Alzheimer’s Society explains why it’s so important for people affected by dementia to get involved in research

Shared from Alzheimer's Society blog 9th July 2018

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.

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.
  • Learn more about the fight against dementia from our Research blogs.