How community groups help create a Dementia-inclusive society

This blog shares some things we’re hearing from small community groups, people living with dementia and unpaid carers, about what’s working and what they need.

For many years we’ve been supporting projects relating to life with dementia, rural connections, and creating opportunities for people to be involved in their local communities. People often come to us for advice on setting up dementia-friendly initiatives. Recently in Peebles we have been approached by people interested in setting up a Meeting Centre locally, and we were able to share some practical advice based on our experience in East Lothian. We’re always doing what we can to link people up with one another, to link groups and to feed into the bigger picture.

The small, local spaces that matter a lot

We’re hearing from small groups through our Linking Local project like the Dementia-Friendly Aberfeldy Collaborative. They have worked hard to make places and spaces more accessible by, for example, adding images and better signage for public toilets. They now feel that there are some gaps around local awareness and understanding. These smaller groups work hard to provide the practical changes but often need some extra support and resources to make the wider impact in their communities.

When small community groups understand dementia inclusion and make practical adjustments, it has lots of potential to help people maintain their social connections. And of course, it means engaging with people living with dementia and those who don’t yet understand dementia. Engaging everyone, and creating more channels for learning, is vital for communities which celebrate and include people living with dementia. And understanding dementia is relevant for every kind of community group. People living with dementia should have the chance to get or stay involved in whatever they love doing – whether that’s art, music, enjoying the outdoors, history, sports, literature, politics, community-building, the environment – everything.

Community groups learning from each other

In the Scottish Borders, we have been coordinating the sharing of learning among the various Creating Better Lives projects funded by the Life Changes Trust. Each of these groups is unique and has a different model, but all share in common the fact they are supporting people living with dementia and their family carers. Last week we brought some of these groups together for a virtual visit at the inspirational ‘Kirrie Connections’ Meeting Centre. Although some of our groups are very small and informal compared with Kirrie Connections, some useful learning was prompted by basic questions around funding, volunteers, GDPR, personal care and practicalities of storage.

Connections were made with promises to facilitate further virtual meetings, for example Graham at Kirrie is going to put the Selkirk Church Memory Café in touch with Happy Highlanders, which is a similar size and like them, relies on volunteers. It was also very useful to have in our midst a local councillor who promised to speak to people about storage facilities! Although not as good as a real-life visit to Kirrie (we missed the soup!) it was very useful to have a guided tour, to see simple things like doorframes in a clearly contrasting colour and to get a real feel for the very real community connections which were literally happening as we had a tour of the car park area. Following on from the visit we now have practical sharing of contacts for further learning, potential follow-up visits between other groups, and ideas for our own future shared learning sessions.

Peer support – from advice to a cuppa

People who are living with dementia need different types of support at different times in their life, and this is also true for unpaid carers.

“My Dad is my Gran’s main carer but after a couple of bad falls she needed a bit more support to avoid a long hospital stay and continue to live in her own home. It was only family members who were able to give her this type of support, especially during the peak of the pandemic when care packages were already being reduced. It would have been great if there was some support to those of taking on the caring role for the first time.”

Flexibility and adaptability are key messages we’re hearing from carers. What works at one point in their life may no longer work six months later. Carer support needs to accommodate the unexpected twists and turns – and this is where peer support really makes the difference.  The level of support and type of support can fluctuate – sometime it’s a cup of tea and a good listener that’s needed, other times it might be specific advice around care support or finances.

Smaller community supports can often be more flexible and responsive compared to larger national support services. They have very local knowledge about what is available and often know the key people to contact. We’re delighted to see more local dementia-inclusive networks forming – so everyone can be involved and get whatever support works best for them.