Why more investment is needed to put people at the heart of dementia research

Colin Capper, Head of Research Development and Evaluation at Alzheimer’s Society, discusses why greater investment is needed in today’s dementia care research

Dementia is now the UK’s biggest killer, with someone developing it every three minutes. Yet decades of underfunding have left dementia research lagging far behind other health conditions. The treatments available for people with dementia don’t help to manage the symptoms for long and currently don’t work for all types of dementia.

At the same time, in the UK there are soon to be over one million people living with dementia and even more affected by dementia when you take into account informal carers and support. There’s currently no cure for dementia, so good quality care is vital for people living with the condition to maintain their wellbeing and be able to continue to do the things they enjoy.

It is only through research that we can fully understand what causes dementia, develop effective treatments, improve care and one day find a cure. But for research to truly progress, we need to hear from more people affected. At Alzheimer’s Society, we pioneer public involvement in dementia research through our Research Network. Our philosophy is that people with dementia and carers are able to contribute a unique insight into every stage of the research process, which is why they play a vital role in reviewing and monitoring all the research projects we fund. But their involvement shouldn’t stop there.

When setting broader research priorities, for us and for organisations across the world, the voice of people affected by dementia is just as important. The Dementia Statements reflect the specific things people with dementia have said are essential to their quality of life. They are grounded in International Human Rights Law and outline the rights people affected dementia have in order to live well. Crucially, one of these statements outlines that people with dementia have the right to an early and accurate diagnosis and that they should receive the appropriate care and support that they need.

It’s been five years since the leaders of the G7 nations agreed on a goal of finding a cure or disease-modifying therapy for dementia by 2025. This goal has generated a substantial wave of investment in dementia research, including the £290 million UK Dementia Research Institute, which Alzheimer’s Society is a founding funder, the $100 million global Dementia Discovery Fund and other significant increases in dementia research funding across the U.S. and Europe. In biomedical dementia research at least, there is a sense of renewed optimism and momentum towards a breakthrough in new treatments for dementia.

Sadly, there is not the same level of momentum in dementia care research. The global cost of dementia is estimated to reach $1 trillion this year, doubling to $2 trillion by 2030 – our existing social care systems are not cut out to cope with this demand, and yet less than 5% of all dementia research, globally, addresses the care and support that people with dementia vitally need. Around the world, it is imperative that focus is placed on creating a more person-centred approach to how we invest in and programme research. This would help to ensure that the quality of life for people living with dementia is improved in both the long and short-term.

To guide dementia research towards this approach and address this imbalance, Alzheimer’s Society launched a research roadmap which outlines how research ambitions for care and cure can sit side by side. Developed by a task force of researchers, policymakers and, most importantly, people with dementia, the roadmap contains five research goals that detail how care research can deliver for people living with dementia. These goals are supported by detailed recommendations and an implementation plan to improve future dementia care, intervention and prevention research:

Goal 1 Prevent future cases of dementia by increasing the knowledge of risk and protective factors.

Goal 2 – Maximise the benefits to people living with dementia and their families when seeking and receiving a diagnosis.

Goal 3 – Improve the quality of life for people affected by dementia, by promoting functional capabilities and independence, while preventing and treating the negative consequences of dementia.

Goal 4 – Enable the dementia workforce to improve practice and skills by increasing evidence to inform changes in practice and culture.

Goal 5 – Optimise the quality and inclusivity of the health and social care systems that support people affected by dementia.

These goals are not just for Alzheimer’s Society or even the research community to aim towards. They concern everyone who has a stake in dementia research, including people with dementia, health and social care professionals and those involved with public health programmes and we must work collaboratively to share expertise and resources. These goals have the potential to change millions of lives worldwide – but, as with the search for a cure, achieving them will require major political and financial commitments and global coordination.

Research will beat dementia but until the day when we find a cure, we need to be researching cause, care and prevention. As we owe it to the 850,000 people currently living in the UK with dementia to understand the condition better so that they can live better.

 

Colin Capper

Head of Research Development and Evaluation

Alzheimer’s Society

Tel: +44 (0)330 333 0804

www.alzheimers.org.uk

www.twitter.com/alzheimerssoc

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