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Engaging in Participatory Community-Based Arts: Perspectives of People Living with Dementia

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Health & Social Care in the Community
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Abstract and Figures

For people living with dementia, participatory community-based art activities have the potential to enhance the dignity of the individual, reaffirm a sense of identity, and provide social engagement. To identify opportunities to enhance the inclusion of people living with dementia in participatory community-based arts activities, this study sought the insights of people living with dementia. People living with dementia were invited to participate in semistructured group interviews to share their insights about participatory community-based arts activities. Interviews were analysed thematically to explore perceptions of benefits, opportunities, and ways to enhance participation in such activities. Participation in community arts was perceived to deliver benefits to social engagement and potentially reduce stigma through offering an education opportunity. Three key areas were identified as ways to enhance the engagement of people with dementia: knowing about the existing opportunities, accessing the activities (in terms of transport, venue proximity, timing, and wayfinding), and receiving support while attending the activity. Adequate information, easy access, a welcoming and inclusive atmosphere, the facilitators’ enabling approach, and a judgement-free environment are desirable features which are congruent with dementia-inclusive arts activities. Enhanced engagement of people living with dementia may reduce stigma and improve community education.
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Research Article
Engaging in Participatory Community-Based Arts: Perspectives of
People Living with Dementia
Azam Bazooband , Helen Courtney-Pratt , Laura Tierney , and Kathleen Doherty
Wicking Dementia Research and Education Centre, University of Tasmania, Hobart, Australia
Correspondence should be addressed to Azam Bazooband; azam.bazooband@utas.edu.au
Received 16 December 2022; Revised 3 May 2023; Accepted 9 May 2023; Published 19 May 2023
Academic Editor: Tommaso Martino
Copyright ©2023 Azam Bazooband et al. is is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly
cited.
For people living with dementia, participatory community-based art activities have the potential to enhance the dignity of the
individual, rearm a sense of identity, and provide social engagement. To identify opportunities to enhance the inclusion of
people living with dementia in participatory community-based arts activities, this study sought the insights of people living with
dementia. People living with dementia were invited to participate in semistructured group interviews to share their insights about
participatory community-based arts activities. Interviews were analysed thematically to explore perceptions of benets, op-
portunities, and ways to enhance participation in such activities. Participation in community arts was perceived to deliver benets
to social engagement and potentially reduce stigma through oering an education opportunity. ree key areas were identied as
ways to enhance the engagement of people with dementia: knowing about the existing opportunities, accessing the activities (in
terms of transport, venue proximity, timing, and waynding), and receiving support while attending the activity. Adequate
information, easy access, a welcoming and inclusive atmosphere, the facilitators’ enabling approach, and a judgement-free
environment are desirable features which are congruent with dementia-inclusive arts activities. Enhanced engagement of people
living with dementia may reduce stigma and improve community education.
1. Background
Participatory community-based arts activities have the po-
tential to augment the dignity of the individual and rearm
a sense of identity for older people, including people who
have a diagnosis of dementia [1]. Participatory community-
based art activities are dened as those art activities or
programs taking place within the community context at
openly accessible locations, open to any community par-
ticipant, designed and delivered by artists with a goal of
active creative participation rather than a passive attendance,
but not necessarily focused on amelioration of any health
condition [2, 3]. Participatory arts aim for spontaneous
interaction and deep engagement, which promote social
interactions [1, 4], with a focus on the process of being
engaged in the art making itself [5]. Community-based art is
typically discriminated from art therapy by key character-
istics such as delivery in community, arts, and cultural
venues rather than clinical settings, facilitation by artists or
art facilitators instead of art therapists [2], and with social
engagement rather than health indicators as the primary
outcome.
Activities intended to support older people to engage
within their communities must be accessible, aordable, and
well communicated [6]. For those living with dementia, this
is more critical, as diculty accessing appropriate services is
one of the major sources of frustration and harm [7]. Even
where opportunities exist, people living with dementia may
experience diculties in participating in social activities,
given the cognitive, perceptual, and physical impairments
that may present [8]. Additional support may be required to
manage participation risks to enable and empower partic-
ipation, and foster enjoyment of activities in the wider
community [9]. People living with dementia who experience
symptoms such as withdrawal, agitation, anxiety, or im-
pulsivity may also benet from more person-centred
Hindawi
Health & Social Care in the Community
Volume 2023, Article ID 3088449, 14 pages
https://doi.org/10.1155/2023/3088449
attention. It is not only dementia and its symptoms that
potentially impact on an individual’s self-esteem, con-
dence, and willingness to engage in community settings, but
also the attitudes and understanding of dementia in those
with whom they interact [10, 11]. Dementia stigma [12]
might lead participants with dementia (and their carers) to
feel unwelcome [13], embarrassed, frustrated, or aggrieved,
leading them to avoid activities which exacerbate these
feelings [14]. Community-based arts activities have the
potential to empower people to rely on what they can do and
learn, as opposed to the abilities they are lacking or
struggling with as a result of dementia [15] and to challenge
this stigma. Little attention to date has been applied to the
uptake and suitability of community-based art for the
purpose of social engagement among people living with
dementia.
To build participatory community-based arts experi-
ences, which better meet the needs of people living with
dementia, the opinions and perceptions of people living with
dementia should be sought. is study explored participa-
tory community-based arts activities and the engagement of
people living with dementia with particular focus on barriers
and enablers to engaging in such activities. If participatory
community-based arts activities are to oer a benet in the
long-term to people living with dementia, then the emphasis
should be placed on the perspectives of people living with the
condition as key stakeholders [16].
2. Methods
2.1. Methodological Approach. e design and delivery of
appropriate care and services should incorporate users’
perspectives and insights [17]. People living with dementia
were interviewed to share their experiences to inform un-
derstanding [18, 19]. A qualitative thematic analysis of face-
to-face group interviews of people living with dementia was
employed to explore the perspectives of those living with
dementia towards participatory community-based arts ac-
tivities. Qualitative research methods are commonly used by
researchers to answer questions about the meaning, per-
spective, and experiences of people [20]. Generally, quali-
tative research methods have been dened as a naturalistic
and interpretive approach in which the phenomena are
explored [21]. Older people living with dementia are
amongst the most excluded group in societies [22]. Hence,
a qualitative research approach/method will provide clear
opportunities to respect the dignity of individuals, to enable
those living with dementia to contribute to research and to
share experiences, opinions, and understanding, and at the
same time, this research method reects a desire to fully
understand social issues which aect the group directly or
indirectly. In this study, the researcher sought to include
people living with dementia who could participate in con-
versations which acted to gather data in a supportive manner
from those who wished to participate. ere are key ob-
stacles to conducting qualitative dementia research, in-
cluding determining capacity to provide informed consent,
engaging in eective communication, and ensuring the
credibility of data [23, 24]. However, in this study, these
issues were addressed by following the person-centred
principles of accommodating needs, gaining consent, and
establishing a safe place for persons living with dementia to
openly share their thoughts.
2.2. Ethical Approval. Ethics approval was obtained from the
Tasmanian Human Research Ethics Committee (Social
Sciences) on 17
th
July 2017 (Ethics Reference: H0018167).
2.3. Recruitment and Consent. Since people with dementia at
dierent stages of their condition and age might have very
dierent needs and opinions [25], a convenience sample of
older people with dementia and people with Younger Onset
Dementia (YOD) were recruited from three established
support groups which usually meet weekly (supported by
a peak dementia body with whom the research group had an
established relationship). e intention of these local sup-
port groups for older people living with dementia is to
provide a safe and supportive environment where in-
dividuals can connect socially with others who are going
through similar experiences. ese groups can help people
living with dementia to maintain social connections, reduce
isolation, and improve their overall well-being. e services
are provided free of charge and funded through a range of
sources, including government grants, donations, and
fundraising eorts.
For the purposes of this study, a formal diagnosis of
dementia was not sought from participants. Rather, par-
ticipants were recruited from established dementia support
groups and self-reported their diagnosis of dementia. It
should be noted that the study did not aim to conrm the
diagnosis of dementia through medical records or other
diagnostic tests, nor did it seek further information about
their clinical status. Instead, the focus of the study was to
explore the experiences and perceptions of individuals who
are members of dementia support groups, where mem-
bership is voluntary for people with a diagnosis of dementia.
is allowed for a valuable exploration of the perspectives of
individuals living with dementia who are actively involved in
support groups. Members of the Younger Onset Dementia
support group were people who had received a diagnosis of
dementia under the age of 65.
All participants were able to consent verbally and par-
ticipate in the conversation. Prior to the interview, the rst
author (a PhD candidate) accompanied by a second author
attended the support groups to meet potential participants
and to provide them with an opportunity to become ade-
quately informed about the research study, ask questions,
and become accustomed to the researchers. A familiar
support worker was available to address participants’ needs
and to assist the researcher with building rapport. e in-
tention and content of the research were discussed by the
researchers with the participants both prior to interview and
in the interview session. Persons with dementia were pre-
sumed to have the capacity to consent, unless established
otherwise [26]. e participants gave informed consent in
both oral and written form before the interview, and
a process consent approach was followed in which the
2Health & Social Care in the Community
participants were reminded of their right to withdraw or
temporarily halt the interview at any time, and they were
oered the opportunity to receive support from their pre-
ferred carer if they wished.
2.4. Participants. ree participants were from the women’s
group (mean age 75.8), six from the men’s group (mean age
73.6), and three from the YOD group (mean age 59.3). e
participants of this study were invited from the established
dementia support groups in the general community. Re-
cruitment was open to anyone who expressed interest and
had the ability to provide informed consent. No selection
criteria were applied other than the requirement for consent.
All eligible individuals who expressed interest in partici-
pating were included in the study.
2.5. Data Collection
2.5.1. Interviews. e initial intent of the researchers was to
conduct individual interviews; however, potential partici-
pants indicated a preference to undertake group interviews
to enable support to be provided by their group peers. All
sessions were held at the regular group meeting location with
a familiar support worker present with the participants’
consent. Reecting on the ethical requirement of respect for
participants, the interviews were exible, recognising that
rescheduling or discontinuing the session might be required
if the participants were tired, or identied they needed
a break. Interviews were recorded with the consent of the
participants and notes were taken to provide context for the
researcher during analysis. Interviews were guided by an
open-ended interview schedule (Appendix A).
e interview schedule was developed based on the
research questions and included a series of exible open-
ended questions to allow for follow-up questions and dis-
cussion. Feedback was sought from experienced colleagues
on the wording, clarity, and relevance of the questions, and
revisions were made where required. Interviews took an
average of 45 minutes. e recordings were transcribed
verbatim by one author, and transcripts were independently
audited by a second author for accuracy. Transcripts were
not returned to participants.
2.6. Data Analysis. ematic analysis was used to identify,
analyse, and report themes informed by the inductive ap-
proach of Braun and Clarke [27]. Following familiarisation
with the transcripts, initial themes were identied using
a coding-recoding strategy [28]. ree authors separately
coded subsets of the data set and compared the results, from
which nal themes were identied. e participants’ own
words were used to illustrate the themes and subthemes. To
protect the anonymity of participants, the subthemes that
were derived from their own words were anonymized by
assigning them with labels rather than using their names or
identifying information (Younger Onset Participant (YOD),
Women’s Group Participant (WGP), and Men’s Group
Participant (MGP)). e ndings and conclusions were
critiqued collaboratively throughout the research process by
three authors to achieve a rich interpretation of the meaning.
e Consolidated Criteria for Reporting Qualitative Re-
search (COREQ) [29] checklist was used to ensure that all
details required for transparent and credible reporting of the
study were provided (Appendix B).
3. Findings
3.1. Experience of Participatory Arts. Of the three partici-
pants in the women’s group, one was currently involved in
participatory art activities through individual singing lessons
and pottery (a group activity), while the others had past
experience in drawing, singing, and painting activities. Two
of the six participants in the men’s group had no clear
connection to arts programs. e remaining participants
were involved in activities undertaken some years ago or at
school age. e three participants in the younger onset group
had past experience of attending arts activities. One was
particularly interested in the arts and reported being in-
volved in dierent creative arts. Overall, participants were
interested in being engaged in participatory community-
based arts programs in a direct way and moreover, happy to
have their opinions canvassed through the research process:
““It is great giving us the opportunity to discuss our point of
view because nobody hears what we say and my wife is the
only person who knows what I do and all my friends in
(Town name), they don’t even know who I am because I go
hide from them. (YGP1).”
During the course of the interviews key aspects of
participatory community-based arts were explored. ese
included practical suggestions on how participation might
be fostered, the potential for deeper involvement in the
design and review of arts activities and the perceived benets
of participating in community arts.
3.2. Fostering Participation. ree key themes related to
participation were as follows: navigating and accessing in-
formation about participatory community-based arts ac-
tivities; attending the opportunity itself; and being supported
when participating.
3.2.1. Navigating and Accessing Information: Knowing about
It. Being able to nd information about the availability of
programs was considered essential but challenging by
members of all groups:
““Well, if I could nd one in the community, I’d give it a go,
yeah. at’s for sure.” (WGP1).”
Almost all participants of the three groups indicated they
had limited knowledge about any current and existing arts
activities in the community:
““. . . I don’t actually know of any art groups out there that I
could approach. I wouldn’t know how to nd out if there
Health & Social Care in the Community 3
are community-based art groups out there. at is what
would stop me, simply because I wouldn’t know. (YGP2).”
Some participants could name possible information
sources such as the diary pages of the local paper, local
councils’ webpages, local council areas’ arts precincts, and
social media such as Facebook or Twitter, or search engines,
but did not use them personally. For example, one partic-
ipant commented:
““My wife says that it’s so easy, with the internet so you just
log onto the internet, and you can look up and there it is on
the browser or whatever it is called. (YGP1).”
Many participants echoed their reliance on spouses or
carers to nd information:
““I don’t use Facebook and that’s cause my wife knows
everything, so it doesn’t matter. (MGP1).”
Having access to sucient detailed information was
important as familiarity with the activity was also an in-
centive to participate. For example, one of the interviewees
said:
““Well, I’d certainly like pottery and I’ve done that before,
which makes it-if you’ve done it before, like at school or
whatever, it makes it easier to get back into it. Yeah.
(WGP1).”
3.2.2. Attending the Community Arts Opportunity: Getting
ere. Accessibility factors such as timing, location and
transport were important for participants. is was often
expressed in terms of their age or capacity:
““Age. I’m older than anybody else here, I’m almost 85 and
going out at night is a bit of a problem now so it restricts
you. (MGP3).”
Additionally, day programs were considered by some to
be essential:
““Day activity. at’s why I’m here. (MGP1).”
Having practical support to attend an opportunity was
an important consideration. One individual for example
stated that:
““. . .my husband, he does the driving and that, like to get
me places. (WGP2).”
Musing on not being able to drive anymore and relying
on others for transport, one member of the younger onset
group commented:
““I think one of the things that I would have a problem
with, is transport. . .. Because none of us can drive so we
depend on other people to get to places (YGP2).”
Navigation issues were also a concern if transport wasn’t
available:
““. . . we don’t drive anymore. We can walk, but we will get
lost; so, we don’t want to walk. (YGP1).”
e physical location and suitability of the venues was
also of importance. Suitability was associated with the
traveling distance to the venue as well as some physical
features:
““But obviously one’s physical separation from the venue is
one, how far does one have to travel? What facilities and
what services are available to bring one there etc, etc?
(MGP2).”
Self-image and perception of their own capabilities and
interests was also discussed by one of the participants as
a possible impediment to going to arts activities.
““Wouldn’t you have to overcome the barrier in your mind,
that prevents you from accepting the idea that it’s some-
thing you might be interested in doing? It really is
a question of motivation and overcoming resistance per-
haps, [resistance that might be saying] “ah well, I’m okay
the way I am, I can’t be bothered. (MGP2).”
3.2.3. Being Supported When Participating: Being ere.
When considering the experience of participation, the skills
and capacity of the facilitator of the program was important
to participants. One of the participants from the women’s
group referred to her experience in attending a dementia
specic group activity and considered the role of art facil-
itator to be an important and supportive part of the program.
““One of our ladies that I work with on the Monday group,
she’s good with the arts and everything. at’s good.
(WGP2).”
Poor prior experiences could also be an inhibitor to
attendees. One of the participants from the men’s group
reected on a negative experience of attending an arts
session within a dementia group and commented that art-
ists’/art facilitators’ prejudgment and lack of appreciation of
the individual’s creativity might act as a barrier. He
commented:
““One in particular was N’s eort which certainly had some
merit, I’m sure it did so I suggested that we should get it in
the [Art Prize]. e person who was guiding this group said,
“oh no, that’s landscapes.” I said “well what’s wrong? We
can interpret that as landscape.” “Oh no, nothing like it.”
Okay.” Prejudging. Not seeing the humour, that’s the
worst part.” (MGP2).”
Having access to the materials required for “having a go”
at a new activity without undue preparation was a positive
aspect:
4Health & Social Care in the Community
““we have got access to anything we basically want to do,
artwork or anything. e art facilitators would say “come
on, let’s go do some painting, let’s go do some drawing, let’s
go do some whatever, we can cook some food too. (YGP1).”
Being accompanied by a person who they know (a family
member or friend), was considered to be a helpful support to
remove anxiety and the pressure of being alone in the
session:
““If it was just me, I’d be wanting to have somebody else
there with me, at least for the rst time. . .. . .. well, you are
not on your own. You know, you’re not all sort of like tense
and everything. (WGP1).”
Another participant thought that modelling from others
would give her condence to attend the same activities. She
commented:
““Yeah. . . if I saw someone who was doing it and it looked
as though it was a reasonable thing to do, I wouldn’t
hesitate to say, Yeah, I’ll have a go at that. (WGP1).”
Dierent elements of the mood or atmosphere of the arts
sessions were important considerations for people with
dementia including the reaction of other attendees. Feeling
secure was one concern:
““. . . how they would respond to having someone with
dementia in their art group and how they might feel. In this
environment [YOD group], we are really safe. . . I mean, I
would love to do it, but that might be one thing that I might
need to know a little bit about, that we were actually
genuinely welcome.”(YGP2).”
One of the participants from the younger onset group
disclosed some concerns about other attendees’ (people
without dementia) feelings about having someone with
dementia in the same group. He commented:
““ey might have a dierent feeling about us, they might
feel uncomfortable having people with dementia in the
same room, I don’t know. You will get those kinds of
things.” (YGP3).”
Despite such concerns, being open about their dementia
diagnosis were considered a positive factor that may bring
benets. Others, familiar with dementia, could be a source of
assistance:
““. . . it’s nice to know that those people will give you some
help if you need it, or they will help you out if you have got
a problem.”(YGP2).”
e absence of any judgement about how people execute
their art was also considered an enabling factor by one of the
participants from the men’s group:
““. . . what people do that you might think’s crazy, or stupid,
or mad or, they’re o the planet, but to them it’s very
important. . .. So, you don’t judge anybody because they do
it for dierent reasons and that’s where the world’s gone
wrong in my view. People judge too much.” (MGP6).”
e signicance and necessity of considering and
accepting individual dierences and needs during the ac-
tivity, was important:
Sometimes, you can press the right buttons for people to get
them smiling or get them to talk get them to understand
more or learn more and all this type of stu. Some people
are either shy or they just sit in the background.” (MGP6).
3.2.4. Contributing to the Design and Review of Arts
Activities. e opportunity to extending engagement
with community arts beyond the art activity itself, by
contributing to the design or oering feedback or
evaluation of activities was also discussed. When asked
about this, participants in all three groups felt they had
much to oer, tempered by some concerns about the
commitment this would involve.
All three groups expressed a willingness to be involved in
working with others to design arts activities:
““I’m quite happy to work with other people. It doesn’t
worry me in the slightest.” (WGP1).”
Although some felt less well positioned depending on
their personal perspective:
““When you get to 85, you’re not going to learn something
new; so, I would nd it very hard to participate. (MGP4).”
One participant touched on the possible opportunities to
express his creativity that participation in design might oer.
While acknowledging some changes associated with de-
mentia, he believed that dementia has had some positive
impacts on him as well, he commented:
““My wife told me that I have lost the lter; so, I don’t know
how sometimes to behave, because it runs over me, but I
think at the same time, it has given me a lot more
imagination. I can’t imagine things not working but they
always would work.” (YGP2).”
Being involved with designing art activities was deemed
by another participant as an opening to expand their
dementia-dedicated group/organisation and to demonstrate
their capabilities (as people living with YOD) to the com-
munity, and he suggested:
““If I am invited to a group, I just explain to them how our
group can participate in any outgoings to community.”
(YGP1).”
Health & Social Care in the Community 5
ere was general agreement that engagement in arts
programs by people living with dementia oered the op-
portunity to challenge misconceptions and stigma.
““. . . nobody knows what dementia is really about. What I
was saying earlier, people see the dementia name and they
think that people with dementia have got wheelchairs,
walking sticks and look us, we are doing somersaults, we are
running, we are jogging, we are jumping.” (YGP1).”
is would oer opportunities to tailor programs or
address issues and deciencies:
““e idea of having a program and then continually
revalidating the program to make sure that it is pursuing,
and serving, purposes that are still valid. . . see whether it is
capable of being adapted into something more worthwhile,
or maybe just recognise that it has run its course.
(MGP2).”
3.3. Perceptions of the Benets of Participatory Community-
Based Art. Participatory community-based arts activities
were seen by all three groups as opportunities for socialising,
interacting with other people, and sharing their skills:
““I enjoyed doing it because of socialising, and the biggest
problem that we’ve got, is we don’t meet with other people
(MGP3).”
Participation could extend beyond the art activity itself
and oer new opportunities for cognitive engagement:
““I mean, rather than attempting to create art. . . appre-
ciation activities might be something to do, that is pick up
some ideas as to why Mona Lisa’s smile is such an enig-
matic one. But just a thought. (MGP2).”
For some, engagement in arts activities oered the op-
portunity to be creative, but also to express their person-
hood, and take pride in being recognised by others for their
creativity:
““We have got people out in the community that can see
what we have done. It is out there on the billboard, or
it’s what they can have a look at, and they can nd out
and they can see what people with dementia can do.
(YGP3).”
is was seen as an opportunity to engage and educate
the community:
““Showing our work in the community so they can see what
dementia people can do, even though we are not like your
normal dementia people. (YGP1).”
e opportunity to express and explore their capabilities
outside a dementia-specic environment or group was also
welcomed:
““I guess, I would love to be a part of a wider group to
a certain extent. . . just to actually explore something that is
way out of my comfort zone right now. . . but I would love to
get out and have some fun and I guess, let that group know
that we are still people. (YGP2).”
4. Discussion
is study explored perceptions of engagement with par-
ticipatory community-based arts activities from the per-
spective of people living with dementia. Key themes were
synthesised resulting in a participant informed model
(Figure 1) to enhance inclusivity in such activities. Key el-
ements are ensuring potential participants have sucient
information and are aware of the opportunities, delivery of
the opportunities at accessible locations and appropriate
times, and that informed and respectful support was
available to enable active participation. rough eective
collaboration with people living with dementia, design could
be enhanced, delivering on outcomes of importance to both
the people living with dementia, and the wider community.
Participation is more than the quantiable performance
of an activity [30]. Outcomes can include agency, engage-
ment, purpose, meaning, satisfaction, and acquisition of
skills [31]. In addition to creativity, learning, enjoyment, and
communication for people with dementia [15], the partic-
ipants in this study saw that the benets could extend be-
yond the people living with dementia, to other attendees at
the sessions-oering opportunity for engagement, enlight-
enment, and community education.
Arts activities oer the opportunity to challenge stigma
by connecting people living with dementia with other
community groups [3], and they deliver social benets for
both older [2, 32, 33] and younger people living with
dementia [34].
e model for dementia-inclusive participatory
community-based arts comprised three key components:
knowing about it, getting there, and being there, together
with opportunities for participation in both the design and
review of activities.
“Knowing about it” or awareness of an opportunity, or
the tools to search for an opportunity, are essential rst steps
in engaging with any activity [35]. While the participants in
this study expressed an interest in attending participatory
community-based arts activities, almost all had limited or no
knowledge about how to access information about the
available opportunities and limited condence in using
social media or other approaches. Lack of access to the
information about existing services (clinical, health, or
community services) has been reported to be among the
unmet needs of people living with dementia [36, 37], and this
also applies to the arts. Previous studies indicate that people
living with dementia may be quite unsure about how to
navigate or access information despite an understanding of
the sources of information such as Facebook, Google, and
local newspapers [38]. e quality of information is equally
important. Quality is the accuracy, usability, and compre-
hensibility of the information [39, 40]. Improving both the
accessibility and quality of information on participatory
6Health & Social Care in the Community
community-based arts activities for those living with de-
mentia is an essential step to broader engagement.
“Getting there” was also a critical aspect of engagement.
Reliance on others to access social opportunities is common
for people living with dementia [41]. Ageing impacts the
transport needs of people in general [42], with at least one-
third of older people reporting unmet travel needs which are
exacerbated with a diagnosis of dementia [43]. Greater re-
liance on others for transportation and social support is
associated with an adverse eect on quality of life [44] and
can add to carer responsibilities [45], thus consideration
should be given to the location and timing of community
arts events. While walking proximity to services and facilities
has been shown to be associated with ongoing use of
community services [46], adequate seating, lighting, shelter,
and well-maintained pathways [47], navigation triggers [48],
appropriate signage, and landmarking [49] need to be
considered in developing inclusive art opportunities.
“Being there” encompasses the experience at the arts
activity itself. Suitable arts opportunities should balance
creativity and novelty with familiarity. e benets of fa-
miliarity with both the activity and people are reected in
other studies where people with dementia may be more
likely to participate when their surroundings, objects, and
activities are familiar to them [8, 50]. In a research study
[51], individuals with dementia were able to reminisce about
experiences associated with familiar songs, and the person’s
condence in their abilities was strengthened by an ability to
recall lyrics and rhythm. In another study also using
a mixture of a new and familiar music for dancers living with
Parkinson’s disease was also found helpful in making par-
ticipants feel more condent [52]. Even professional artists
attending an art activity showed a higher level of engagement
(in comparison to amateur artists) when they leveraged their
familiarity, previous knowledge, and understanding about
the activities’ content [53].
Creative expression in artistic activity has been found to
be an important way for people with dementia to express and
access emotions even when cognitive abilities are dimin-
ishing [4, 54]. e novelty and creativity of the activities may
be an incentive to participation when it contrasts with the
daily routine [1, 55]. People living with some forms of
dementia, particularly frontotemporal dementia, may also
express increased creative activity as the condition prog-
resses [56]. Participation might also be accommodated
through leveraging the inherently exible and inclusive
Outcomes
social engagement (i)
participant informed
community education
(ii)
challenging stigma (iii)
Participant
informed
dementia-
inclusive
community-
based arts
activities
Input from people living
with dementia
Knowing about it
Awareness of opportunity
navigating and accessing
the information
accessibility and quality of
information
Getting there
Access to transport,
accessibility of the activity
proximity to the venue
timing
Practical support to attend
Wayfinding
Being there
Acknowledging individual
needs
Skilled educated facillitator
Aware co-participants
Suitable materials
Being welcome
Familiarity/Novelty
Review and feedback from
people living with
dementia
Figure 1: e key elements to create dementia inclusive participatory community-based arts (from the perspective of people living with
dementia).
Health & Social Care in the Community 7
nature of arts activities to allow participants to “go with the
ow” of the activity [57] if specic needs are accommodated
[58]. Decreased participant involvement may result if in-
dividuals feel their presence is not acknowledged and their
particular needs are not heard, understood, or catered for
[59]. Better engagement may result when people’s needs
related to their capacity are met [60]. Seeking the per-
spectives of those living with dementia on what might make
activities meaningful to them, and may fulll their needs has
been shown to improve the design of activities [50], a sen-
timent with which the participants in this study concurred.
Poor self-image and social condence of people living
with dementia can lead to their social withdrawal [61, 62].
Hence, it is crucial to consider that for some people living
with dementia, participating in community-based arts might
help overcome a negative self-image. Empowerment might
occur at two levels, the individual level, and the community
level. At the individual level, perceptions of “self” could be
enhanced through acknowledging who a person has always
been in the past and who a person is now, and their current
capabilities [58]. At the community level, familiar activities
might boost self-esteem and self-perception [63]. e co-
attendance of familiar people can contribute to participants’
engagement with broader social opportunities and en-
courage their involvement in various activities in a com-
munity [64]. Being recognised is reported to facilitate a sense
of connection and a belonging [65]. As with residential aged
care, familiarity with faces and the environment may instill
a sense of home and enable adjustment to new
environments [66].
People living with dementia envisage their involvement
with participatory arts as an opportunity to build com-
munity understanding of dementia. A lack of dementia-
specic education or experience may result in providers
feeling ill-equipped to support people with dementia in their
activities [67]. Changed behaviours associated with de-
mentia may be a concern for facilitators and, in the absence
of appropriate education, may lead to misunderstanding,
exacerbate stigma [14], and lead to withdrawal from ac-
tivities [68]. Forgetting and loss of skills can perpetuate
feelings of embarrassment, shame, and guilt, leading to the
avoidance of activities [69] if not handled sensitively. In
addition to an enhanced understanding of dementia,
community-based artists may benet from acquiring skills
typically obtained through art therapy training such as in-
terpersonal sensitivity, observational skills, awareness of
group dynamics, and an ability to create psychological safety
[70], an issue raised in this study. Providing education for
artists/art facilitators in core values such as eectively
promoting the autonomy and selfhood of the participant
with dementia, incorporating person-centred core values
such as compassion and empathy might enhance the success
for all participants [71, 72].
at people living with dementia saw themselves as the
conduit of this education argues for their greater engage-
ment in the design of the programs themselves. e active
connection of individuals with dementia with others, the
experience [73] of meaningful involvement with another
person, group, or environment, can provide comfort,
wellbeing, and sense of belonging [74, 75], but the decision
whether or not to disclose a dementia diagnosis can be
fraught. For some participants disclosure of their condition
to other people attending arts activities was felt to be
benecial, but not without its risks. us, societal attention
and support are required to ensure their needs of those who
choose to disclose their diagnosis are recognised, and their
interests are protected [76]. e inclusion of people living
with dementia in the design of participatory community-
based arts oers an opportunity to address the inhibitors to
participation, identify suitable supports whilst educating the
community about dementia.
Connecting people living with dementia and their carers
to the available services in the community may require
a proactive approach to promoting programs to enable ef-
fective navigation, access, and use [77]. Social prescribing is
recently gaining support [78–80] to directly connect people,
including people living with dementia, to a dierent range of
nonmedical activities. Social prescribing can be dened as
referring service-users to a range of nonclinical community
activities [81], including exercise classes, art therapy, com-
munity groups, social services, housing support, and
befriending services [82]. Improving access to social activ-
ities and opportunities for engagement of people living with
dementia was recognised as one of the priorities for com-
munities to become dementia-friendly in Dementia Aus-
tralia’s rst national survey of people living with dementia in
2014 [83]. However, navigation, accessing, and sourcing
community services is still reported to be among the
challenges of implementing social prescribing approaches
[84], as is the lack of integration of such activities into
existing referral processes [78]. Living alone [85], problems
related to using technology-based information [86], being
among culturally and linguistically diverse groups [87], and
the stage of dementia [88] are further considerations which
might impede access to information.
e provision of locally available, community-based,
coordinated opportunities that emphasise integration and
value individuals’ endeavours, and rights, to live as well as
they possibly can [89] is the ideal. It is important that service
providers listen to the voices of those living with dementia,
to provide opportunities that are tailored [90].
4.1. Limitations. is study recruited participants from
dementia-dedicated groups hosted by a provider of de-
mentia support. Dierent strategies were employed to
promote the study and reach participants in the broader
community; however, our inability to recruit people living
with dementia from other community-based groups
revealed the insucient representation of those living with
dementia in many activities in the community. In deference
to participant requests, we undertook the interviews as
group interviews raising the risk of having dominant in-
dividuals expressing their viewpoints in group discussion
and minimising the input of others. Every attempt was made
to manage dominant voices in group interviews through
addressing individuals while asking questions and opening
the opportunity for their contribution. Although the fact
8Health & Social Care in the Community
Table 1: Consolidated criteria for reporting qualitative research) checklist.
Topic Item no. Guide questions/Description Reported on page no.
Domain 1: Research team and reexivity
Personal characteristics
Interviewer/facilitator 1 Which author/s conducted the interview or focus group? 6
Credentials 2 What were the researcher’s credentials? e.g. PhD and MD 6
Occupation 3 What was their occupation at the time of the study? NA
Gender 4 Was the researcher male or female? NA
Experience and training 5 What experience or training did the researcher have? NA
Relationship with participants
Relationship established 6 Was a relationship established prior to study commencement? 6
Participant knowledge of the interviewer 7 What did the participants know about the researcher? e.g. personal goals, reasons
for doing the research 6
Interviewer characteristics 8 What characteristics were reported about the interviewer/facilitator? e.g. bias,
assumptions, reasons, and interests in the research topic 6
Domain 2: Study design
eoretical framework
Methodological orientation and theory 9 What methodological orientation was stated to underpin the study? e.g. grounded
theory, discourse analysis, ethnography, phenomenology, and content analysis 8
Participant selection
Sampling 10 How were participants selected? e.g. purposive, convenience, consecutive, and
snowball 7
Method of approach 11 How were participants approached? e.g. face-to-face, telephone, mail, and e-mail 7
Sample size 12 How many participants were in the study? 7
Nonparticipation 13 How many people refused to participate or dropped out? Reasons? NA
Setting
Setting of data collection 14 Where was the data collected? e.g. home, clinic, and workplace 7
Presence of nonparticipants 15 Was anyone else present besides the participants and researchers? 7
Description of sample 16 What are the important characteristics of the sample? e.g. demographic data and
date 7
Data collection
Interview guide 17 Were questions, prompts, and guides provided by the authors? Was it pilot tested? 8
Repeat interviews 18 Were repeats interviews carried out? If yes, how many? NA
Audio/visual recording 19 Did the research use audio or visual recording to collect the data? 8
Field notes 20 Were eld notes made during and/or after the interview or focus group? 7
Duration 21 What was the duration of the interviews or focus group? 8
Data saturation 22 Was data saturation discussed? NA
Transcripts returned 23 Were transcripts returned to participants for comment and/or correction? NA
Domain 3: analysis and ndings
Data analysis
Number of data coders 24 How many data coders coded the data? 8
Description of the coding tree 25 Did authors provide a description of the coding tree? 8
Derivation of themes 26 Were themes identied in advance or derived from the data? 8
Software 27 What software, if applicable, was used to manage the data? NA
Participant checking 28 Did participants provide feedback on the ndings? NA
Reporting
Health & Social Care in the Community 9
Table 1: Continued.
Topic Item no. Guide questions/Description Reported on page no.
Quotations presented 29 Were participant quotations presented to illustrate the themes/ndings? 9–19
Was each quotation identied? e.g. participant number
Data and ndings consistent 30 Was there consistency between the data presented and the ndings? Y
Clarity of major themes 31 Were major themes clearly presented in the ndings? 9–19
Clarity of minor themes 32 Is there a description of diverse cases or discussion of minor themes? 9–19
10 Health & Social Care in the Community
that participants of each group knew each other from
regularly attending the same groups was helpful from some
aspects, their reliance on the minority of group participants
to answering questions may have limited the capture of the
viewpoints of the quieter participants.
e most important limitation lies in the fact that only
one of the participants interviewed in this study had current
experience of participatory community-based arts activities.
Undoubtedly, it would have been benecial to additionally
recruit a group of people living with dementia who were
currently participating in participatory community-based
arts, particularly to explore facilitators. Exploring their
lived experiences as well as their viewpoints about the el-
ements which might support or act as a barrier in accessing
information, accessing the activity, and being involved in the
activity could expose solutions to some of the access issues
raised.
Analysing the data from the rst interview before pro-
ceeding with collecting data from other groups might have
provided additional avenues of exploration. is could have
provided the researcher with an opportunity to learn from
the rst interview and to apply the learned lessons to the rest
of the interviews in order to obtain more in-depth data about
specic areas of interest. Despite this, the ndings from the
dierent groups were rich and informative and important
dierences and similarities emerged. We knew little about
the cognitive status of individuals, or the staging of de-
mentia. is might also be considered among the limitations
of this phase of the study, but the aim of this research was to
capture the insights from those living with dementia who are
presently living within the community irrespective of the
stage of their condition, and all participants met this cri-
terion. Understanding more about their present living ar-
rangements, activities, and interests, however, might have
provided further context for their responses.
5. Conclusions
is study shed light on the desirable features which are
congruent with dementia-inclusive participatory
community-based arts activities including adequate in-
formation, easy access, a welcoming and inclusive atmo-
sphere, the facilitators’ enabling approach, and a judgement-
free environment. Participatory community-based arts
should celebrate being “in the moment” and remove any
emphasis on correctness or accuracy [3], instead allowing
participants to freely use their imaginations to reconnect.
Engaging in artistic activities has the potential to benet all
individuals involved and may oer a novel approach to
delivering dementia education that directly involves people
with dementia.
Appendix
A. Semistructured Interview Sample Questions
People living with dementia
(i) In your own words could you please tell me why
you are interested in this study?
(ii) Can you tell me about what helps you become
engaged in participatory community-based arts?
(iii) Can you tell me about what stops you from being
engaged in participatory community-based arts?
(iv) What types of arts activities would you like to have
access to?
(v) Have you even given feedback or helped in de-
signing/delivering participatory community-based
arts activities?
(vi) Would you like to participate in designing/de-
livering participatory community-based arts
activities?
B. (Consolidated Criteria for Reporting
Qualitative Research) Checklist
A checklist of items that should be included in reports of
qualitative research. You must report the page number in
your manuscript where you consider each of the items listed
in this checklist. If you have not included this information,
either revise your manuscript accordingly before submitting
or note N/A (see Table 1).
Data Availability
e data and materials that support the ndings of this study
are made available from the corresponding author upon
request.
Additional Points
As a result of stigma, people living with dementia may
become isolated, marginalised, and excluded from the
community. Social inclusion through community engage-
ment can improve feelings of connection for people living
with dementia. Participatory community-based arts activi-
ties oer an opportunity for social inclusion of people living
with dementia. We provide a model for design of dementia-
inclusive participatory community-based arts activities in-
formed by people living with dementia. Information about
the activity reaches people living with dementia and their
caregivers, family, or friends. e activities are accessible to
people living with dementia. People living with dementia are
supported by an informed artist, in a judgment-free and
socially safe environment.
Ethical Approval
is research was conducted as part of a PhD project at the
University of Tasmania and Wicking Dementia Research
and Education Centre 17 Liverpool Street, Hobart TAS 7001.
Disclosure
is research was part of a PhD project supported by the
University of Tasmania Graduate Research Scholarship.
Open access publishing is facilitated by the University of
Tasmania, as part of the Wiley-University of Tasmania
agreement via the Council of Australian University
Librarians.
Health & Social Care in the Community 11
Conflicts of Interest
e authors declare that there are no conicts of interest.
Acknowledgments
e authors would like to thank the University of Tasmania
and Wicking Dementia Research and Education Centre for
funding to support this review, which was part of a PhD
project. e authors are very grateful to all participants of
this research, who generously shared their time, experience,
and perspectives for the purposes of this study.
References
[1] L. D. Burnside, M. J. Knecht, E. K. Hopley, and R. G. Logsdon,
“here: now–Conceptual model of the impact of an experiential
arts program on persons with dementia and their care
partners,” Dementia, vol. 16, no. 1, pp. 29–45, 2017.
[2] R. Young, P. M. Camic, and V. Tischler, “e impact of
community-based arts and health interventions on cognition
in people with dementia: a systematic literature review,” Aging
& Mental Health, vol. 20, no. 4, pp. 337–351, 2016.
[3] M. C. Ward, C. Milligan, E. Rose, M. Elliott, and
B. R. Wainwright, “e benets of community-based par-
ticipatory arts activities for people living with dementia:
a thematic scoping review,” Arts & Health, vol. 13, no. 3,
pp. 213–239, 2021.
[4] H. Zeilig, J. Killick, and C. Fox, “e participative arts for
people living with a dementia: a critical review,” International
Journal of Ageing and Later Life, vol. 9, no. 1, pp. 7–34, 2014.
[5] A. Dix and T. Gregory, Adult Participatory Arts: inking it
through, Arts Council England, Manchester,
United Kingdom, 2010.
[6] D. R. Y. Gan, H. Chaudhury, J. Mann, and A. V. Wister,
“Dementia-friendly neighbourhood and the built environ-
ment: a scoping review,” e Gerontologist, vol. 62, 2021.
[7] C. Morrisby, M. Ciccarelli, and A. Joosten, “Mind the gap:
comparing perspectives of service providers to the needs of
people with dementia living in the community,” Dementia,
vol. 20, Article ID 1471301220947837, 2020.
[8] A. Phinney, H. Chaudhury, and D. L. O’connor, “Doing as
much as I can do: the meaning of activity for people with
dementia,” Aging & Mental Health, vol. 11, no. 4, pp. 384–393,
2007.
[9] M. A. Trahan, J. Kuo, M. C. Carlson, and L. N. Gitlin, “A
systematic review of strategies to foster activity engagement in
persons with dementia,” Health Education & Behavior, vol. 41,
no. 1_suppl, pp. 70S–83S, 2014.
[10] C. Cantley and A. Bowes, “Dementia and social inclusion: the
way forward,” in Dementia and Social Inclusion, A. Innes,
C. Archibald, and C. Murphy, Eds., pp. 255–271, Jessica
Kingsley, London, United Kingdom, 2004.
[11] K. Smith, S. Gee, T. Sharrock, and M. Croucher, “Developing
a dementia-friendly C hristchurch: perspectives of people
with dementia,” Australasian Journal on Ageing, vol. 35, no. 3,
pp. 188–192, 2016.
[12] A. Innes, S. J. Page, and C. Cutler, “Barriers to leisure par-
ticipation for people with dementia and their carers: an ex-
ploratory analysis of carer and people with dementia’s
experiences,” Dementia, vol. 15, no. 6, pp. 1643–1665, 2016.
[13] J. Connell, S. J. Page, I. Sheri, and J. Hibbert, “Business
engagement in a civil society: transitioning towards
a dementia-friendly visitor economy,” Tourism Management,
vol. 61, pp. 110–128, 2017.
[14] O. Timmermans, I. van de Velde, and M. Matthijsse, Per-
ception of People Living with Dementia and Entrepreneurs on
Dementia-Friendly Leisure Activities in Society, Journal of
Sociology, vol 4, pp 130–149, 2020.
[15] A. M. Ull´
an, M. H. Belver, M. Bad´
ıa et al., “Contributions of
an artistic educational program for older people with early
dementia: an exploratory qualitative study,” Dementia, vol. 12,
no. 4, pp. 425–446, 2013.
[16] A. J. Harding, H. Morbey, F. Ahmed et al., “What is important
to people living with dementia?: the ‘long-list’of outcome
items in the development of a core outcome set for use in the
evaluation of non-pharmacological community-based health
and social care interventions,” BMC Geriatrics, vol. 19, no. 1,
pp. 94–12, 2019.
[17] N. M. Ries, K. A. ompson, and M. Lowe, “Including people
with dementia in research: an analysis of Australian ethical
and legal rules and recommendations for reform,” Journal of
Bioethical Inquiry, vol. 14, no. 3, pp. 359–374, 2017.
[18] J. Brooks, N. Savitch, and K. Gridley, “Removing the’gag’:
involving people with dementia in research as advisers and
participants,” Social Research Practice, pp. 3–14, 2017.
[19] M. von Kutzleben, W. Schmid, M. Halek, B. Holle, and
S. Bartholomeyczik, “Community-dwelling persons with
dementia: what do they need? What do they demand? What
do they do? A systematic review on the subjective experiences
of persons with dementia,” Aging & Mental Health, vol. 16,
no. 3, pp. 378–390, 2012.
[20] R. K. Yin, Case Study Research and Applications, Sage,
ousand Oaks, CF, USA, 2018.
[21] U. Flick, e SAGE Qualitative Research Kit, SAGE Publi-
cations Limited, ousand Oaks, CF, USA, 2018.
[22] K. Walsh, T. Scharf, and N. Keating, “Social exclusion of older
persons: a scoping review and conceptual framework,” Eu-
ropean Journal of Ageing, vol. 14, no. 1, pp. 81–98, 2017.
[23] L. Beuscher and V. T. Grando, “Challenges in conducting
qualitative research with individuals with dementia,” Research
in Gerontological Nursing, vol. 2, no. 1, pp. 6–11, 2009.
[24] J. Carmody, V. Traynor, and E. Marchetti, “Barriers to
qualitative dementia research: the elephant in the room,”
Qualitative Health Research, vol. 25, no. 7, pp. 1013–1019,
2015.
[25] C. Brayne and D. Davis, “Making Alzheimer’s and dementia
research t for populations,” e Lancet, vol. 380, no. 9851,
pp. 1441–1443, 2012.
[26] A. orogood, A. M¨
aki-Pet¨
aj¨
a-Leinonen, H. Brodaty et al.,
“Consent recommendations for research and international
data sharing involving persons with dementia,” Alzheimer’s
and Dementia, vol. 14, no. 10, pp. 1334–1343, 2018.
[27] V. Braun and V. Clarke, “Using thematic analysis in psy-
chology,” Qualitative Research in Psychology, vol. 3, no. 2,
pp. 77–101, 2006.
[28] Y. Lincoln and E. Guba, Establishing trustworthiness. Natu-
ralistic inquiry, vol. 289, no. 331, pp. 289–327, 1985.
[29] A. Tong, P. Sainsbury, and J. Craig, “Consolidated criteria for
reporting qualitative research (COREQ): a 32-item checklist
for interviews and focus groups,” International Journal for
Quality in Health Care, vol. 19, no. 6, pp. 349–357, 2007.
[30] K. A. Martin Ginis, M. B. Evans, W. B. Mortenson, and
L. Noreau, “Broadening the conceptualization of participation
of persons with physical disabilities: a congurative review
and recommendations,” Archives of Physical Medicine and
Rehabilitation, vol. 98, no. 2, pp. 395–402, 2017.
12 Health & Social Care in the Community
[31] I. Margot-Cattin, N. uhne, A. ¨
Ohman, A. Brorsson, and
L. Nygard, “Familiarity and participation outside home for
persons living with dementia,” Dementia, vol. 20, no. 7,
pp. 2526–2541, 2021.
[32] P. M. Camic, V. Tischler, and C. H. Pearman, “Viewing and
making art together: a multi-session art-gallery-based in-
tervention for people with dementia and their carers,” Aging
& Mental Health, vol. 18, no. 2, pp. 161–168, 2014.
[33] S. Douglas, I. James, and C. Ballard, “Non-pharmacological
interventions in dementia,” Advances in Psychiatric Treat-
ment, vol. 10, no. 3, pp. 171–177, 2004.
[34] A. Mayrhofer, E. Mathie, J. McKeown, F. Bunn, and
C. Goodman, “Age-appropriate services for people diagnosed
with young onset dementia (YOD): a systematic review,”
Aging & Mental Health, vol. 22, no. 8, pp. 933–941, 2018.
[35] W. Jacobs, A. O. Amuta, and K. C. Jeon, “Health information
seeking in the digital age: an analysis of health information
seeking behavior among US adults,” Cogent Social Sciences,
vol. 3, no. 1, Article ID 1302785, 2017.
[36] C. Bakker, Young Onset Dementia: Care Needs & Service
Provision, [Sl: sn], Massachusetts, United Kingdom, 2013.
[37] J. Sansoni, C. Duncan, P. Grootemaat, J. Capell, P. Samsa, and
A. Westera, “Younger onset dementia: a review of the liter-
ature to inform service development,” American Journal of
Alzheimer’s Disease and Other Dementias, vol. 31, no. 8,
pp. 693–705, 2016.
[38] F. Allen, R. Cain, and C. Meyer, “Seeking relational in-
formation sources in the digital age: a study into information
source preferences amongst family and friends of those with
dementia,” Dementia, vol. 19, no. 3, pp. 766–785, 2020.
[39] L. Lu and Y. C. Yuan, “Shall I Google it or ask the competent
villain down the hall? e moderating role of information
need in information source selection,” Journal of the Amer-
ican Society for Information Science and Technology, vol. 62,
no. 1, pp. 133–145, 2011.
[40] J. C. Zimmer, R. M. Henry, and B. S. Butler, “Determinants of
the use of relational and nonrelational information sources,”
Journal of Management Information Systems, vol. 24, no. 3,
pp. 297–331, 2007.
[41] L. Birt, R. Griths, G. Charlesworth et al., “Maintaining social
connections in dementia: a qualitative synthesis,” Qualitative
Health Research, vol. 30, no. 1, pp. 23–42, 2020.
[42] C. Luiu, M. Tight, and M. Burrow, “e unmet travel needs of
the older population: a review of the literature,” Transport
Reviews, vol. 37, no. 4, pp. 488–506, 2017.
[43] A. Holden and H. Pusey, “e impact of driving cessation for
people with dementia–An integrative review,” Dementia,
vol. 20, no. 3, pp. 1105–1123, 2021.
[44] A. M. Byszewski, F. J. Molnar, and F. Aminzadeh, “e impact
of disclosure of untness to drive in persons with newly
diagnosed dementia: patient and caregiver perspectives,”
Clinical Gerontologist, vol. 33, no. 2, pp. 152–163, 2010.
[45] S. Sanford, M. J. Rapoport, H. Tuokko et al., “Independence,
loss, and social identity: perspectives on driving cessation and
dementia,” Dementia, vol. 18, no. 7-8, pp. 2906–2924, 2019.
[46] D. Y. Carstens, Site Planning and Design for the Elderly: Issues,
Guidelines, and Alternatives, John Wiley & Sons, Hoboken,
NJ, USA, 1993.
[47] L. Mitchell, E. Burton, S. Raman, T. Blackman, M. Jenks, and
K. Williams, “Making the outside world dementia-friendly:
design issues and considerations,” Environment and Planning
B: Planning and Design, vol. 30, no. 4, pp. 605–632, 2003.
[48] S. Teipel, C. Babiloni, J. Hoey, J. Kaye, T. Kirste, and
O. K. Burmeister, “Information and communication
technology solutions for outdoor navigation in dementia,”
Alzheimer’s and Dementia, vol. 12, no. 6, pp. 695–707, 2016.
[49] B. Sheehan, E. Burton, and L. Mitchell, “Outdoor waynding
in dementia,” Dementia, vol. 5, no. 2, pp. 271–281, 2006.
[50] A. Han, J. Radel, J. M. McDowd, and D. Sabata, “Perspectives
of people with dementia about meaningful activities: a syn-
thesis,” American Journal of Alzheimer’s Disease and Other
Dementias, vol. 31, no. 2, pp. 115–123, 2016.
[51] L. McCabe, C. Greasley-Adams, and K. Goodson, “‘What I
want to do is get half a dozen of them and go and see Simon
Cowell’: reecting on participation and outcomes for people
with dementia taking part in a creative musical project,”
Dementia, vol. 14, no. 6, pp. 734–750, 2015.
[52] J. Brook and A. Booth, “May I have this dance: examining
a community based dance program for people living with
Parkinson’s disease,” Research in Dance Education, vol. 23,
no. 4, pp. 470–484, 2022.
[53] C. R. Davies, M. Rosenberg, M. Knuiman, R. Ferguson,
T. Pikora, and N. Slatter, “Dening arts engagement for
population-based health research: art forms, activities and
level of engagement,” Arts & Health, vol. 4, no. 3, pp. 203–216,
2012.
[54] J. McLean, An Evidence Review of the Impact of Participatory
Arts on Older People, Mental Health Foundation, London,
United Kingdom, 2011.
[55] M. H. Belver, A. M. Ull´an, N. Avila, C. Moreno, and
C. Hern´
andez, “Art museums as a source of well-being for
people with dementia: an experience in the Prado Museum,”
Arts & Health, vol. 10, no. 3, pp. 1–14, 2017.
[56] F. Geser, K. A. Jellinger, L. Fellner, G. K. Wenning,
D. Yilmazer-Hanke, and J. Haybaeck, “Emergent creativity in
frontotemporal dementia,” Journal of Neural Transmission,
vol. 128, no. 3, pp. 279–293, 2021.
[57] R. Motta-Ochoa, A. Leibing, and P. Bresba, “You’re part of us
and we’re happy to have you here”: practices of social in-
clusion for persons with dementia,” Clinical Gerontologist,
vol. 44, pp. 1–12, 2021.
[58] C. T. van Corven, A. Bielderman, M. Wijnen et al., “Dening
empowerment for older people living with dementia from
multiple perspectives: a qualitative study,” International
Journal of Nursing Studies, vol. 114, Article ID 103823, 2021.
[59] T. Morton, Sustaining Community Groups and Activities for
People Aected by Dementia: Recommendations from the
SCI-Dem Project for Commissioners and Policy-Makers,
University of Worcester, Worcester, United Kingdom, 2021.
[60] S. Gregor, J. Vaughan-Graham, A. Wallace, H. Walsh, and
K. K. Patterson, “Structuring community-based adapted
dance programs for persons post-stroke: a qualitative study,”
Disability & Rehabilitation, vol. 43, no. 18, pp. 2621–2631,
2020.
[61] Alzheimer’s society, Understanding and Supporting a Person
with Dementia, 2019,https://www.alzheimers.org.uk/get-
support/help-dementia-care/understanding-supporting-per
son-dementia.
[62] T. M. Kitwood, Dementia Reconsidered: e Person Comes
First, Open university press, Maidenhead, Berkshire,
United Kingdom, 1997.
[63] M. Nomura, K. Makimoto, M. Kato et al., “Empowering older
people with early dementia and family caregivers: a partici-
patory action research study,” International Journal of
Nursing Studies, vol. 46, no. 4, pp. 431–441, 2009.
[64] A. Clark, S. Campbell, J. Keady et al., “Neighbourhoods as
relational places for people living with dementia,” Social
Science & Medicine, vol. 252, Article ID 112927, 2020.
Health & Social Care in the Community 13
[65] D. Morgan, Acquaintances: e Space between Intimates and
Strangers: e Space between Intimates and Strangers,
McGraw-Hill Education, New York, NY, USA, 2009.
[66] S. L. Canham, L. Battersby, M. L. Fang, J. Sixsmith,
R. Woolrych, and A. Sixsmith, “From familiar faces to family:
sta and resident relationships in long-term care,” Journal of
Aging and Health, vol. 29, no. 5, pp. 842–857, 2017.
[67] R. Lawthom, J. Sixsmith, and C. Kagan, “Interrogating power:
the case of arts and mental health in community projects,”
Journal of Community & Applied Social Psychology, vol. 17,
no. 4, pp. 268–279, 2007.
[68] E. Lishman, R. Cheston, and J. Smithson, “e paradox of
dementia: changes in assimilation after receiving a diagnosis
of dementia,” Dementia, vol. 15, no. 2, pp. 181–203, 2016.
[69] M. R. Genoe and S. L. Dupuis, “e role of leisure within the
dementia context,” Dementia, vol. 13, no. 1, pp. 33–58, 2014.
[70] C. H. Moon and V. Shuman, “e community art studio,”
Using Art erapy with Diverse Populations: Crossing Cultures
and Abilities, pp. 297–307, 2013.
[71] P. E. Sauer, J. Fopma-Loy, J. M. Kinney, and E. Lokon, It
makes me feel like myself”: person-centered versus traditional
visual arts activities for people with dementia,” Dementia,
vol. 15, no. 5, pp. 895–912, 2016.
[72] E. K. Shoesmith, D. Charura, and C. Surr, “What are the
elements needed to create an eective visual art intervention
for people with dementia? a qualitative exploration,” De-
mentia, vol. 20, Article ID 1471301220938481, 2020.
[73] M. D. O’Sullivan, K. Bryant, and H. Hewett, “Unlearning
introductions: problematizing Pedagogies of inclusion, di-
versity, and Experience in the Gender and women’s studies
introductory course. Atlantis: critical studies in gender,”
Culture & Social Justice, vol. 37, no. 2, pp. 22–33, 2016.
[74] A. Taket, eorising Social Exclusion, Routledge, Oxfordshire,
England, UK, 2009.
[75] K. C. Townsend, B. T. McWhirter, and Connectedness,
“Connectedness: a review of the literature with implications
for counseling, assessment, and research,” Journal of Coun-
seling and Development, vol. 83, no. 2, pp. 191–201, 2005.
[76] T. Mattsson and L. Giertz, “Vulnerability, law, and dementia:
an interdisciplinary discussion of legislation and practice,”
eoretical Inquiries in Law, vol. 21, no. 1, pp. 139–159, 2020.
[77] H. Brodaty, C. omson, C. ompson, and M. Fine, “Why
caregivers of people with dementia and memory loss don’t use
services,” International Journal of Geriatric Psychiatry, vol. 20,
no. 6, pp. 537–546, 2005.
[78] K. Baker and A. Irving, “Co-producing approaches to the
management of dementia through social prescribing,” Social
Policy and Administration, vol. 50, no. 3, pp. 379–397, 2016.
[79] C. Drinkwater, J. Wildman, and S. Moatt, “Social pre-
scribing,” BMJ, vol. 364, p. l1285, 2019.
[80] S. A. Schroeder, “We can do better—improving the health of
the American people,” New England Journal of Medicine,
vol. 357, no. 12, pp. 1221–1228, 2007.
[81] J. South, T. J. Higgins, J. Woodall, and S. M. White, “Can
social prescribing provide the missing link?” Primary Health
Care Research & Development, vol. 9, no. 04, pp. 310–318,
2008.
[82] H. J. Chatterjee, P. M. Camic, B. Lockyer, and
L. J. M. omson, “Non-clinical community interventions:
a systematised review of social prescribing schemes,” Arts &
Health, vol. 10, no. 2, pp. 97–123, 2018.
[83] Alzheimer Australia, Living with Dementia in the Community;
Challenges & Opportunities, 2014.
[84] J. M. Wildman, S. Moatt, M. Steer, K. Laing, L. Penn, and
N. O’Brien, “Service-users’ perspectives of link worker social
prescribing: a qualitative follow-up study,” BMC Public
Health, vol. 19, no. 1, pp. 98–12, 2019.
[85] L. De Witt and J. Ploeg, “Caring for older people living alone
with dementia: healthcare professionals’ experiences,” De-
mentia, vol. 15, no. 2, pp. 221–238, 2016.
[86] L. Nyg˚ard and S. Starkhammar, “e use of everyday tech-
nology by people with dementia living alone: mapping out the
diculties,” Aging & Mental Health, vol. 11, no. 2, pp. 144–
155, 2007.
[87] D. Boughtwood, C. Shanley, J. Adams et al., “Dementia in-
formation for culturally and linguistically diverse commu-
nities: sources, access and considerations for eective
practice,” Australian Journal of Primary Health, vol. 18, no. 3,
pp. 190–196, 2012.
[88] A. Soong, S. T. Au, B. M. Kyaw, Y. L. eng, and L. Tudor Car,
“Information needs and information seeking behaviour of
people with dementia and their non-professional caregivers:
a scoping review,” BMC Geriatrics, vol. 20, no. 1, pp. 61–17,
2020.
[89] S. Buckner, N. Darlington, M. Woodward et al., “Dementia
friendly communities in England: a scoping study,” In-
ternational Journal of Geriatric Psychiatry, vol. 34, no. 8,
pp. 1235–1243, 2019.
[90] C. Morrisby, A. Joosten, and M. Ciccarelli, “Do services meet
the needs of people with dementia and carers living in the
community? A scoping review of the international literature,”
International Psychogeriatrics, vol. 30, no. 1, pp. 5–14, 2018.
14 Health & Social Care in the Community
... People attending weekly music activities in community centres, for example, attributed improvements in quality of life to active engagement with music and reported a wide additional beneft. For people living with dementia, participatory community-based art activities have the potential to enhance the dignity of the individual, reafrm a sense of identity, and provide social engagement [13]. However, for those delivering participatory art activities in the community, the inclusion of people living with dementia may be perceived as a challenge and on some occasions, they may be actively excluded [13]. ...
... For people living with dementia, participatory community-based art activities have the potential to enhance the dignity of the individual, reafrm a sense of identity, and provide social engagement [13]. However, for those delivering participatory art activities in the community, the inclusion of people living with dementia may be perceived as a challenge and on some occasions, they may be actively excluded [13]. ...
... Tis study forms an integral part of a doctoral thesis that explored the inclusivity of communitybased art activities for individuals living with dementia [22]. Te investigation considered the perspectives of both individuals living with dementia [13] as well as the art collaborators. In addition, it involved an examination of the evaluation of participatory community-based art programs suitable for individuals with dementia [23], in addition to an exploration of the online information-seeking behaviour and communication of art activities on the websites of 29 councils in Tasmania. ...
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Community-based arts have the potential to offer multiple benefits to people living with dementia; however, the level of uptake of these activities is unclear. This study sought to examine the perspectives of key stakeholders: the presenting artists and those who are responsible for planning art activities within the context of community to examine opportunities for and barriers to participation of people living with dementia in community-based art activities. Inductive thematic analysis approach of Braun and Clarke (2006) was applied to identify, analyse, and report themes from the semistructured interviews with artists and art planners. Important factors to be taken into account when delivering community-based art activities inclusive of people living with dementia arose under three major themes: perceptions and knowledge of dementia, the inherently inclusive qualities of arts, and practical approaches to delivery of the activity. Both artists and art planners felt that understanding motivations and expectations, effective communication, access, and support for both themselves and people with dementia were crucial factors to create and deliver dementia inclusive arts in the context of community. Both artists and art planners believed that community-based art activities can be inclusive of people living with dementia. Changes in design, delivery mode, communication, and access to the activities might empower this group of people to take part in such activities in the community.
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Numerous papers report on connections between creative work and dementing illness, particularly in frontotemporal dementia (FTD), which may combine with motor neuron disease (FTD-MND). However, the emergence of FTD(-MND) patients' de novo artistic activities is rarely reported and underappreciated. Therefore, the present review summarizes relevant case studies' outcomes, capturing creativity's multifaceted nature. Here, we systematically searched for case reports by paying particular attention to the chronological development of individual patients' clinical symptoms, signs, and life events. We synoptically compared the various art domains to the pattern of brain atrophy, the clinical and pathological FTD subtypes. 22 FTD(-MND) patients were identified with creativity occurring either at the same time (41%) or starting after the disease onset (59%); the median lag between the first manifestation of disease and the beginning of creativity was two years. In another five patients, novel artistic activity was developed by a median of 8 years before the start of dementia symptoms. Artistic activity usually evolved over time with a peak in performance, followed by a decline that was further hampered by physical impairment during disease progression. Early on, the themes and objects depicted were often concrete and realistic, but they could become more abstract or symbolic at later stages. Emergent artistic processes may occur early on in the disease process. They appear to be a communication of inner life and may also reflect an attempt of compensation or "self-healing". The relative preservation of primary neocortical areas such as the visual, auditory, or motor cortex may enable the development of artistic activity in the face of degeneration of association cortical areas and subcortical, deeper central nervous system structures. It is crucial to understand the differential loss of function and an individual's creative abilities to implement caregiver-guided, personalized therapeutic strategies such as art therapy. DOI: 10.1007/s00702-021-02325-z PMID: 33709181
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Background and objectives: The concept of empowerment seems promising for people living with demen-tia to live their life as they want to for as long as possible. Therefore, this study aimed to explore what the concept of empowerment means and includes for people living with dementia from the perspectives of people living with dementia themselves, their informal caregivers, and healthcare professionals. Research design and methods: Qualitative research using focus group discussions and individual interviews with people living with dementia (n = 15), informal caregivers (n = 16) and healthcare professionals (n = 46) to explore perspectives on empowerment. Audio-recordings were transcribed verbatim, and separately analyzed by two researchers using inductive thematic analysis. Results: Four themes were identified as important aspects of empowerment: (1) having a sense of personal identity, (2) having a sense of choice and control, (3) having a sense of usefulness and being needed, and (4) retaining a sense of worth. Based on these themes, a conceptual framework of empowerment for older people living with dementia was developed. Empowerment takes place within the person living with dementia, but is achieved through interaction with their environment. The four themes seem to be important both at home and in nursing homes, and in different stages of dementia. However, practical detailing of support differed. Discussion and implications: Our empowerment framework may provide a basis for developing interventions to empower people living with dementia and to strengthen (in)formal caregivers in this empower-ment process. Support for people living with dementia must be adjusted to their personal situation and individual capabilities.
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Introduction Research with West Australian people with dementia and their carers living in the community identified that they have a diverse range of needs. However, little is known about the needs of people with dementia and their carers from the perspectives of service providers who provide formal support. This study aimed to investigate the needs of people with dementia and their carers living in the community from the perspectives of service providers, and compare this to service recipients. Method This interpretive descriptive study used focus groups to collect qualitative data from service providers ( N = 10). Data were analysed using a hybrid inductive–deductive approach to compare the needs identified by service providers to those identified by people with dementia and their carers. Results Three major themes were identified: (i) services and supports required by people with dementia and their carers should be flexible, tailored, and equitable; (ii) building capacity to support carers and people with dementia; and (iii) systems designed to care were fragmented and difficult to navigate. Service providers prioritise needs that are limited to their current capacity to provide in contrast to the holistic needs of people with dementia and their carers. Conclusion There was poor alignment between the perceived needs of people with dementia and their carers and the needs prioritised by service providers in the West Australian community. This gap may reduce the ability of services to effectively support people with dementia to remain living in the community.