Turning up the volume of the patient voice in dementia research

dementia research

Dr James Pickett, Head of Research at Alzheimer’s Society presents the case for turning up the volume of the patient voice when it comes

There are 850,000 people living with dementia in the UK alone and this number is set to rise to one million by 2021. Of the top ten causes of death, dementia is the only one we can’t cure, prevent or even slow down. 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.

Over the past twenty years, increasing value has been placed on the lived experience of patients and the public in research. More and more research now includes patient and public involvement (PPI). While many agree that morally and ethically people with lived
experience of a condition should be involved in research, there are still challenges to supporting involvement and best practice guidelines are not yet agreed.

Changing research

Today, Alzheimer’s Society is working tirelessly to challenge perceptions around dementia. We have pioneered the active involvement of people affected by dementia through our Research Network since 1999. Our volunteers have been vital in some of the biggest research achievements, including campaigning for NICE to widen access to treatments, reducing antipsychotic use, and lobbying for more research into improving care. People with lived experience are at the forefront of our research.

We have seen through our own experience, and the experience of other researchers, the impact of involving people affected by dementia. We published our own report of the unique contribution and benefits of PPI. We also co-edited an edition of ‘Dementia: the
International Journal of Social Research and Practice’ that shares just a few of the many different ways the voice of people with dementia supports research. The journal includes 11 articles co-authored by researchers and people affected by dementia, many of whom are
our own Research Network volunteers. We are moving the conversation about PPI forward
from ‘proving’ why it should be done to ‘improving’ how we can do it. Although PPI is clearly valuable, it is by no means perfect and can present challenges for researchers, volunteers and funders.

Paving the way

We want anyone with experience of dementia to feel empowered to play their part in research. We want researchers to understand how to get the best out of working with people affected by dementia for their research. More than just avoiding tokenistic involvement, we want to help maximise the impact of PPI. We understand that PPI is not a one size fits all approach, it must be tailored to the needs of the project, the researcher and the volunteer. We need to give researchers and people affected by dementia the tools
work together to beat dementia.

PPI is integral to every single research project we fund at Alzheimer’s Society, which encompasses biomedical research, research into dementia care and health services.
All of our Research Network volunteers have a unique experience they bring to the research, and we support volunteers with additional training on the basics of dementia science and research methods to help them to feel comfortable in conversations with
researchers. For our researchers, we offer support with input from people with lived experience of dementia at any stage of their research, even research we aren’t funding directly. Our philosophy is that people with dementia and carers are able to contribute
a unique insight into every stage of the research process.

PPI in research continues to evolve and improve to better meet the needs of research. Alzheimer’s Society will continue to embed PPI in dementia research work with researchers to maximise its potential and involve as many people as we can in dementia research.
It is only through research that we can understand what causes dementia, develop effective treatments, improve care and one day find a cure. But for research to progress, we need more people to take part. Alzheimer’s Society is a partner in Join Dementia
Research, a nationwide service that allows people to register their interest in participating in dementia research and be matched to suitable studies. Whether you want to take part in research or get more involved in the research process, we need everyone to unite and help research to beat dementia.

Dr James Pickett
Head of Research
Alzheimer’s Society
Tel: +44 (0)330 333 0804


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