By Professor Linda Clare
When they told me ‘It’s only ten minutes’ I felt relieved. Fairly soon I had a set of slides about the IDEAL research programme that looked varied and interesting. They showed how our thinking about well-being and quality of life evolved over the course of the research and the co-produced resources that resulted. The slide set ended with the ten-point call to action that our ALWAYs lived experience group developed in response to the findings, included in our book ‘Living with Dementia Reconsidered’.
As the Alzheimer’s Disease International (ADI) conference approached and the time for my ten-minute plenary talk grew nearer, suddenly it didn’t seem quite so easy. I started to ask myself about the take-home message. How do you turn an eleven-year research programme on improving the experience of living with dementia that resulted in over 90 research papers, a range of online and print resources, a play and documentary film, an opera, an art exhibition and a book into a ten-minute talk and make one key point that could potentially lead to concrete changes and improvements?
Reflecting on our current DeNPRU Exeter work reviewing research evidence to support development of dementia policy as part of the implementation of the 10 Year Health Plan for England, and inspired by what I was hearing about advocacy, policy and research at the conference itself, I returned to my slides. The evening before the talk, I thought about what we had learned.
We wanted to know what would help maintain well-being and quality of life for people with dementia over time. When we started, there was no clear evidence. We found that on average, quality of life doesn’t change much over up to seven years after diagnosis, but if you look more closely at what is happening for individuals you can pick up warning signs of a drop in quality of life – these include feeling depressed, feeling bad about themselves, feeling like they are ‘not the same person’ as before, and feeling lonely. To help maintain quality of life and avoid decline, people need support for their psychological well-being and mood, support for social connections, and support for their ability to function in everyday life.
Thinking about this, it struck me that we already know a lot about how to address these challenges. This tells us what health and care services can do right now to help maintain quality of life. Rehabilitation both as a service model and as an intervention is effective in supporting functional ability, enabling people to continue engaging in activities and participating in their own contexts and communities. Psychological therapies can help with depression and low self-esteem. Providing social activities and facilitating social connections reduces isolation and loneliness and creates enjoyment, friendship and a sense of normality. Of course, there is more work to do if we want to optimise the benefits of these three approaches and ensure equal access, but taken together, they provide a core service offer that should be available to everyone living with dementia. I had my key take-home message – this is the change we need to see.
My talk followed Dr Andrew Budson from the VA Boston Health Care System presenting on making amyloid-targeting therapies available to veterans. I was followed in turn by Catherine Hall, CEO of Alzheimer’s New Zealand, talking about uniting service data with advocacy to create change. Before the session, the three of us speculated on why such diverse topics had been put together. The answer came during the Q&A period. Paola Barbarino, the impactful outgoing CEO of ADI, told the audience it was to emphasise that all these potential solutions – pharmacological, rehabilitative and psychosocial, and evidence-informed advocacy – are needed and must work together in an integrated approach.