely to become
stressed and their ability as carers increases.
Designing for social change is related to advertising design.
Advertising design is about promoting a market product,
where it may have some issues that have prevented it being
successful in the market space; this is achieved using
different forms of advertising, such as raising awareness,
changing stereotypes, and promotions. Social change is
about raising awareness of issues such as human rights,
political parties, and global issues [20]. Games for dementia
carers can be a platform that provides opportunities to solve
4
https://www.mpg.de/research/video-games-brain

their problems and intervene in social situations to improve
their quality of life [21].
III. THE FRAMEWORK DEVELOPMENT
This purpose of this research is to help improve the quality
of support for dementia carers using games. The literature
review explored dementia carers’ needs, games for change,
and games to support dementia carers. Based on the
dementia carers’ needs, a “games for change” framework
was developed in Figure 1. Table I shows the main elements
identified from the literature. Engagement was identified as
a key element to support carers of people with dementia.
Games for change seek engagement along three elements,
which are Social Marketing, Social Media, and a Game as a
platform to support learning. According to the literature,
carers need good health and wellbeing, as well as education
and social support.
Fig. 1. Games for dmentia carer elements
The way in which social marketing interacts with games for
change is shown in Figure 2. Social marketing provides the
knowledge to achieve social impact. Games for change as a
platform encompass three functions, which are to educate,
improve health and well-being, and help with socialisation.
The framework is focused on different areas of research.
Social marketing can be used to change the markets’
perceptions or drive a social change, and change people’s
behaviour or thinking. Social media can be used to share
information and engage with people. Games can be used to
educate, improve the user’s health and well-being or tell a
story. The social, health and education elements are
components which support the dementia carer, while social
marketing, social media and game elements construct a
platform for designing games for change.
Engagement is the main element in the framework, and the
key component is health. Health awareness is strengthened
through education, and the social media element can support
this. Game is an important platform in the games for change.
Games collaboration with social media can involve users to
create online communities, and social marketing is able to
raise awareness of the health issues (Figure 3).
TABLE I. ELEMENTS OF RESEARCH
Fig. 2. Social marketing interaction with games for change
Elements Existing literature
Social marketing
The literature supports the conjecture that
social marketing can change people’s
behaviour and increase their engagement.
Social media
The literature review explains that this can
increase engagement and help with health and
well-being issues of users. The communication
between users leads to communities being
formed.
Game
The literature review shows that game of
products is an increasingly popular choice and
leads to more engagement with users.
Games for change
Games can engage people and change their
behaviour and thinking.
Engagement
This is important. Without increasing this,
games will not help many carers.
Carers
This is the target audience of this research, and
there is a lack of current studies focusing on
how to help them.
Education
The literature review shows that many games
now strive to educate people in a fun way.
Health
There is a lack of studies investigating how
games can reduce a person’s stress, except by
teaching them.
Social
Social media can lead to online communities.
The other factors can increase the size of this
community.

Fig. 3. Conceptual Framework
IV. METHODOGY
The conceptual framework reframes the issues arising from
two main areas in the literature, which are carers’ needs and
games for change. From the literature, carers’ needs were
identified as having three elements (Education, Health and
Well-being and Social interaction). Games for change are
digital games which include social marketing, social media,
and game play. Expert interviews were used to confirm the
framework for supporting carers’ needs while looking after
people with dementia.
Interviews are used to collect qualitative data [22].
Individual interviews involve one-to-one discussions
between the participant and the interviewer. The advantage
of the individual interview is that the participant can give
more opinions and more detail. On the other hand, group
interviews may have a group effect [23], where the group
will follow the leader, or the majority of the group’s ideas.
In order to identify requirements for the proposed solution,
expert interviews were carried out with a variety of experts
to gather qualitative data to help identify carers’ needs, and
to ascertain the importance of the various issues in the
framework. These interviews were conducted with experts
in organisations that focus on people with dementia, in order
to gain a deeper understanding of carers’ needs whilst
dealing with a family member who has dementia. In
addition, academics were interviewed to understand relevant
recent research related to health sciences, social sciences
and gaming.
Two types of participant were used. These are listed below:
1. Organsaation: Event organisers in local
organisations and communities (Alzheimer’s
Society, Dementia Friends, etc.), a general manager
in a local care home, a commissioner in NHS
Southampton, and physical therapists in hospitals.
These participants were based in Hampshire.
2. Academic: Researchers and staff in universities in
the UK.

In this study, a total of 11 participants were interviewed;
seven participants were from organisations and four
participants were from universities.
For the expert interviews, a combination of open questions
and multiple-choice questions were created; this allowed the
interviewee to answer more extensively about the
framework. The multiple-choice questions were focused on
the three areas of the framework: the carers’ needs, games,
and engagement.
V. DATA ANALYSIS AND RESULTS
An interview analysis was used to assess whether an
intervention can raise awareness of dementia and help
improve carers’ health in different ways, such as by them
acquiring a better understanding of dementia and how to
cope with the stress of being a carer. This was to identify
cthe problems carers face and assess how technological ideas
can help solve them. In particular, the study aims to find out
how games can raise awareness and reduce the stress
experienced by carers. The interviews address the three areas
of carers, intervention and engagement.
A. Interview Analysis
From the expert interviews, three main areas of dementia
care were explored; these are: needs of carers for people
with dementia, interventions to help carers, and how to use
engagement to support dementia carers by building up
communities. The main challenges for dementia carers
include time, finances, emotions, isolation and finding the
right information at the right time.
According to the experts, dementia carers find it hard to find
the right information and get support. Dementia carers
might not be able to understand dementia, or really know
how to live with dementia.
“A lot of carers said that they don’t know what the
resources are around there for them or just support their
own role as carers.”
“Carer can feel very, very low, depression, can be
depressed and anxious. A lot of time they feel that coming to
the group is a social interaction and support for them as
well as for the person with dementia. Depending on what
family they get, the psychology support can be a challenge
for them. Depending on their support network. Helping them
to improve their network.”
“That most definitely is isolation and also support network.
It is getting better but in illness a lot of family carers don’t
get support as they need. So they struggle on and struggle
on and generally the point they get to where they are
looking for help, they almost burn out because they cannot
carry on anymore. For me, it is a massive challenge for
them.”
“Firstly, they might not even understand what dementia is.
So they would struggle to deal with the person with
dementia.”
“They need to not just take over the tasks but actually
encourage people with dementia to continue to do the tasks
like making their bed or helping with the washing up …”
The experts believe that technologies can be useful in
helping dementia carers. However, the effect of using
technology is not always positive, particularly with older
adults, as it might be very frustrating to achieve a task.
“Many people are using games or apps —things like that.
And if you make like fun games which are also educational,
it kind of promotes a bit more and means more people are
going to play it and recommend it. Then you still get the
message across about dementia as well which I think is
important.”
“The actual process to do the game might be good fun, but
at the end of this they’re feeling more stress because it
actually just makes them more aware of what could be
happening in their life.”
From the experts’ points of view, engagement with carers is
a key factor to providing support. It does not matter whether
it is through local communities or online communities; the
support should include raising awareness of issues, reducing
stress, and sharing information.
“Engaging people and actually getting people to recognise
and face the fact is difficult. They also need to be given some
confidence; that they have dementia is not the end of the
world, but it can be very sad.”
Below is an example from one expert’s experience about
running a local community engagement project with
dementia patients and carers.
“That might be a valuable thing for carers, as they haven’t
got anywhere to go to release their stress, they might have
just sat at the computer and typed it all out; it’s quite
therapeutic to release that stress, even know it’s not useful,
but it is useful for the person using it because in that way
they can release stress.”
Most experts agree there are available methods to support
dementia carers; one expert, however, disagreed that there is
enough support. However, while the experts think there are
available resources for carers, they disagreed that they
covered every aspect of carers’ support. Most experts did
not think that every aspect of caring or carers’ needs was
covered. One expert wavered between disagreeing and
agreeing because things change very quickly; things could
be different when new discoveries are found in the future.
The majority of experts agreed or strongly agreed that
games are able to educate people in entertaining ways while
also being able to reduce people’s stress. One expert did not

believe, though, that serious issues could be addressed in fun
ways such as games, although they did struggle with the
word “game”. Some experts did not really believe that
interventions can help carers’ stress, or were not really sure
how to use games to reduce stress and teach users. Most of
the experts’ backgrounds were within the health sciences,
social sciences and society. Thus, the experts were confused
about “games”. However, the majority of experts agreed or
strongly agreed that social media can increase the size of
communities.
B. Comparing the Means of the Elements
This section is reports multiple-choice data about the
expert’s points of view and points out their different
thoughts. The multiple-choice questions were used to
summarize the experts’ feedback. The purpose of the study
was to confirm and improve the framework. This section is
analysed in three parts; carers, games and engagement.
H0: The mean ranking of each items is not different form its
corresponding null value.
H1: The mean ranking of each items is different form its
corresponding null value.
The normality tests shown in table II were used to check the
participants’ data for normality. The Kolmogorov-Smirnov
and Shapiro-Wilk tests had significant results (p< 0.05) on
the data (see table III), indicating that all the data is not
normally distributed. Form test statistics, the participant’s
responses for each of items differed significantly for each
element ‘s null value(p<0.5) in table IV. Therefore, a t-test is
not appropriate to use to compare the means, because the t-
test assumes that the sample distributions of the data are
normal. For this reason, an alternative non-parametric test
was used to compare the means, because it does not assume
the data distribution is normal.
TABLE II. OUTPUT OF THEN NORMALITY TESTS
KOLMOGOROV-SMIRNOV
A
SHAPIRO-WILK
Statistic df Sig. Statistic df Sig.
Available item for carer .301 22 <.001 .738 22 <.001
Cover every aspect .372 22 <.001 .719 22 <.001
Games can educate people .305 22 <.001 .770 22 <.001
Games reduce stress and
teach users
.305 22 <.001 .765 22 <.001
Social media increase
person’s community size
.309 22 <.001 .695 22 <.001
Intervention change
people’s behaviour and
thinking
.305 22 <.001 .684 22 <.001
Social marketing can change
people’s behaviours to
increase engagement
.367 22 <.001 .630 22 <.001
Social media build up online
community
.346 22 <.001 .724 22 <.001
Social media increase
engagement to help health
issues
.311 22 <.001 .755 22 <.001
Game engagement with
users
.315 22 <.001 .677 22 <.001
Engagement is key thing for
carer
.279 22 <.001 .717 22 <.001
a. Lilliefors Significance Correction
TABLE III. MANN-WHITEY TEST RESULTS
Ranks
Group N Mean Rank
Sum of
Ranks
Available item for
carer
Participants 11 16.00 176.00
Null 11 7.00 77.00
Total 22
Cover every aspect Participants 11 8.50 93.50
Null 11 14.50 159.50
Total 22
Games can educate
people
Null 11 7.50 82.50
Total 22
Games reduce
stress and teach
users
Null 11 8.00 88.00
Total 22
Social media
increase person’s
community size
Null 11 6.50 71.50
Total 22
Intervention
change people’s
behaviour and
thinking
Null 11 6.50 71.50
Total 22
Social marketing
can change people’s
behaviours to
increase
engagement
Null 11 7.50 82.50
Total 22
Social media build
up online
community
Null 11 7.50 82.50
Total 22
Social media
increase
engagement to help
health issues
Null 11 7.50 82.50
Total 22
Game engagement
with users
Null 11 6.50 71.50
Total 22
Engagement is key
thing for carer
Null 11 6.00 66.00
Total 22

TABLE IV. TEST STATISTICS
Availabl
e item
for carer
Cover
every
aspect
Games
can
educate
people
Games
reduce
stress and
teach users
Social media
increase
person’s
community
size
Intervention
change
people’s
behaviour
and thinking
Social marketing
can change
people’s
behaviours to
increase
engagement
Social
media
build up
online
community
Social media
increase
engagement
to help
health issues
Game
engag
ement
with
users
Engage
ment is
key
thing for
carer
Mann-Whitney U 11.000 27.50
0
16.500 22.000 5.500 5.500 16.500 16.500 16.500 5.500 .000
Wilcoxon W 77.000 93.50
0
82.500 88.000 71.500 71.500 82.500 82.500 82.500 71.50
0
66.000
Z -3.674 -2.569 -3.218 -2.861 -4.005 -4.062 -3.425 -3.218 -3.198 -4.114 -4.338
Asymp. Sig. (2-
tailed)
.000 .010 .001 .004 .000 .000 .001 .001 .001 .000 .000
Exact Sig. [2*(1-
tailed Sig.)]
.001b
.028b
.002b
.010b
.000b
.000b
.002b
.002b
.002b
.000b
.000b
a. Grouping Variable: Group
b. Not corrected for ties.
From the results of comparing the means in table 3, the
experts thought there are available items to support
dementia carers, but they do not think that they cover every
aspect. Experts thinks support for dementia carer is still on
going “we still learning different things, like what we done
here, inside 10 years they’ll find out better things to do, so it
is ongoing.” And also dementia carer hard to find the
resources such as “From my perspective, I think probably
the biggest challenge for carers is around accessing the
information. We do have quite a lot of services in the city for
people with dementia for their carers but I kind get feedback
actually some of the literature on the internet was out of
date.”
They also think games are able to achieve the education and
health elements, and that social marketing and social media
can be successfully used in certain ways, such as increasing
community size and increasing engagement. Combined with
social marketing, social media and games can be used as
interventions to change people’s behaviour. Social
marketing, social media and games also help to engage
people. From the experts’ point of view, engagement is the
key to helping carers build up online communities, deliver
education and reduce stress. For example: “Engaging
people actually get people to recognising and face the fact is
difficulty. They also to give some of confidence. What they
get dementia is not the end of world it can be very sad.”
VI. DISCUSSION
Interview experts are fist stage of research as a part of
confirm the conceptual framework. According the expert
interviews result, finding the dementia carers needs. The key
challenge of dementia carer is they don’t have enough
knowledge about dementia. The information about dementia
needs to be improved. The technologies for older adult
might be hard to achieve, but it might work as generations
change. Also it could be build up the platform as simple as
possible for, Giving the messages through game would be
more meaningful. Games also maintain the relationship
between dementia and carers. Engagement is main support
for online communities and local communities.
Communities could help each other also dementia carer
might be feeling isolate and stress. Thus, involved with
communities could help dementia carer’s negative emotion.
According to the result with the framework elements, game
with education element be able to deliver the knowledge for
dementia carer through the game’s messages and experience
to improve health behavior. Social elements are successful
platform. Even though it is complex to involved with online
and offline community.
VII. CONCLUSION AND FUTURE WORK
The current related work was discussed dementia and
dementia carer’s need. Conceptual framework development
based upon common themes of carer’s need. The expert
interview is confirm the conceptual framework. The
objective of the research was to understand the carers’ needs
when using games for change to help the carers manage
people with dementia. There are many ways to get
information about dementia, such as websites, communities,
or workshops. The main problem is how to help carers of
people with dementia to get the right information at the right
time, as well as how to find the right people to talk with
about their problems. Technology might be complicate for
some groups of people to use, but its affordance is that it is a
quick and easy way to share information and share thoughts.
Therefore, creating online communities for specific issues of
dementia is an effective tool to assist carers.
This type of “games for change” framework can also be
used for carers in different health domains, such as mental
health. Examples of this include:

• Post-traumatic stress disorder (PTSD) – This type is very
similar to dementia; they will lose their memory, but they
can get treatment to get back to their normal life [24].
• Schizophrenia: This type of mental issue will depend on
how well they can cope with it. It is very important for the
family to listen and help them [25].
• Drugs (recreational drugs & alcohol): recreational drugs
and alcohol are involved with mental problems [26].
Games for change provide a platform to help patients
understand themselves and provide guidance for their
friends and families.
In the previous paragraph discussed the challenge and
problems the dementia carers face. In order to support
dementia carers, communities could be set up, and health
and education for dementia carers can be provided.
Framework was confirmed by interview experts. The future
work involves 3 phases, including development, validation
and evaluation. The first phase, Development, will involve
developing a metrics table based on the framework using the
GQM (Goal, Question and Metric) approach. The second
phase, Validation, will involve piloting the metrics with
academic researchers in universities. The final stage,
Evaluation, will involve testing a set of games using the
metrics table. The games will be tested with game industry
professionals. The intention of the study is to see if game
designers, developers and researchers can use the metrics
reliably. They will also be tested with dementia carers, in
order for their needs to be taken into account.
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