Being involved in the community is an important part of leading a fulfilling life following a dementia diagnosis, says Darral Campbell, of Dementia Canterbury. “The most common feedback from the dementia community is that they don’t feel useful anymore, and that they want to give back to the community in some way. They also want to take part in the activities they are interested in, but they don’t feel safe or comfortable to do them anymore.”
A new toolkit has been developed to support a more dementia-friendly community and give those living with dementia the confidence to participate in activities they enjoy. Community Activity Groups for People Living with Dementia: A Guide to Getting Started was designed to encourage dementia NGOs across the South Island to partner with community-based organisations to provide dementia-friendly activities in normalised environments.
Dementia Canterbury began developing dementia specific community social programmes many years ago, by partnering with community-based organisations such as art galleries, museums, libraries, botanical gardens and theatre groups. These social activity groups not only helped people living with dementia enjoy meaningful activities in normal social settings, but also helped support care partners, by giving them a break.
The number of community organisations working in partnership with Dementia Canterbury increased over the years and in March 2019, the Health of Older People’s Service Level Alliance (HOPSLA) decided a ‘how-to’ toolkit was needed to support other Dementia NGOs across the South Island to partner with community organisations.
The toolkit consists of helpful tips, interviews, information and videos on how to get started, as well as a gallery of programme examples. “People with dementia are anywhere and everywhere and community-based organisations need to be responsive in the way they deliver their services,” says Darral. “And the diversity of the programme means looking at our own communities and what might work, given that different things work in different districts.”
While the venue and facilitator are provided by the community organisations, Dementia Canterbury provides the activities coordinator, the volunteers, as well as training. Darral says one of the benefits of working in partnership means no money changes hands. “We really encourage the partnership model, because we can do so much more in partnership than we can do on our own.”
One of those partnerships is with Christchurch Art Gallery, for Artzeimers – an art group for people living with dementia. Lana Coles, Education and Public Programmes Team Leader, created the group after realising seniors was one group in the community they didn’t have engagement with. She was also motivated for personal reasons. “My mum had dementia. I really wish something like these groups was available when mum was alive. Not just for her but also for my father and myself, who struggled with no support.”
Lana says the benefits for the gallery are “tremendous” and they couldn’t run the group without Dementia Canterbury. “They provide the people that come to the sessions, they do a wonderful job of promoting the service, contacting them for reminders and at each session there are social workers and volunteers to help. They also provided training for us on how to deal with the unexpected.
“It’s an equal partnership where each entity contributes what they want to and what they can. The attendees love it, the volunteers love it and it’s also helped our staff to become more accepting and inclusive of older people. The sessions are the same as public sessions, the only thing we had to do was slow it down a little bit.”
Susan Gee, Lead Researcher for the Psychiatry of Old Age Academic Unit, Canterbury DHB, helped put the toolkit together. She says it can be easy for people to become isolated after they receive a dementia diagnosis. “It’s not just about being in your home, it’s about being in your community. So, this is a chance to do things that connect people with the lives they’ve lived, the hobbies they’re interested in, reconnecting with who you are, in places that are familiar to you, and your place out there in the community.
“We know that being engaged in meaningful activities is good in many ways, like keeping your brain stimulated, giving a boost to your mood, being connected with things you love and places you love. For example, if you’re an art lover and you go along to the Dementia Canterbury buildings to do something related to art, versus going to the art gallery in the middle of town in that fantastic building, you can imagine how great that would feel.”
Read more information about the toolkit:
Community Activity Groups for People Living with Dementia: A Guide to Getting Started.