Nothing about us without us

From our spring 2018 issue of Care and Cure magazine, we look at our Research Network programme and the motivation behind the volunteers.

The phrase ‘nothing about us without us’ sums up a lot about the spirit behind our Research Network.

Since it was established in 1999, the network has put people affected by dementia at the centre of everything we do in our research programme. The Research Network currently consists of 250 volunteers who actively contribute to improving Alzheimer’s Society-funded research. They include people with dementia, their carers and former carers.

Network volunteers read short summaries of research grant applications submitted to us and give their opinion on whether they think we should fund them, providing over 5,300 reviews in the past year. They also work with researchers, with 137 volunteers acting as ‘monitors’ – visiting the researchers they have been paired with and providing input into their research.

Anna Grinbergs-Saull, our Research Engagement Officer, interviewed members of the network to learn more about their motivations for taking part.

Keith said:

‘I didn’t want to be a participant in a drug trial – I didn’t feel entirely comfortable with that – but I did want to do something linked to this, so the network was an ideal way of doing it. I wanted to broaden the network to include people with dementia like myself.’

Another volunteer, Kieran, told us:

‘If research doesn’t have any practical implications, then it is research for research’s sake. Is it going to help or is it going to make a difference?’

Network volunteers said that learning more about dementia made them feel better able to cope with their own experiences of the condition, and optimistic that research will help others in the future.

Elizabeth said:

‘Just seeing the development of the research from the beginning, and how encouraging that it was actually going to fulfill its potential.'

Researchers also told us about the positive impact that the monitors have on their work. They described how this kind of contact with volunteers had changed their views on how best to conduct research and involve people affected by the condition.

Mario, a biomedical researcher, said:

‘In a single interaction the wealth of knowledge, information and feedback that you can gather is incredible as compared to other contexts.’

We encourage researchers to speak to the network at every stage of their project’s design and to involve volunteers as collaborators and equal partners.

Members of the network felt that the range of their backgrounds strengthened their contribution. Whether former school teachers, occupational therapists, engineers or homemakers, the volunteers all have skills and experience to contribute. By sharing their different perspectives, they are able to shape the research landscape to meet the needs of everyone affected by dementia.

We hope to grow the Research Network and to encourage more people with dementia to volunteer by making sure that the roles of members are accessible.

If you are interested in becoming a member of the network, visit alzheimers.org.uk/researchnetwork or call 020 7423 3603.

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