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Strategies for relatives – a UCL research study

The Strategies for Relatives study tested an intervention to reduce anxiety and depression in people caring for someone with dementia.
I saw in my clinical practise and research papers said that family carers of people with dementia found it difficult and were particularly likely to develop depression or anxiety, and that often led to breakdown of care. In order to do something about this and to do something that was possible to be rolled out and scaled, I developed what we call the START intervention, which stands for STrAtegies for RelaTives. And we know that they are a group who are particularly likely to become unwell, and with 40% having clinically significant depression or anxiety. And that can often lead to breakdown of care. I first became interested in this when I saw clinically how difficult many people found it.
And then I began to think about why it was that some people didn’t become depressed and anxious. And I thought that was really quite interesting. And so we did as a study where the hypothesis was that the way people coped with a difficulty would make a difference to whether they became depressed and anxious. So everybody had a difficulty, though some have more or less when they’re looking after somebody with dementia. And broadly and simplistically, you can divide coping strategies into three ways. So you can say that problem solving, which is what we doctors try– not necessarily very successfully– to do, is just take away the problem.
And you can what we call emotion-focused, where you perhaps talk to your friends about it or laugh about it. But you accept that there is a problem, and you don’t try and change it. You just find ways of managing it. Or what we might call dysfunctional coping strategies, which might also be what we doctors sometimes do, which is drink too much or get annoyed. So our idea was that people who use more problem-solving strategies would do better. But that wasn’t actually the case. It was people who used emotion-focused strategies who did better.
So obviously, I changed my mind immediately, and it became totally obvious to me that, since dementia is an unsolvable problem, that what we had to do was help people use emotion-focused strategies, and that trying to solve a problem which is unsolvable is a bit like banging your head against a brick wall. We thought that we would use this therapy which looked at coping and try to help people use emotion-focused coping, although they also tried to help them solve the problems that were solvable.
And we thought we wanted to make it so that we could roll it out into the National Health Service. So we would use psychology graduates– that’s people with a psychology degree– there’s a lot of them around, relatively available. And we would have them supervised by clinical psychologists. And that’s what we did. And we wrote it all down in manuals so that it could be reproduced. And we– so we had a focus with each of the sessions. But we also did things teaching people relaxation so that they could make themselves feel less anxious, however bad things were. In the last session, we got people to write a plan of what they would do in future. And there was a message.
We’ve got different strategies. Some will work for you, and some won’t. Use the ones that work for you. So that’s what we did. And we followed people up at four and eight months, and then at one year and in two years to see how they were doing. And they did well. So by two years afterwards– and we didn’t do any top-up. The people in the intervention group were a seventh as likely to be depressed as the people who were in the treatment as usual group. So that’s what START is. It’s a therapy to help carers cope with being carers of people with dementia, which reduces anxiety and depression short- and long-term.
We obviously want to make it as available as possible. In the trust in which I work clinically, we’ve gone to our clinical commission group, and we’ve got money for it, and we’re using it. And that’s been the same in another couple of London trusts.
We also went to the Alzheimer’s Society and asked them for funding to disseminate. And we’ve been teaching it to trainers so that they can train other people to do it. And we had the last session from that this morning, coincidentally. And we’ve taught, I think, a couple of hundred people throughout Britain– psychologists and specialist nurses– to become trainers so that they can train less-specialized people and provide this intervention. And we’re going to follow that up. We are following that up to see whether it’s actually working and whether people are actually getting it.

Watch Prof Gill Livingston describe the START (STrAtegies for RelaTives) programme and her research into carer depression and anxiety.

In the video you’ll learn about three categories of coping strategies:
1. Problem Solving
2. Emotion Focused
3. Dysfunctional

You’ll hear how Prof Livingston’s research identified that emotion-focused strategies were most effective, and how an intervention was developed using this knowledge to help carers cope with being carers of people with dementia.

How can you access START?

The best thing to do is to ask your local Trust if it provides START for relatives – you can point out that it is an evidence-based intervention and it fulfills NICE guidelines to offer support to carers of people with dementia. Members of the research team offer training and there are resources and contact details on the link below this article, so feel free to share the link with your local GP or memory service to make them aware of the programme.

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The Many Faces of Dementia

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