Maximising the potential of ‘Patient and Public Involvement’ in dementia research

How can Alzheimer’s Society support PPI for your research?

By Anna-Louise Smith, Research Engagement Manager at Alzheimer’s Society

 This week we have been focusing on patient and public involvement (PPI) in dementia research.  Alzheimer’s Society fully supports researchers and people affected by dementia working in partnerships and have seen first-hand the benefits this can have for all those involved.

However we do know there are challenges and barriers to PPI so Alzheimer’s Society is working hard to support researchers to carry out effective PPI.

The Research Network

Since 1999, Alzheimer’s Society has pioneered the active involvement of people affected by dementia in research through our award-winning Research Network. Our network is now made up of over 270 volunteers who have all been affected by dementia. Some are living with the condition, some are carers or former carers.

Each of them brings their unique experience and insight to our research programme, helping us to set our strategy and priorities, influencing what research we fund, and partnering with researchers to help in a multitude of ways including setting priorities, planning, assessing and disseminating their research. Their involvement gives us confidence that we’re funding research wisely to maximise our impact.

As the Research Engagement Manager at Alzheimer’s Society I am focussed on building on the momentum of the successes of our PPI programme. We are leaders across medical research charities in the way we facilitate and support PPI, not just for our own funded research, but also across dementia research in the UK and internationally. My role is to unite researchers and people affected by dementia to work in partnership and to support them to work in a mutually beneficial way.

Changing attitudes

In 2017 we surveyed and interviewed members of the Research Network and researchers across the UK. Our report confirms that there is overall recognition of a positive shift in researcher attitudes over time towards PPI.

Despite this progress, the online survey revealed that PPI was seen as less influential in biomedical research than in care research. The case studies, however, demonstrate that there is a place for the Research Network in biomedical research, particularly in contributing to effective communication, accessibility and defining research impact.

 What’s next for our PPI?

One key area we identified is the need to involve more people living with dementia in the Research Network as their voice is unique and crucial to understanding some of the ethical challenges in delivering dementia research.

We are working with our volunteers to create flexible roles and provide the support needed for people with later stage dementia to be involved and have their voices heard.

We are also working with dementia researchers to assess and understand what methods of involvement have the greatest impact. We’ll help researchers to identify areas of their work that would benefit most from involvement and match them with the right people who can help to shape, assess and share their research.

We will make our evidence base publicly available to support shared learning and a greater understanding of best practice in PPI in both care and biomedical research.

If you are a dementia researcher and would like to:

• Work with our PPI volunteers who have an invaluable knowledge and direct experience of dementia, contact us at researchnetwork@alzheimers.org.uk
• Find out more about working with our PPI volunteers but are not funded by Alzheimer’s Society join our ‘Research Partnerships scheme’
• Find out more about our Research Network and their impact so far.