Extra care housing and dementia: Amanda's blog

This post summarises my reflections on the ConnectED evidence briefing on Extra Care Housing and Dementia. I’m writing from the perspective of a former carer for my late husband who had multiple conditions including dementia with Lewy bodies. Although we never discussed or needed to discuss it, I knew I did not want my husband to go into a care home, or for us to move to Extra Care Housing, and knew that he wanted to remain at home. Until his last 48 hours he was at home.

For me I think personalised care is key to managing care needs. I also think it’s important to recognise that caring is not always something “loved ones” can or want to do. For people with dementia their needs can change frequently, and it is perhaps easier to flex and adapt to their individual needs when they are being cared for in their own home.

A key part of care workers being able to deliver personalised care in Extra Care Housing schemes is to have the time, resources, and training specific to dementia awareness. This should include supporting other residents who may not understand the behaviours and communication of fellow residents living with dementia. The aim of raising awareness should be to reduce any stigma regarding a diagnosis of dementia. For example, describing someone as “wandering” can be viewed by some as unacceptable or derogatory as often the person is walking with a purpose that we don’t understand or can’t be explained by the person themself.

Really understanding the person behind the illness is also fundamental; what was important to them and what still is; thinking (and speaking) in terms of what they can do, not what they can’t do; their superpowers over their challenges. Also, the knowledge of how dementia progresses can help carers and other residents start to adapt routines and environments ahead of them becoming critical, allowing the person with dementia to adapt and make their own choices. As more evidence emerges on twelve modifiable risk factors for dementia prevention¹, it is possible that providing support at the early stages could be beneficial not only to the person but in saving care costs going forward.

This is very much my personal view on the world based on my experiences as a carer. My husband never stopped being the gentle soul, with a cheeky smile and sense of humour. He would still be there for me, could sense when I was upset, and still gave me encouragement and support. We were husband and wife before we were carer and cared for, and that was how we introduced ourselves. I know that this is not the same for every carer, but I do feel that the more friends and carers understand the challenges of living with dementia, the more the experience is improved for both the carer and the cared for. That understanding could help to promote the positives and mitigate the negatives.

Amanda Threlfall
Member of ConnectED Service User and Carer Group
August 2024