Why do communities matter to people living with dementia and care-partners? How can we in communities make a real difference? What does a dementia friendly community look like?
These are some of the question we addressed at our international conference in Haddington: Shifting Paradigms about Dementia: Including people living with dementia in research, policy and practice: Community Empowerment & Dementia
The event was third in a series of events run by Dementia Friendly East Lothian, in partnership with the Universities of Stirling and Strathclyde. The seminars bring people living with dementia, care-partners, academics, services and communities together to share knowledge and learn from each other. The events are funded and supported through the Scottish Universities Insight Institute (SUII) which supports programmes of knowledge exchange which address and provide insight on substantial issues that face Scotland and the wider-world. So dementia fits well! You can view the presentations here
Our aim was to bring academics out of universities and into our communities to learn together and translate cutting-edge research into real life. We weren’t disappointed!
Councillor Fiona O’Donnnell, Preston, Seton & Gosford, Cabinet Spokesperson for Health and Social Care welcomed us and spoke of the importance of communities in helping people with dementia and care-partners have a good life. She was impressed by how much communities across East Lothian were doing.
Our chairs for the day were Agnes Houston, MBE and Anna Buchanan. Agnes was diagnosed with Alzheimers in 2006. She joined the Scottish Dementia Working Group soon after and has campaigned on many issues including training and raising awareness of the visual difficulties many people with dementia experience. Agnes is a Dementia Alumni. Anna leads the Life Changes Trust’s programme on people affected by dementia and has worked previously for the Older People’s Commissioner for Wales.
We started the day hearing from local people with dementia who had met the day before to decide what they wanted to say. The room was hushed when Ted said he hadn’t expected to stand up and speak, but he was determined to take life on and how supported he was by hearing the experience of other people with dementia. Paul Thomas from DEEP (The Dementia Engagement and Empowerment Project) fed back that groups across Scotland wanted a normal life in the community, getting out and about, valuing relationships and not being stigmatised or bullied.
There was a lot of discussion about the importance of transport and Andrew from East Lothian Council said he would work with us to find solutions. We cheered!
We then heard from 3 internationally renowned academics.
Professor Myrra Vernooij-Dassen from The Raboud University Alzheimer’s Centre in the Netherlands chairs a pan-European research network - Interdem. She trained as a medical sociologist and has conducted a large body of research on quality of life and quality of care. She spoke about the importance of Social Health and the importance of the quality of our social relationships. Social health is the ability to participate socially, as a citizen and to maintain at least some degree of independence and autonomy and be treated with dignity. Myrra explained that social networks and cognitive stimulation can support brain function explained how cognitive stimulation influences brain processes by using alternative and more efficient brain networks and combining physical, mental and social activities seems to contribute to brain reserve. Keeping curious, connected and active can help compensate for damage caused by dementia.
Professor Dawn Brooker is the Director of the Association for Dementia Studies and researches how lived experience, research and care-practice come together. Dawn is a clinical psychologist and was mentored by Professor Tom Kitwood, since his death she was invited to take his work on Dementia Care Mapping. Dawn spoke about developing Meeting Centres for people living with dementia and care-partners. Research shows the positive effects of psychosocial interventions for people with dementia as well as gaps in care and support for people with dementia and care-partners living in the community. Meeting Centres provide practical help and emotional and social support; they are local, friendly and connect people to each other and their sense of community (Access the report here). Centres help people adapt and adjust to living with dementia and being a care-partner practically, socially and emotionally.
After a busy, buzzing lunch, we settled into our afternoon workshop led by Cormac Russell. Cormac is Managing Director of Nurture Development and a faculty member of the Assets Based Community Development Institute at Northwestern University, Chicago. Over 20 years, Cormac has worked in over 30 countries and is passionate about change driven and led by communities and citizen-centred democracy. In the workshop, we told each other stories about community and what it meant for us. Alison spoke about making friends waiting for the bus; Fiona told us about her Dad who brought the neighbour’s washing in when it rained and explaining this to new neighbours when he’d moved house. We talked about how everyone matters and has a gift to give and how the way we treat each other makes all the difference.
We agreed that how we treat each other in our community makes a big difference to our quality of life, health and well being. This is bigger than dementia, it’s about everyone feeling included, valued and respected. Our experience of daily life and academic research show that feeling part of a community, connected and respected is good for our hearts and souls and brains. We talked about how accessible, helpful services that helped us stay active and involved made a big difference and change lives.
Here are some of the comments we got back:
“Thank you so much for the very inspiring meeting. It was a manifestation of the shifting paradigms. The day will have consequences for my future work.”
“I was struck by how strong a sense of community there was in the room and the sense of solidarity and affection was palpable.”
“The minute when Ted stood up was a very special one…. ’magic moments’ of supporting people with dementia to find their voice…And Agnes, as always … wonderful - quietly looking after people, making them feel welcome, inspiring but never daunting, full of love - you have so many gifts!”
“I got so much out of the two days; learned so much about myself and was given the ability to look at my neighbourhood and community through a different lens.”
“It was a wonderful experience being there. Cannot wait to get more involved”
“What an amazing day in so many ways. So much inspiration, joy, hope and understanding which brought on a few tears for me. I loved the speakers and so enjoyed listening to people and sharing experiences . I love, love ABCD Well done!!!! “
We left the day with work to do! We’re looking forward to working with our Friendship groups, communities, East Lothian Council and the East Lothian Health and Social Care Partnership to make change happen.
We've started to use what we learnt from the day already. If you want to get involved, get in touch. You can sign up for our newsletter here.
Thank you to everyone who came along to the event and helped us organise and run it. A massive thank you to people from communities and organisations across East Lothian who came along and gave of their time, enthusiasm and experience so generously. To SUII for funding and organisation. Stirling and Strathclyde Universities for working with us and supporting a rather unconventional event. To DEEP for supporting people with dementia to get involved and have their voice, To your wonderful speakers who inspired us and learnt with us and the Maitlandfeld House Hotel who were so helpful and flexible all along.