The impact of involving people affected by dementia in research

Learn about the incredible impact of our Research Network volunteers, and how patient and public involvement (PPI) helps dementia research to progress.

People affected by dementia are at the heart of every area of our work here at Alzheimer's Society. It is especially of importance in the research we fund.

For eight years, Matt Murray has championed the involvement of people with dementia, carers and former carers in research. Here he shares the incredible impact our Network volunteers have had on dementia research so far.

Research Network volunteers and Matt Murray Members of our Research Network, pictured with Matt Murray, Research Engagement Manager (far right)

It is notoriously difficult to change how the research world works. This is especially true if, like me, you don’t have an academic background in science.

Throughout my eight years working at the Society, I have learnt that in research, evidence is crucial. There’s no disputing this. After all, you wouldn’t take a drug based only on a hunch that it might help. You’d want - and expect - a new drug to be thoroughly tested in a large number of people before it is licensed and made available.

Researchers, more than most, value the importance of evidence. Before making a change to their research, they are guaranteed to look for proof as to why they should be changing the way they work.

Changing research

Since 1999, Alzheimer’s Society has pioneered the active involvement of people affected by dementia in research. This is through our award-winning Research Network.

We are leaders across medical research charities in the way we facilitate patient and public involvement (PPI). It applies the philosophy that research is done ‘with’ or ‘by’ people affected by the condition rather than ‘about’, ‘for’ or ‘to’ people.

People with lived experience of a condition bring an expertise that is unique to the scientific expertise of researchers. More and more researchers now involve people affected by dementia in their work. This is not because funders tell them to, but because they believe that it’s the 'right thing to do'.

We support PPI not just for our own funded research, but also across dementia research in the UK and internationally.

What have our Research Network volunteers achieved so far?

Many of Alzheimer’s Society’s achievements in the research field have come directly from the input of our dedicated volunteers.

They have helped to decide what to research, how to do this and how to communicate about it afterwards.

Over the past 20 years, the Research Network has been at the forefront of making improvements. This includes campaigning for NICE to widen access to dementia treatments. They've helped to increase focus on reducing anti-psychotic use. Plus they've lobbied for more research into improving care (and implementing it into practice).

What is the evidence?

In 2017, we collected evidence to produce our first ever impact report for PPI.

We surveyed and interviewed members of the Research Network and researchers across the UK.

We have identified 5 important groups and areas that our Research Network volunteers have changed for the better. These include society, researchers, volunteers, research and Alzheimer's Society.

Watch our video to find out more about the impact of patient and public involvement

 

We now have evidence that backs up our belief. Patient and public involvement is not just the ‘right thing to do’. It allows us to confidently say where and how the Research Network is having an impact.

We want researchers and people affected by dementia to unite in partnership. Together, they can ensure the research we support will have the best chance of making a meaningful difference to people’s lives.

The Research Network is recruiting so there’s never been a better time to get involved.

Take action now - join the Research Network

  • We are looking for new Research Network volunteers. If you have personal experience of dementia (as someone living with dementia or as a personal carer), please consider applying. Alternatively, share this opportunity with someone who might be interested.
  • Unite with our Research Network. We want to support researchers across the UK to work with people affected by dementia. If you are a researcher and would like to work with the Research Network, find out more about our Research Partnerships.

2 comments

Add your own

I'm in 94th year and my wife was diagnosed in 2014. She'a now in a Care Home and at the moment quite ill. I would gladly contribute help but I doubt I could tell you anything you don't already know. I'm assuming you seek the help and the assistance of carers in Care Homes. They, after all, are in daily contact with sufferers. I wish you well. HC

Hello Howard, thank you for getting in touch.

We’ve seen that carers and people with dementia, who have direct experience of the condition, can make a unique contribution to research. Researchers might not have experience of the condition themselves and insights from people affected by dementia are invaluable. If you would like to be a volunteer, please do get in touch at [email protected] We would greatly appreciate hearing from you.

Researchers studying the care and experience of people in care homes often conduct interviews and surveys with care staff. These members of staff can have experience of the condition, it’s impact and what might be beneficial.

If you require any advice or support, our National Dementia Helpline advisors are available on 0300 222 11 22. The phone line is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm). We hope this helps.

Wishing you all the best, Howard.

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