Dementia Support Line
Research
First impressions of public involvement in dementia research
We brought together our Research Network volunteers and researchers at our recent 'Dementia Research Uncovered' event in Bristol. Jodie, our new volunteer at Alzheimer's Society, went along to find out more about Patient and Public Involvement and why it is so important.
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.
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.
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.
Stories from our Research Network
Our Research Network members support research across the UK and have shared their experiences and what it means to them.
Martin Corrick
saysI have Alzheimer's Disease and am a volunteer in a long-term trial of a drug that may be useful in fighting the disease. However, travel restrictions may severely damage our programme.
Should funding be sought for some kind of quarantine for volunteers, so that Alz research is not stopped in its tracks?
Anonymous
saysHi Martin, thanks for your comment.
We are also concerned about the impact coronavirus pandemic is having on dementia research. Some clinical trials and studies are continuing, we know many of our researchers are adapting their work where possible so it can continue. Others, sadly, have had to stop.
We hope the pandemic will not have a huge long-term effect, but it really does depend on how long it continues.
We would suggest you contact your study team to clarify if they are providing any support of this nature but in some cases this will be very costly and may not be possible.
Wishing you all the best with the trial and we hope it can continue again soon.
-
Alzheimer's Society research communications team
Alan G. Richardson
saysHello Jodie - pleased to see you on board and the article. It was a great day and being involved with Research Network is such a large part of my life now. It was good to see so many people and many more who can now call friends too. Best Wishes