Ashley Campbell: Housing needs to be part of the conversation for people living with dementia
To mark World Alzheimer’s Day, National Housing and Dementia Forum co-chair Ashley Campbell encourages organisations to help support people to live well with dementia.
For most of us, our home is the place we feel safe, where we can relax, and enjoy time with family and friends. Our home should be our sanctuary. Having a good quality home is a basic need for everyone, but dealing with a diagnosis like dementia can put the importance of home into sharp focus.
For the 90,000 people living with dementia in Scotland, their families and carers, having the right home can make the difference between maintaining independence and having an active life as part of the community, or deteriorating physical and mental health. In some cases, not addressing housing needs, or leaving it too late, can lead to hospital admission or residential care.
While care homes provide amazing services, we know that most people want to stay in their own home for as long as it’s safe for them, and staying active and independent can keep people well for longer. The Scottish Government has a longstanding commitment to support people to live at home, or in a homely setting for as long as possible and we expect this commitment to be embedded within the new National Dementia Strategy currently being developed.
CIH Scotland has been championing the role of housing is supporting people to live well with dementia for a number of years now, publishing Housing and Dementia Pathways research and practitioner guidance in 2017.
In 2019 we launched the Housing and Dementia Framework with Alzheimer Scotland and Healthcare Improvement Scotland’s iHub. The Framework is a tool for housing organisations to map out what they’re already doing to support people with dementia and highlight if there are areas where they could do more.
The Framework is free to download and you can choose what aspects to focus on to best meet the needs of your residents and community, there’s no obligation to complete all of the aspects at once. You can work through it at your own speed and remember – small changes can make a big difference. Sign up online to show your organisation’s commitment to supporting people to live well with dementia, get regular updates, and help us build a community of practice.
More recently, co-chairing the National Housing and Dementia Forum, we spoke to experts and people with lived experience of dementia to find out what steps are needed to improve housing outcomes for people living with dementia, their families and carers. The Forum report was published in August.
We heard that while there is some good advice and support available for people living with dementia, access to it is not equal. Housing tenure, financial circumstances and ability to navigate the housing system can all impact housing outcomes. This needs to change.
One of the Forum experts told us that a dementia diagnosis can be “like a hand grenade” and that housing might not be top of the list of things to worry about when someone is trying to come to terms with how their life might be changing. But we also heard that early conversations about housing can help people to plan ahead. It doesn’t have to mean immediate action or any drastic changes, but knowing where to go for advice when the time is right and the person feels ready to talk about their options can make a big difference.
The housing sector can be confusing, with different support for adaptations depending on housing tenure and people living in the private sector not always knowing where they can go for advice and information. People with lived experience of dementia have told us that more information about housing would be helpful for them when they get a diagnosis of dementia, and we think that post-diagnostic support provides an ideal opportunity to start the conversation. We need to establish better links between housing, health and social care to ensure that everyone gets the help they need, no matter what tenure of housing they happen to live in.
- Ashley Campbell is the policy and practice manager at CIH Scotland and co-chaired the National Housing and Dementia Forum