In the article, Dr Sue Northrop, Director at Dementia Friendly East Lothian, shares insights into the work they are doing in partnership with the Council to improve the lives of those with dementia by aiming to make their communities more dementia friendly overall.
Almost every day a story about dementia hits the headlines. Cures, crises and challenges abound. A range of metaphors and images are deployed as we individually and collectively make sense of what has become one of the most feared and stigmatised conditions. As a condition primarily linked to ageing, numbers are increasing as people round the world live longer. But the challenge of dementia lies not just in the numbers, but its impact on daily life. Dementia demands a radically different response from policy, services, individuals and communities – traditional ways of thinking and doing do not suffice.
Dementia Friendly Communities have arisen as a widespread and popular response around the globe, offering possibilities for new approaches and thinking. They range in size from villages to continents, led by people in the community or large organisations. Critically, they take discussions about dementia onto the streets and into communities. There are many questions about them, but two relevant to Local Authorities and Integrated Boards are: How do we access the potential of dementia friendly communities? How can local authorities support communities and individuals to be dementia friendly?
Despite the rapid development and popularity of Dementia Friendly Communities, there are no clear definitions and very little theory and evidence about what they are, how they work and if they do indeed make life better for people affected by dementia. This is not unusual in new and emerging areas of practice and policy, but these shortfalls must be addressed if we are to ensure that they work and so we do not waste the massive investment of public hope, energy and money. Hopefully this emerging case study will contribute to this.
In East Lothian we’re taking a community development approach to Dementia Friendly Communities (DFCs), building on theory and research on dementia, community and positive psychology and community development. The model and approach is inspired by the work of the Commission on the Future of Delivery of Public Services in Scotland, The Christie Commission. The Commission set out a vision for Scottish public services designed and driven through working with and building on the resources available to people and communities in co productive, reciprocal and respectful relationships. The lived experience of people receiving services was to drive the organisational, policy and legislative changes required to support this new value-based and relational approach. Local Authorities, Health Boards and other public bodies had a major role in realising the vision.
Dementia Friendly East Lothian (DFEL) is a community led initiative which focuses on the lived experience of dementia in daily life, on people and the quality of the relationships between them. We take an assets based approach, working in ways which connect people to assets in themselves, in their relationships and the wider community. The focus is on shared humanity (we not them and us) and empowering people affected by dementia to participate fully in the lives of their communities and the decisions that matter to them. The Scottish policy environment in dementia, community empowerment and public service reform provides an excellent context and support for this type of initiative.
Older people spend more time (and money) in the local community, it is where life happens – going to the shops, saying ‘hello’ to neighbours, getting the paper, going out for a coffee with friends. People affected by dementia frequently experience a breakdown in these social relationships.
Dementia Friendly Communities support people to stay physically active and socially connected. Stigma and the fear of stigma surrounding dementia are major barriers. Growing impairment and increasingly fragile confidence and anxiety make getting out and about harder and further exacerbate the symptoms of dementia. The potential and actual embarrassment of not being able to do simple things you’ve always done easily and quickly can leave people with dementia socially isolated, lonely, anxious, judged by others and increasingly dependent. Stopping driving, losing employment can be a major loss of status and identity as well as the practical problems they bring. Relationships shift and can become stressed.
Just like other disabilities, the physical, social and psychological environment has a major impact on people with dementia. Noisy cluttered environments can cause sensory overload; impatient, judgemental people tutting when it takes time to find change in the supermarket queue increase anxiety and the sense of being a burden. Poor signage, bad lighting, poor communication all create an environment that makes living with the symptoms of dementia even more difficult. People with dementia often withdraw, cutting them off from resources, assets and life.
DFCs help people affected by dementia overcome the many barriers they face to feeling and being part of normal life, a valued member of the community. The community is rich in resources from goods and services to social networks, it is where normal life happens; it feeds mind, body and soul, it is normal and not stigmatised.
How do we realise the potential of Dementia Friendly Communities and what is the role of the Local Authority? Planning is an obvious area, physical design matters and can make a huge difference, even small changes to signage for example can help. A well designed high street, housing or transport network that supports inclusive and active travel for example, can make a major difference, and isn’t just good for people with dementia. We just need to think about cognitive as well as physical and sensory impairments in design.
But the exciting and new aspect is realising the potential of community, of coproducing, designing and building authentic partnerships with communities. In East Lothian, the Local Authority and the new Health and Social Care Partnership (the Integrated Joint Board) has played a critical role in taking the work of a group of passionate community activists affected by dementia into action that is spreading round the county. This has happened not through high level meetings but through staff in a range of bodies ‘getting’ the potential of Dementia Friendly Communities, often through personal experience, and providing a little bit of help.
A conversation in our Community-led Day Centre asked ‘what is life like in this community if you have dementia and how can we make it better?’. Ian, a committee member, suggested we speak to Sandra, the Community Development worker. Sandra provided advice, encouragement and practical support – a place to meet, printing posters and leaflets, who to contact in the Council. Ruth from Alzheimer’s Scotland and David from Ageing Well got interested and we began to make links. As we spoke to people in the community, support grew and we held community event to develop a community plan and get more folk involved. Over 100 people cam along. A week later, Lindsay and the Brownies were showing residents in a local care home how to do Loom bands! Stories spread by word of mouth and thanks to Robbie and Jim in The Courier, our local paper. Maureen asked why her community couldn’t be Dementia Friendly. We agreed to help each other and Eliot from the Third Sector Interface found funding to help us take the idea out into other communities.
The conversation continued and spread across the county, and a growing number of dementia friendly champions in communities and organisations got active. Community Councils, churches, schools and libraries got involved. We began to connect to the communit-led Area Partnerships which sit within our Community Planning process and develop and report on a local Community Plan. Now activists took the discussion about dementia into wider community conversations about priorities and get support for their aspirations. The Area Partnership staff (Sandra, Stuart, Simon and Stuart, Carolynne and Lorna) made connections and oiled the wheels. Ann from Helmsdale DFC came to inspire us and Dave from the Scottish Community Development Centre helped us run learning events bringing the communities together to learn from each other.
We needed a small central widget to support a network, promote innovation, provide quality information on dementia and oil the wheels. Carol from the Health Board and Anna from Life Changes Trust provided financial help for me to work 2 days a week as a community development worker. DFEL became a Community Interest Company thanks to Elaine from Social Enterprise in East Lothian and Robbie from Business Gateway, so we can now generate money through delivering services like training and yoga.
People affected by dementia now have more support, more choices, more say and we hope more fun! All because folk across the county are making a difference. Lorna from the library set up a dementia hub and carers group. Katie from the Memory Skills team invited us to work with them to build community connections when people get a diagnosis of dementia; Kayreen and Carol invited us to run Dementia Friendly Yoga in day centres and the care home; Kirsty from the Grammar School and Hannah from the Academy invited us to work with their pupils in a host of dementia friendly activities. Helen set up a monthly dementia friendly café in the museum. Paid staff working in community based services taking on dementia friendly activities as part of the work they do, including people with dementia in normal, local activities. Local individuals and groups like Rotary, Churches Football and Golf Clubs often donating funds.
Dementia Friendly East Lothian started in one, rather affluent town, rich in social and environmental capital. This has worked because of a mix of factors – community activism and a community development approach; support of individuals from the third sector, Local Authority, Health Board and national bodies and structures connecting communities to decision making. There are now 8 communities actively engaged in talking about dementia and becoming more supportive of local people with dementia and care givers. Dementia is talked about and increasingly embedded in decision-making.
Most importantly, people with dementia are increasingly aware that there is a community of support around them, they have more choices and things to do and are valued citizens. Services are changing and we are working in partnership with health and social care staff on service innovation and developing East Lothian’s first Dementia Strategy. Exciting times.
This isn’t about communities going it alone, this is about authentic relationships and learning together. It is co production, local authorities and integrated boards helping us come together as a community to talk about what life is like for people affected by dementia, helping us make our communities more inclusive so people with dementia (and indeed others) can access and use the many assets communities bring to the table. Every community is different and works in its own way and needs its own approach.
Dementia Friendly Communities are about community, about us, the relationships and daily encounters between people. Communities are increasingly important as we age and even more so if we are living with impairments. Quality of life is profoundly affected by being able to get out and about, to be greeted with a smile or chat in the streets – to be a person, to see and be seen. This is where the DFEL works, building inclusive, strong communities from being IN community. That is where Local Authorities and others need to focus, developing partnership with communities which build and strengthen communities, not doing things to us.
This small, local approach is a far cry from the large multi organisational approaches to some Dementia Friendly Communities, but is a reminder of the importance of the micro level of the community in which most of daily life is enacted. If we don’t take the community into account we risk losing opportunities and may create harm, damaging these important valuable links that keep people going.
The big threat to our communities is the lack of understanding of what community is and why it matters. Planning decisions, housing, transport, services are often delivered without an understanding of the impact on the community and can undermine community networks and deplete community assets. Large housing estates, traffic laden High Streets, disconnected care homes built next to health centres not amenities and community venues are some examples of the types of decisions that do not strengthen communities. Services too can sever precious community ties and increase stigma and social isolation because they don’t work with people as social and connected beings.
But genuine helpful relationships make all the difference. For us, East Lothian Council, the Health and Social Care Partnership, the Third Sector Interface, the Scottish Community Development Centre and the Life Changes Trust have all helped us realise our potential and begin to become partners with a role to play. Yes there’s some money, but what has made the difference has been when staff have engaged, listened, encouraged and connected. Working alongside and with us.