Making housing and dementia a national priority: third update from the National Housing and Dementia Forum

Ashley Campbell and Lesley Palmer, Co-chairs of the National Housing and Dementia Forum are continuing to gather evidence on what needs to be done to ensure that people with dementia are able to live well in their own homes for as long as possible. This blog summarises the discussions of the third evidence session focussing on the support that is available for people living with dementia. You can find out more about the National Housing and Dementia Forum here and read the Chairs’ blogs from evidence session one on Housing Options and Adaptations here and evidence session two on Access to Advice and Information here.

In this session we asked our experts to consider:

• the relationship between housing and other sources of support in the community;
• the role of housing in post-diagnostic support; and
• how housing can improve links with other forms of support for people living with dementia.

The group reflected on the fact that access to support for people with dementia can vary depending on the tenure of home that they live in and whether or not family members were proactive in seeking out support.

It was suggested that private tenants face particular issues having their homes adapted if they cannot get permission from their landlord. As our population continues to age and tenants in the private rented sector become more diverse, more needs to be done to ensure that private landlords are aware of their responsibilities and legal obligations to make reasonable adjustments to properties and to understand why this is important for the long term viability of the private rented sector.

There is a clear need to ensure that housing tenure is not a barrier to receiving support for people living with dementia and for greater investment in organisations that reach out to people beyond the social housing sector. We need to keep in mind that the majority of people in Scotland own their own home and that around two thirds of people with a dementia diagnosis are living in mainstream housing, not in specialist accommodation.

With regards to post-diagnostic support, despite the fact that everyone who receives a diagnosis of dementia should be entitled to at least a year of support from a link worker, unfortunately not everyone receives this and it was described as a ‘postcode lottery’ in terms of access to support and the quality of support provided.

While it was agreed that having a discussion about housing needs as early as possible could help to avoid a crisis later on, it was also pointed out that the early stages after diagnosis can be a very distressing time for people with dementia and their families. Having discussions like this requires time for the link worker and their client to build a trusting relationship and cannot be part of a ‘tick box’ exercise. The group talked about pressures on the post-diagnostic support service and that greater resources are needed to ensure that everyone has access to a skilled link worker.

The pandemic has further highlighted the issue of isolation for people living with dementia and this has been particularly difficult for people living in sheltered or amenity housing where communal areas had to be closed to limit the risk of transmission. Technology has been a huge support for some people through the pandemic and will remain a key part of many people’s lives – but not everyone can use or wants to use technology to stay connected and it’s important not to replace face to face support with digital.  

We talked about how people view sheltered housing and agreed that it would be beneficial to undertake an attitudinal survey to better understand how the pandemic has affected the way that people think about their homes and their aspirations for the future. What type of homes do people really want to live in when they get older? In the meantime, we all need to work on normalising conversations about ageing and mainstreaming solutions like accessibility, adaptability and dementia friendly design across all tenures.