First impressions of public involvement in dementia research

Earlier this year, I had the opportunity to attend a Research Network event, which marked the final celebration of it's 20th anniversary and was the biggest yet. The event provided the opportunity to hear from those who are the reason why Alzheimer's Society supports  research.

Leading the way

When the Network was set up in 1999, Alzheimer's Society's approach was revolutionary. The Society was among the first to listen to the personal experiences of those with dementia, and former and current carers, and involve them at every stage of the research process.

Having recently started as a volunteer in the research team, I have read and heard a lot about the value of the Research Network. However, attending the event, and speaking to the volunteers themselves, showed me a different perspective and brought the concept to life.

Best possible care…comes from academic research and lived experiences.

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Public involvement in research

The event undoubtedly showed me the importance of the volunteers for dementia research. By sharing their experiences, they bring common themes to attention and highlight priorities for research. At the same time, each volunteer brings a unique story, ensuring that research reflects all 850,000 people affected by dementia.

Each volunteer is inspired to contribute their experiences.

The impact of the volunteers on the researchers themselves also stood out to me. Researchers may spend their entire career understanding one tiny, although significant, aspect of dementia. The Research Network volunteers remind researchers of the bigger picture, the vital role that research is playing and who they are doing their research for.

What’s in it for volunteers?

It was also wonderful to see how much people with dementia can get out of being a volunteer for the Network. Contributing their opinion gives them a sense of purpose and hope, and many say it even improves the functioning of their brain.

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It's a two-way street…research can show us how we can change our lives…we can then go and share your research.

This two-way communication between researchers and people affected by dementia is undoubtedly essential to drive research forward.

Since attending the event and seeing the positive impact of the Network both on the volunteers themselves, and on dementia research, I find it difficult to understand why anyone would choose not to involve the public in their research.