Research into dementia, not only on people with dementia and their partners but also on dementia in general, most often focusses exclusively on the disease itself. This is something that Therése Bielsten, researcher in the Department of Health, Medicine and Caring Sciences, wanted to look at more closely. The work on the three chapters that constitute the first part of her thesis showed that nearly all interventions focus on the disease, taking a problem-oriented approach.
– In a sweeping generalisation, it’s taken for granted that this approach fits everyone: all couples are depressed, that partners feel a huge burden, and so on. This approach mirrors the objectives and outcome measures used for the interventions. But it doesn’t have to be like that for everyone, and in some cases such an intervention is not meaningful.
Therése Bielsten claims that a focus on disease is also seen in the healthcare system. There’s a risk that a person who receives care that is focussed solely on problems and who is given information about only negative aspects can be influenced and will experience the situation as he or she is expected to. Photo credit Thor Balkhed
– I’m not saying that this is not important. Of course it’s important to provide information about dementia, and many people do experience depression, and many relatives experience a loved one’s dementia as a burden. But what I am saying is that something is missing – a focus on what is positive and healthy – such as we see when dealing with other chronic diseases. This is missing in dementia care.
Therése believes that it would be possible to treat dementia in a similar way.
– Concentrate on what is healthy, what you have and what you can do, instead of what you have lost and what is no longer possible. Dementia care here is a long way behind the care given in other chronic disease conditions.
One component of a research programme
The thesis was part of a large research programme based in the UK in the period 2014-2019. The study was a response to an initiative taken by Britain’s former prime minister, David Cameron, who invested huge sums into research into dementia and improving the quality of healthcare and everyday life for those with dementia and their loved ones. The study consists of eight coponents, of which Therése’s thesis is the sixth. She visited Manchester for the first time in 2015 at the start of her doctoral project, to attend a conference arranged as part of the research programme. When she arrived, she realised that many of the participants and those giving talks themselves had dementia.
– This was remarkable, and a true eye-opener. Society in Great Britain is more inclusive – there’s more support and the volunteer culture is much more advanced.
The research described in the second part of her thesis was carried out in collaboration with other researchers. Here, Therése recruited several couples in which one of the partners had dementia.
– Somehow it seems to be more reliable when it is the person involved who says it. It feels as if you have a better opportunity to make more meaningful interventions, or at least that the chances of this are greater when you have listened to what they are asking for.
And the result – an app
During work with the second part of the thesis an app, DemPower, was developed, based on the conclusions and material that Therése and her colleagues had discovered. This is divided into four principal topics and several subtopics, and allows the user to view informational videos, videos of couples talking about the subject, and finally to receive suggestions for an activity, such as a checklist to make their home better suited for people with dementia. One special subtopic in the app was a playlist that proved to be popular as dance music for several couples.
– Several couples described that it was dance in particular...that it was wonderful just to release their inhibitions and dance with each other, something that they may not have done for ages.
The app is still available, and the plan is that it should continue to be used. Photo credit Thor Balkhed
– Now that the research programme is over, major funding is required to carry on with a large study. I haven’t got very far with that yet, but in the meantime I’m thinking about using the app in other ways.
One need that Therése identified was that couples want to meet other couples, and there are not many places available for this.
– I suggest that groups could be put together and use the app as a conversation starter. That’s the first idea I have, and then we’ll have to see how we can get started on the large study.
Return to Manchester
Therése returned to Manchester in 2019 to present the results of her study. She was, however, not alone on the journey, but accompanied by one of the couples who had participated in part three of the thesis work: a feasibility study of the app.
– There had been amazing progress for me between the first conference in 2015, when I was surprised by the fact that people with dementia were participating, and the final conference in 2019. Now, I found it completely natural. This is something that we can truly learn in Sweden from, for example, Great Britain. We were up on stage together, but it was the couple who described both the result and their experiences.
Therése afterwards asked the couple about their experiences of the event.
– The woman with dementia said that she had never felt herself less singled out for attention than when on stage. Both of them felt it to be completely natural, given that people at the conference didn’t know who had dementia and who didn’t. And it didn’t matter: everyone contributed important knowledge, and I’m sure that they felt important because they really were important.
Translated by George Farrants
Photo credit Thor Balkhed