We talked to Gail Mountain about the challenges of effective person-centred research and measuring outcomes.
How does your background as an occupational therapist give you an added perspective in your dementia research?
I first became involved in dementia research at the end of the 1980s, and it was serendipitous. I’d just had a second child and was working part-time, and a job became available in research. In research, you can work flexibly; evenings and weekends for example, and as an occupational therapist working within the health service, I had little flexibility in that respect. The project was there, so I applied for the job and was successful.
The research I was engaged to undertake was concerned with how ward environments impacted upon the behaviour of people with severe dementia, and it looked at a range of environmental issues.
Having worked with people with dementia in practice as an occupational therapist, I had insights into many of the issues, and also knew what the dementia environments were like at that time which proved valuable to that particular project.
Has environment been overlooked in terms of its impact on people being able to live well with dementia?
I think it’s waxed and waned. At the time we did that research, which as I said was the end of the ‘80s, there was an interest in the impact of environment, and then it seemed to peter out for a while. However, there has been a revival of interest in this topic, particularly recently.
Currently, there’s lots of interest in care home environments and research in care home settings, which maps on to previous work, and particularly that of Professor Sheila Peace, who has done a lot of important research into care environments.
For dementia, there is now a great interest in how people can be enabled to live well within their local communities and homes as well as in care environments.
Your work concentrates largely on psychosocial interventions – what are these?
A psychosocial research study is a non-pharmacological study – so it doesn’t involve drugs or imaging. It involves an intervention that can be delivered in healthcare but maybe also in social care as well. Of course, a medical approach is necessary. If people are experiencing challenges, they need to be diagnosed; they need treatments. However, we need these other approaches as well; they are complementary.
Examples of such interventions for people with dementia include cognitive rehabilitation and cognitive stimulation, self-management, activity-based interventions such as Tai Chi, for example, psychotherapy and physical exercise interventions.
I am an applied researcher, so my modus operandi is to create interventions and then test them for effectiveness. It’s incredibly pragmatic research. And many of the interventions that I have been involved in creating and testing have come from my occupational therapy background.
In the past, I’ve looked at a variety of different aspects like the design of environments, for example how we can redesign assistive technology for the bathroom to be inclusive and attractive.
I have been involved in research looking at how intervention prevents ill health and decline and can assist people to live well for longer. These have included befriending interventions to try and prevent loneliness and isolation in older adults, how technology can support people to manage long-term health conditions and also research into interventions specifically for people with dementia.
My research is ultimately about helping people to live well in later life with whatever health challenges they have and about helping them to get the most out of life.
Is there anything that has stood out for you from the dementia research projects you have been involved in?
All of the dementia studies I have been involved in have been challenging and in particular, those involving interventions for people in the early stages of the condition. This can be for a number of reasons; for example, when recruiting to these studies, it is essential to recognise that people who are post-diagnosis can be quite traumatised, and it can be difficult to recruit people at that stage. They may not want the intervention or not feel ready to take part.
Wide-scale use of post-diagnostic interventions in dementia is quite new because until fairly recently people were diagnosed, but interventions tended not to be offered through health services until later on in the dementia journey.
So there are a lot of challenges with whether we are offering people what they want, and how we offer it – and also there are issues around the decisions that people take regarding whether they are going to engage or not in a particular study.
There are issues to look at regarding the amount of time that is required to really engage with people with this highly complex condition, and whether the health service can accommodate that.
There are longitudinal dementia studies in progress; for example, the IDEAL project being led by Professor Linda Clare at the University of Exeter, who is looking at diagnosis with people and their experiences and changing needs over time.
The psychosocial dementia research landscape is still relatively new. So whatever we learn is really valuable from these studies – and there is a lot to learn yet.
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How do the findings then feed back into the wider dementia space?
There are messages for policymakers and services, and the way services need to change to meet needs at all stages of the dementia journey. As I’ve said, services are now being asked to provide interventions for people post-diagnosis, which they are finding challenging because this is new territory. Staff aren’t necessarily trained to provide such interventions, so we need to inform services of our research findings to assist them with this new requirement.
The University of Bradford’s centre for applied dementia studies is where the notion of person-centred care and dementia first started with Professor Tom Kitwood in the 1990s – and that legacy continues.
At Bradford, we’re solid on the philosophy of person-centred care, and more recently citizenship and dementia. We are moving rapidly from person-centred notions which are primarily focussed on people being cared for – to hearing the voice of people, and assisting them to continue to contribute to society.
At Bradford in particular, and in other centres, we are listening to the voice of people with dementia, and we are involving them in our work. We’ve got a group called Experts by Experience, which is a group of people living with dementia – both people with a diagnosis and their supporters – that engage with us and assist us with our work, and that’s really very important.
We always feed the findings from research back to people living with dementia and get their views on what we have learnt and how it can be taken forward.
What is the intervention you would like to research the most?
It’s not an intervention as such, but I feel quite strongly that one of the many reasons why randomised control trials of psychosocial dementia research, and of other psychosocial interventions, not just for people with dementia, are challenging, are concerned with how we measure the outcomes of the intervention.
Particularly in dementia, the outcome measures we’ve got aren’t really fit for purpose – in particular, if we start thinking about how people live well with dementia which is difficult to measure.
Living well is a bit of a ‘catch-all’. Underneath that, there are different understandings and interpretations of what that means, but I think we should be able to measure different issues and aspects – one example would be how to self-manage the symptoms of dementia.
There is definitely a need to develop new outcome measures, which take account of people living well rather than having a negative approach; measuring decline. We also should take account of people not being able to remember. It’s a bit ridiculous really when you think about it – the traditional outcome measures ask people to recall, but we’re working with people that are having problems with recall.
This interview was part of a series brought to you by Elder. If you are looking for a live-in carer in the UK, Elder can help.
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