Extra Care Housing for people living with dementia – finding out what is available and who it is suitable for

The other day a friend asked me for advice about extra care housing for a relative who is living with dementia. It’s a couple of years since I was the Housing LIN dementia lead and since I completed my PhD on the practicalities and possibilities for people with dementia to live in extra care housing, so I wondered how much might have changed. What good timing that the Housing LIN had just reported on the launch of the findings from the Dementia in Extra Care Housing (DemECH) research project at the House of Lords. This was an ideal opportunity for me to read the latest research findings to see if I could find information to help my friend, and it was great to see that there were three new resources available aimed at different target groups.  

I straight away dived into the booklet aimed at commissioners and professionals. It was reassuring to see reflected the different models of Extra Care Housing for people living with dementia, each with their own pros and cons. Equally reassuring were the key insights provided to help commissioners and professionals, together with the recognition that there is no one-size-fits all, that everybody is an individual with their own unique needs. 

There is also a helpful section on the challenges and benefits of extra care housing for people living with dementia – essential for professionals hoping to explain what the options are. Moving in when someone is still able to build positive relationships with staff and other residents is paramount, as is being able to get used to the environment and develop new routines. That all resonated with my previous experiences, but still didn’t give me the detail I wanted to help my friend. 

I turned next to the booklet for people and families affected by dementia. It started with a clear explanation of what Extra Care Housing is and described the different models in easy-to-understand language. Irrespective of the model, what stood out is the statement that the experience will also depend on how individual schemes are designed, operated and staffed. The booklet sets out the benefits and challenges, helping people considering Extra Care Housing to have a realistic view of what might be on offer. From my experience, the café and shared facilities in an extra care scheme are often the glue that binds the community together.  It’s essential for people and families affected by dementia to visit a few different places to really get the feel of them and to see which might suit them best. Have a cup of coffee in the café and chat to some of the residents!

Having supported my father to live at home with dementia over the last few years, as a family we found the experience of managing the transition to a new home very difficult. The DemECH booklet for people and families affected by dementia posed the question of whether Extra Care Housing can be a ‘home for life’? It recognises that some people might benefit from an environment with more intensive staff support, and that there is evidence that the earlier you move into Extra Care Housing the more likely you are to live well there for longer. As recommended in the APPG Housing for people with dementia – are we ready inquiry report, where housing providers and local authorities use an allocation panel, I’d urge them to give early priority in the allocation of apartments to those living with dementia, bearing in mind the progressive nature of the condition and the importance of settling into a new environment earlier rather than later.  

The APPG report also highlighted that people living with dementia and their carers do not always receive sufficient information and advice about housing implications at the point they suspect or receive a diagnosis of dementia. The timeliness of post diagnostic support and advice is crucial. We missed the opportunity of moving my father into Extra Care, partly because there was limited choice in his neighbourhood, and partly because he wasn’t ready to consider it.  It would have been helpful for us to have external support from professionals to help the family consider housing options to make the right decision at the right time.  In my view, these booklets are vital tools to help professionals, family and people living with dementia to consider the options and make the right choices.

I welcome the findings of the research and the way they have been made accessible through the booklets.  I have already passed them to several of my friends who have said the case studies provided great insights, and the booklets helped them to understand what Extra Care is. I hope the Housing LIN can support the profession to use the booklets to shine a light on this still little understood but valuable housing with care option.   

If you found this of interest, view a range of other resources on housing and dementia curated by the Housing LIN on our dedicated webpage here.


Posted on by Sue Garwood

Katey, your podcast is a very useful summary of the value of each booklet. It was lovely to see your name again, and that you have completed your PhD and are now working at the University of Sheffield. I agree with you about the importance of post-diagnostic support but I'm also aware of the reluctance of some people with cognitive decline to see their GP and start the process. It requires acknowledgement first that there is a problem that is not only a function of ageing.

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