5. Setting the care research agenda
James Pickett, Head of Research at Alzheimer’s Society, explains how we’ve led an ambitious piece of work to advance research into quality of life for people living with dementia, as well as for their families and carers.
It has been widely publicised that the amount of investment going into dementia research has increased in recent years, but to date there has been much more work aiming to find a cure for dementia rather than to improve the lives of people living with dementia today. For example, a global database of dementia research projects finds only 3.4% of the 5,837 research projects added over the last three years address care, support and health economics of dementia. That’s fewer than 200 projects worldwide.
One reason for the disparity may be the high political attention given to finding a cure. In 2013, G7 nations set out the ambition to identify a cure or a disease-modifying therapy for dementia by 2025. This has driven the allocation of funding and resources towards research strategies that maximise the chances of this becoming a reality.
Alzheimer’s Society has long championed the importance of striking a balance between ‘cure’ and ‘care’ research. So, we set out to develop additional ambitions to describe what may be achieved in other areas – for instance in prevention research, but also diagnosis, intervention and care. We worked with a group of leading researchers, clinicians and people with dementia to set five additional goals:
- Prevent future cases of dementia through increasing knowledge of risk and protective factors.
- Maximise the benefits to people living with dementia and their families when seeking and receiving a diagnosis of dementia.
- Improve quality of life for people affected by dementia, by promoting functional capabilities and independence, while preventing and treating negative consequences of dementia.
- Enable the dementia workforce to improve practice and skills by increasing evidence to inform changes in practice and culture.
- Optimise the quality and inclusivity of health and social care systems that support people affected by dementia.
For each of these goals, we developed a specific set of recommendations about the type of research that was needed to deliver them. For instance, we came up with 10 recommendations for the third goal.
Some of these recommendations concentrate on gaps in our knowledge, such as developing effective ways to manage and treat symptoms like depression, anxiety and pain. Others focus on particular stages of dementia, including the need to focus on more advanced dementia.
Some of our recommendations look at ways to improve the research process or the ways studies are designed. For example, many studies that involve carers narrowly assume this means a spouse or partner. We need to develop new methods to study the more complex dynamics of carer relationships, which in turn will make it easier for more people to be involved in research.
In total, we came up with 30 new recommendations and an action plan suggesting how to implement them. Together these form a roadmap for the future of care research that will be published at the end of 2018.
Although it is a useful first step, a roadmap document won’t transform dementia research on its own. Now the hard work starts. We will work with researchers, funders and partners to turn the recommendations into a reality.