In recent years there have been several major initiatives to change the way that society is able to respond to the growing number of people with dementia. The ideal is a “dementia friendly society” where people with dementia, and those who care for them, are not alienated or merely tolerated, but are enabled to sustain their local connections and lead meaningful lives.
As we know, living with dementia proffers many challenges and can leave families isolated, lonely and exhausted. As a society we need to minimise obstacles and promote valued connections within local communities. We know that these connections help to generate a sense of wellbeing and there are ways in which society’s infrastructure can be adapted to optimise community participation of the more vulnerable of its members, including those with dementia. By infrastructure, we mean businesses, public services and the voluntary sector.
The recent publication of the “Dementia Atlas” by the government provides a visual map of living with dementia in England (www.bbc.co.uk/news/health-37092989). The information used to develop the map relies on a range of data, most of which depends upon a formal diagnosis of dementia. Various kinds of information are provided in clear ways which, by one click, allows the viewer to see how a region compares with its neighbours. The map is a good starting point for exploring the regional differences in the care of people with dementia and includes the rates of diagnosis, emergency admissions to hospital, end-of-life care and the degree to which there is an infrastructure to allow the person with dementia to die at home if he/she so wishes.
There are currently wide regional differences between the various criteria comprising ‘dementia-friendliness’. One section of the Atlas includes a measure of how dementia friendly an area is compared to the national average. A key measure gives an indication of the number of individuals who have attended a Dementia Friends session to learn about living with dementia. Whilst this scheme is to be lauded as a way of improving our knowledge about dementia, reducing stigma and stimulating inclusion, it is also a broad measure of how dementia friendly a community actually is.
Building and sustaining dementia friendly communities is a challenge which many key organisations, such as GP surgeries, NHS hospitals and care providers are enthusiastically engaged in. Small local businesses such as hairdressers, post-offices and pubs are managing to provide dementia friendly places, often in the absence of any national initiative, but in a genuine desire to support local residents. However, much more can be done and the real strength of developing such communities lies in the participation of people actually affected by dementia, be they family caregivers, neighbours or providers of services. My own work seeks to examine what makes a dementia friendly community and understanding the diverse needs of different communities. Rural communities, for example, face different and particular challenges which are often overlooked by national bodies.
There are larger numbers of older people living in rural than urban areas in the UK, yet the majority of dementia care research is located within urban areas. A study funded by the Alzheimer’s Society and located at the University of Nottingham bucks this trend by seeking to understand the particular circumstances of living with dementia amongst rural dwellers. However idyllic the scenery of rural areas such as the National Peak District, developing a dementia-friendly community in these more isolated places comes with a range of challenges not faced in more urbanised areas.
In a study called Scaling the Peaks; Understanding the barriers and drivers to providing and using dementia friendly community services in rural areas: the impact of location, cultures and community in the Peak District National Park on sustaining service innovations, we will visually map the services and resources available to people with dementia and their carers, and examine how these are affected by the local geography and seasons of the year. This study includes people with dementia and the providers of support in a very rural location with a particular interest in what makes a dementia friendly community as told by older people with dementia. In short, we are examining the ways in which rural dementia friendly communities operate.
We commenced work with voluntary, health and social care providers by regularly meeting with them to observe and discuss the ways in which they collaboratively work to build and maintain dementia friendly communities. Early evidence suggests that there is a diverse and committed number of mostly small “grassroots” initiatives which seek to value all members of a community. So far the findings suggest that the church, local shop, pub and agricultural markets are seen as pivotal places which are valued by members of the community; arguably more so than public services locations such as health centres, libraries and village halls. Robust reliable and affordable facilities such as transport, internet and landline services, fuel and housing, as well as accessible health and social support are all considered fundamental to rural dementia friendly communities.
We are currently seeking to recruit up to 90 families living with dementia as part of the longitudinal study to understand their experiences and views about living in the Peak Park. Each family will be visited by the research team every few months to discuss their everyday lives and explore what they value the most in their communities. This will include physical, social and community sharing activities in addition to the everyday needs.
This information will be used to develop a visual and conceptual map of the area to identify the types and locations of dementia friendly communities. The map will be freely available on the internet. We also plan to make a toolkit so that communities can build their own dementia friendly communities in ways which are useful for their residents. This will help in the future planning of services and support the development of truly dementia friendly communities across the trajectory of living with dementia.
Older people and their caregivers are very welcome to discuss the possibility of taking part in the study by contacting Dr Fiona Marshall by email on firstname.lastname@example.org or mobile on 07920 813613. A formal diagnosis of dementia is not necessary to take part but participants do need to be seventy years or over. Family and friend caregivers are also invited to take part and can be any age over eighteen years.
For more information: www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2997