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Introduction

Having grandma at my place after weeks of her being with her carer, she started wandering around my child’s room and ended up picking up some old broken crayons. Together with my little girl, she started drawing random shapes on top of the desk. Those shapes seemed like aimless, odd, arbitrary forms to me, but to my grandma, in her late 80s, with dementia, it was more than that. She was trying to copy some patterns from her pants; an activity that kept her engaged for hours. Her happiness was evident on her face as she shared the creative experience with my child. But, despite her joy, this reminded me of her loneliness…

Having witnessed my grandma’s connection to creativity, as well as years of experience and a deep interest in theatre, I was drawn to a research project investigating the enablers and barriers of including people living with dementia in arts activities in the community. I was awarded a Tasmanian Graduate Research Scholarship (TGRS) from the University of Tasmania to undertake a PhD research at the Wicking Dementia Research and Education Centre to explore the enablers and barriers to inclusion of people living with dementia in community-based arts.

 

Background information

Living with dementia can contribute to social isolation and feeling lonely. The stigma associated with dementia is a major issue and may result in intentional and unintentional exclusion of people living with dementia from participating in mainstream society. This has negative implications not only for the individuals living with dementia, but society more generally. Social inclusion through community engagement can improve feelings of connection to the environment, other people and being part of their community. Being socially engaged also improves the acknowledgement that the citizenship and human rights of people living with dementia is equally as important as other members of society.

Community engagement activities need to be designed to ensure people living with dementia, their families, and carers, are supported to retain their connection to the community. Such activities can include co-creation programs, reminiscence programs, arts and crafts activities, exercise and community gardening activities, to name a few. Amongst these, there is growing evidence that community-based arts programs contribute to wellbeing of the individual and provide many social benefits.

What is community-based arts activity? How is it different from art therapy?

Community-based art activities widely include various types of arts activities such as singing, dancing, drama, painting, drawing, and are chiefly delivered in community settings, such as community hubs, councils, and arts centres, by artists or arts facilitators with no specific health education background. It is different from art therapy in that those who are involved in delivering arts activities are normally healthcare workers or professionals (mostly art therapists) working in healthcare environments like hospitals, or hospices. The chief purpose of art therapy is to use arts-based activities to address and to ameliorate specific health challenges or conditions. Where clinical outcomes are emphasised in art therapy, the goal of community-based arts activities is social engagement and participation. Considering that currently in Australia around 70% of those living with dementia are living in the community, community arts might be a useful way to foster social inclusion.

What did we do?

Together with my supervisors, Dr. Helen Courtney-Pratt and Dr. Kathleen Doherty, we carried out a comprehensive search of the literature to study the factors which might make community- based arts more dementia-inclusive and the factors which might act as a hinderance.

Building on this, we interviewed artists and art planners to gain in-depth knowledge of their perspectives on the possibilities and challenges of including people living with dementia in community-based arts activities. People living with dementia also participated in our study. In this brief article,  I just address the findings from those involved in planning and delivering the arts activities.

Who was involved?

Research participants informing this part of the study include four artists and three art planners. In this study, an individual directly delivering any sorts of arts activities to people within a community setting, was considered an artist. Art planner participants were people responsible for overseeing or designing the program content, planning (deciding about the venue, timetable, budgets, and other general aspects) and coordinating provision of art activities in a general community setting. Both groups of participants attended individual face-to-face interview sessions and generously shared their perspectives on various aspects of including people living with dementia in community arts programs.

What did we learn from interviewing artists/art planners?

Art has social outcomes.

It is important to note that all participants acknowledged the importance of the social aspects of arts activities, not only for those living with dementia but for all attendees. This illustrates the real difference between art therapy and participatory arts – the core purpose of art therapy is to address participants’ health issues; thus, the potential exists for this to be complemented by social gains from the community-based approach in delivering arts activities.

Art is inclusive in nature.

Drawing upon their considerable experience in delivering arts activities, participants described, at length, the inclusive and adaptable nature of arts programs and the capacity for inclusion of all people – regardless of background, age, confidence, or capabilities.  In their accounts of the inclusive nature of arts, participants acknowledged and valued the important aspect of being with people, a sense of belonging, the benefits of social inclusion and the community connections that are encouraged and fostered by the arts, which are underpinned by a collaborative intent. As one interviewee put it:

“I also believe in the whole community aspect of and the relaxation aspect of creativity … It also gives people an opportunity to connect with others, enjoying doing the same thing.” (Artist)

Art activities can be flexible and accommodate needs.

Community art and how it is delivered has the potential to include a vast variety of people, which means the artists can accommodate various needs, interests and capabilities. Generally, participatory arts are delivered in a welcoming manner and are adaptable to various sites and people from all walks of life. Since the delivery mode responds to people as individuals, this means those living with dementia can also be included in creative arts:

“I do think that they (those living with dementia) would be able to participate and they would be able to enjoy the process and I think part of it is actually enjoying the interaction with the people that are around.” (Artist)

In accounts of their capacity to tailor the approach and to be flexible in delivering arts activities, artists proposed some adaptations which would assist participants, including those living with dementia, to remain engaged and included in the sessions. Ideas included: considering some shared tasks; providing an opportunity for people to play a role in the whole activity, based on what they can and are able to do; switching into more manageable or perhaps easier tasks/activities; turning the outcome of the participants’ attempt, even if not completed/or to the standard level, into a piece of meaningful art; giving clear instruction.

There might be some challenges for people living with dementia attending such activities.

Challenges were both participant and program related. The needs and capacities of each individual needed to be considered, whether or not they were living with dementia.

Some challenges that were associated with dementia include memory problems, physical issues, and stigma related to dementia, and these were largely considered by artists and art planners to be manageable in the context of participatory art programs. However, other challenges which also needed to be managed, were experienced by a broader range of attendees. These included a lack of interest in the activity, not remembering their purpose or reason for being there, or what they should expect out of being there, losing an ability to undertake activities perfectly, and finding tasks to be too difficult, anxiety on both sides (the artists and the participant) and the environment itself. From the artists’ viewpoint, even in the face of such challenges, participants/attendees could still be included in arts sessions through making various adjustments and creating an accepting atmosphere for all participants to join and enjoy the program.

External challenges also existed – mainly related to promotion of arts activities (communicating the opportunities), access to the arts activities (transport services), and the persistent lack of dementia knowledge in the community, as well as lack of artists and art planner’s knowledge about dementia, and the impact of dementia. Given that participation is dependent on the knowledge that the activity exists, some challenges were recognised regarding communicating the current opportunities, particularly for those living with dementia in the community. For example, some passive forms of communications including email, mail, making information available on websites and newsletters, were considered as the forms of communication which might not suit all people. Other factors such as lack of partnership with dementia-related organisations, lack of time to establish such partnership, and some hesitations about legalities and ethics of working with people living with dementia, were also considered as factors which might affect communicating the opportunities. However, the vital role of effective promotion of the community arts activities was acknowledged by all participants.

“Yeah, knowing that those opportunities exist, so right from the beginning. Do they understand what is available to them? So, making them aware and letting them know about the opportunity and getting them to those opportunities … I’m saying if they don’t know about it that is a barrier.” (Art planner)

Furthermore, it is interesting to note that generally the artists and art planners had limited knowledge about dementia, and this was explicitly acknowledged by some of participants from both groups. Such findings highlight the urgent need for providing both art planners and artists, as well as the wider community, with dementia education.

“There was a little angry scenario developing there and it just happened that one of our volunteers … just supported her (a person living with dementia) to slightly move to the side and get on with where she was wanting to go. So, I thought then we could certainly learn from some training.” (Artist)

 

So, what can be done?

Considering that community-based arts activities can be inclusive of any individual with a range of capabilities, and taking into account established positive social outcomes for those living with dementia, how can we make such activities more dementia-inclusive?

A multi-disciplinary, appropriate, and holistic communication approach might bridge the existing communication gaps and enable better access to these important opportunities to remain socially engaged. So, a variety of stakeholders, including those who are involved in designing, managing, funding and delivering such activities, as well as dementia-related organisations/services and the people they represent, have a role to play to ensure that people living with dementia and their carers are aware of arts activities in the community.

Artists and art planners will undoubtedly benefit from some dementia education programs to give them an insight into how to engage with people living with dementia and to reduce persistent stigma. Raising dementia knowledge might also assist art planners to be more confident in actively including people living with dementia when designing and developing arts activities for the community.

Furthermore, transport needs of people living with dementia should be considered as they often rely on others to attend activities in the community.

So, on being aware of the activity and attending the activity, as well as relying on the joyful, welcoming, flexible, and inclusive nature of such activities, people living with dementia should be included, engaged in, and connected to the community through art.

Azam Bazooband, Dr. Helen Courtney-Pratt and Dr. Kathleen Doherty from The Wicking Dementia Research and Education Centre, University of Tasmania