Dementia friendly communities; compassionate and collaborative

Dr Fiona Marshall is a neuroscientist working on treatments for Alzheimer’s disease and other conditions. Dr Marshall also volunteers as an Alzheimer’s Research UK Trustee and is Founder and Chief Scientific Officer of Heptares Therapeutics.

dementiaIn 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 – we are aiming for “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. Living with dementia is often full of many challenges and can leave families isolated, lonely and exhausted; as a society we need to minimise these ongoing issues and promote valued connections within local communities. We know that maintaining these connections supports wellbeing amongst older people with dementia. 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. A dementia friendly society has to be compassionate and collaborative.

The recent release of the “Dementia Atlas” by the government provides a visual map of living with dementia in England. The information used to devise the map uses a range of data, most of which depend upon a formal diagnosis of dementia. Various kinds of information are provided in clear ways which allow anyone to click on their own region and see how this fares compared to the average. This 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 dying where one wishes to do so. There are wide differences between the measures and regions which highlight the need for continued work to narrow these gaps.

One section of the Atlas includes a measure of how dementia friendly an area is compared to a national average. One of the key measures 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 a broad measure of how dementia friendly a community actually is. Dementia friendly communities are ones which embrace and value the challenges of living with dementia of individuals who live in these communities. What matters to one individual and local community may not be helpful to another.

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 as part of a genuine desire to support local residents. However, much more can be done and the real strength of developing such communities are 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 which are often overlooked by national bodies but are nonetheless important now and will be more so in the future.

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 that trend and seeks to understand the particular aspects of living with dementia amongst rural dwellers. There are concerns that, despite the idyllic scenery of rural areas such as the National Peak District, the challenges to developing dementia friendly societies in rural areas are complex for a variety of reasons.

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.

This study has 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 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 all considered as key characteristics of sustainable 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. This 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 fionamarshall2@nottingham.ac.uk or mobile on 07920 813613. A formal diagnosis of dementia is not necessary to take part but you do need to be 70 years or over. Family and friend caregivers are also invited to take part and can be any age over 18 years.

Read ‘Understanding the needs and experiences of people affected by dementia in rural areas

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