Choice And Meaning In Dementia Care

We’re planning to open The Bine, a network of day centres for people with dementia, offering a radical new approach to dementia care. In this 2017 audio recording, you’ll hear how the project got started and the ideas started to flow.

Discussion
Brainstorming: how could we make dementia care better - for patients and their carers?

It was July 2017, a couple of weeks after the UK’s inconclusive general election. 

During the campaign, the Prime Minister, Theresa May, had put forward proposals for a major overhaul of social care. With funding for care in crisis, the proposals would have meant that those with homes of their own or with savings would make a larger contribution to the costs of their own care.

Almost immediately, the opposition’s riposte was that this amounted to a ‘dementia tax’. Dementia is an illness often requiring long-term care, and the costs can be substantial: typically, care-home costs are around £30,000 per year – that’s a couple of thousand more than the average salary. So, through no fault of their own, ordinary families affected by dementia could very quickly find their savings wiped out. 

There was a public outcry and the proposals were quickly withdrawn.

Perhaps, I thought, this was the time to firm up on the ideas that had been floating around in my head for a while, ever since my wife, Lena, had been diagnosed with Alzheimers in 2013. If we could find a way for those with dementia to be well taken care of during the daytime so that family carers could continue in employment, if we could prevent carer burn-out, my instinct was that those diagnosed would stay at home longer and the cost of dementia care would fall. Surely this solution would suit everyone better?

But my ideas were still only half-formed and theoretical. Personal too. It’s what Lena and I wanted – for the two of us to stay living together in our own home for as long as possible. But did other people affected by dementia – those diagnosed and their carers – feel the same way as us? I turned to Andy Walker for advice and input. 

Andy’s an experienced social worker, good with people, fun to be around. I met him when he was seconded to a research project here in Salford – ‘Living Well with Young Onset Dementia’. His role was not so much to be involved in the academic work, but to stay in close touch with all the people who were giving evidence – those with dementia and their carers. Andy’s ear was close to the ground. He knew everyone in the local dementia community, and everyone knew him.

In the course of two fantastic 90-minute brain-storming sessions with Andy, all the main ideas for The Care Combine took shape, and I knew what The Bine would look like, how it would work. (We didn’t call it The Bine back then. It was ‘The Club’.) I owe a debt of thanks for Andy for his role in shaping the dementia care project we’re starting out on today.

Luckily enough, I recorded both sessions, and I thought you’d be interested to hear how our ideas evolved. The four-minute segment below illustrates how quickly the ideas built and overlapped, one on top of the other.

Listen for these key points:

  • The need for choice, and the implication choice might have for the Bine building design.
  • The importance of treating people with dementia as ‘fully functioning adults’.
  • Staff:member ratios at the Bine. (Since then, we’ve set our aims even higher.)
  • People want meaningful activity.
  • ‘Meaningful’ means different things to different people.
  • A meaningful activity for some would be taking the role of a helper.
  • The advantages of involvement with the Bine even in the early stages of dementia.

If you listen carefully, you’ll hear Lena murmuring assent in the background. Poor Lena! At around the 3-minute mark, you’ll hear that she’s had nearly enough of all this talking. It’s not fair really, for me to be dragging her along to meetings like this. If The Bine had already existed, I wouldn’t have needed to – and she’d have been busy doing things that she’d have found a lot more interesting.

So here’s the conversation with Andy – that’s him in the picture. He speaks first:

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