Dr Richard Ward, a Senior Lecturer in Dementia Studies at the University of Stirling, shares details of a new research project and explains the challenges faced by people living with dementia in the community.
Approximately two thirds of people with dementia live in the community, and while this figure differs between countries, the overall percentage is rising as care and support migrates to a community-based focus in many parts of the world.
Yet people with dementia face multiple layers of exclusion within their communities and historically have been overlooked in processes of policymaking, planning, design and service provision.
One of the biggest changes to take place in the field of dementia care in recent years is the shift away from institutional care towards supporting people living with dementia to remain at home throughout their journey with the condition. People with dementia themselves have expressed a preference to remain at home for as long as they can, so this shift is broadly welcomed.
One of the greatest risks is that people may end up confined to their home if their local community doesn’t adapt as well. There is a pressing need for neighbourhoods to become accessible, more welcoming and with a greater awareness of the support needs of people with dementia.
While research into the experience of community living for people with dementia is at an early stage, a prominent theme points to changes in a person’s social and spatial experience outside the home following a diagnosis of dementia. Dubbed the ‘shrinking world’, the pattern of change is often characterised by the reduced geographical reach of people’s day-to-day lives and an increasingly limited range of social connections and activities.
Current research shows that people living with dementia face social exclusion across many areas of their everyday lives. Even friends and family members can reduce contact and withdraw, often due to fear and awkwardness. They can face exclusion from social spaces including social clubs and sports facilities. And there is increasing evidence of stigmatising and hostile responses in public spaces. Difficulties in completing everyday tasks such as paying at the shop till, can meet with impatience and disapproval – and that in turn can mean people avoid certain venues and situations.
Evidence shows that familiar environments support people with dementia to maintain independence, stay safe and feel comfortable, while unfamiliar settings or unexpected changes to the environment can be experienced as distressing and disorienting. This is why the accessibility and inclusivity of the local community is of utmost importance.
This is where the idea of dementia-friendly communities and other forms of community development hold out some potential. However, despite their recent proliferation, dementia-friendly communities and initiatives (DFCIs) remain under-researched – and that means few opportunities for sharing of good practice, evidence and learning on an international scale.
There is also an emerging critique that has started to question the role of DFCIs in the context of widespread cuts to social care budgets and reductions in formal service provision. Commentators have highlighted that ‘dementia-friendliness’ emphasises discretionary support for people living with dementia, rather than ensuring their rights and entitlement to community-based services. As a result, questions are being asked about whether the dementia-friendly agenda can lead to real changes and improvements to people’s lives.
Our new research, Centring the Lived Experience of Dementia within Policy, Practice and Community Development, is aimed at better understanding what dementia-friendly community development is capable of and what it means to the people with dementia who are part of these communities. Led by the University of Stirling, the study is a collaboration between teams in the UK, Germany and Canada and we will be working directly with people living with dementia and their care partners.
Our aim is to study the experience of living with dementia in the community and to use this understanding to inform and improve policymaking at local, national and international levels.
In particular, we aim to critically explore how the idea of dementia-friendly communities is being translated into action at the community level and what changes are being achieved. As part of the three-year project, we hope to build an international network of dementia-friendly community initiatives to help share knowledge and good practice and, ultimately, to ensure that anyone diagnosed with dementia can continue to play an important role in their communities.