The release of an official “dementia atlas” for England – a visual map of living with dementia allows anyone to click on their own region and see how this fares compared to the average – is a good starting point for exploring regional differences in care. It includes the rates of diagnosis, emergency admissions to hospital, end-of-life care and dying where one wishes to. One section on how dementia-friendly an area is compared to a national average is a measure of the number of people who have attended a dementia friends session, where those with dementia can learn about living with the condition.
In recent years there have been major initiatives to change the way that society is able to respond to the growing number of people with dementia, and “dementia-friendly societies” – where people with dementia and those who care for them are not alienated, or even merely tolerated, but enabled to sustain their local connections and lead meaningful lives – is something we should aim for.
Living with dementia – both sufferers and those close to them – is often full of many challenges and can leave families isolated, lonely and exhausted. As a society we need to minimise these issues and promote valued connections within local communities. We know that maintaining these connections supports well-being among older people with dementia. And these connections can be supported in ways which are acceptable, accessible and affordable to individuals and local communities by many organisations including businesses, public services and the voluntary sector.
While the atlas scheme is to be lauded as a way of improving our knowledge about dementia as well as reducing stigma and stimulating inclusion, it is a broad measure of how dementia-friendly a community actually is. A dementia-friendly community is one that embraces and understands the individual challenges of those living with dementia. What matters to one person and local community may not be helpful to another.
Building and sustaining dementia-friendly communities is a challenge that 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 as part of a genuine desire to support local residents. However, much more can be done. The real strength of developing such communities is that they have to include people affected by dementia, family caregivers, neighbours and providers of services.
My own work seeks to examine what makes a dementia-friendly community as a way of understanding the particular diverse needs of each community.
Rural communities face particular challenges. 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 in urban areas. A study we’re carrying out with the Alzheimer’s Society and supported by the Dementia Centre at the University of Nottingham seeks to understand the particular aspects of living with dementia that apply to people in rural areas. There are concerns that, despite the idyllic scenery of rural areas such as the nearby National Peak District, the challenges to developing dementia-friendly societies in rural areas are complex for a variety of reasons.
In an ongoing study, Scaling the Peaks, we are visually mapping services and resources available to people with dementia and their carers and examining how these are affected by the local geography and seasons of the year. The study includes people with dementia and providers of support in a very rural location with a particular interest in views from older people with dementia about what goes into making a dementia-friendly community.
In short we are examining the ways in which rural dementia-friendly communities operate – including working with voluntary, health and social care providers to observe and discuss the ways in which they collaboratively work to build and maintain dementia-friendly communities. We know there is a diverse and committed number of mostly small “grassroots” initiatives seeking to help.
So far our findings suggest that the role of 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 infrastructures such as transport, internet and landline services, fuel and housing, as well as accessible health and social support are also key to creating sustainable rural dementia-friendly communities.
We want recruit up to 60 families living with dementia as part of the longitudinal study to understand their experiences and views about living in the Peak Park as part of this study. 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. We also plan to make a toolkit so that dementia-friendly communities can be built in ways that 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.