4. Elaine Beardsley-Turton
Becoming a Research Network Volunteer
I became a Research Network Volunteer in 2014 after my husband was diagnosed with frontotemporal dementia. Being a volunteer has been flexible around my care commitments, which have inevitably changed over the years. Initially, I did my lay reviewing after work in the evenings or at weekends. As my husband’s health deteriorated I gave up full time work and now have a little more time to devote to the network.
Research Network Activities
Initially I attended an introductory training day in London and a year later followed this with a training day designed for new monitors. The opportunity to receive training and meet some of the people who coordinate the work of Research Volunteers was key. I now feel more confident and I know which member of the Research Network team to call or contact if I need help. Training events and meetings have also brought me into contact with other carers and people living with dementia. For me, this has helped to reduce feelings of isolation and to provide a sense of purpose. Both elements are important – the technical elements about research and how to carry out a review gave me the confidence to get involved and peer support provide a sense of purpose and belonging.
In addition to lay reviewing new research applications I am currently involved in monitoring 3 research projects. These are all in and around the East Midlands making it easy for me to attend the bi-annual meetings. I also enjoy meeting with other East Midlands volunteers at our annual gathering.
'Training events and meetings have also brought me into contact with other carers and people living with dementia. For me, this has helped to reduce feelings of isolation and to provide a sense of purpose.'
Our area co-ordinator is a very inclusive, experienced volunteer and I have benefitted greatly from working alongside him. We are always on the lookout for new volunteers and I like exploring creative new ways to raise awareness and stimulate interest in the network.
One of the many highlights of being a network volunteer has been monitoring TAnDem (The Arts and Dementia) a research initiative jointly led by the Nottingham-Worcester Doctoral Training Centre. All PhD students involved in this programme are looking to improve our understanding of the impact involvement in the creative arts can have on people living with dementia and their families. I attended the first TAnDem conference last year and it was amazing to see the energy and potential that came from bringing the worlds of science and creative arts together. This programme of study hopes to find ways to unlock a better quality of life for those living with dementia. A practical endeavour whilst others strive to find a cure.
Benefits of being a Volunteer
As a volunteer, it is rewarding to see projects receive funding and to track their progress. It’s good to know that the comments we make are taken into account and used in discussion with research teams. It’s also reassuring to witness the steady increase in funding and the growing research capability facilitated by the Alzheimer’s Research network.
On a personal level, involvement in the Research Network has given me a better understanding of my husband’s condition. The rarer genetic forms of dementia can bring unexpected challenges for families living with both the practicalities of providing appropriate care and concerns about the risk that members of the wider family might also go on to develop dementia. I feel better able to support my husband and to more effectively signpost members of the family who are concerned about their own risk. In a situation like this you can feel powerless and overwhelmed, however being involved in the Research Network has allowed me to put my families lived experience to good use and to work towards a better outlook for future generations.
For anyone thinking of joining the network, I would say do it – don’t be put off by the technical language, the training will equip you with the knowledge, skills and confidence you need. Our collective experience is valuable and needs to inform the work of academics and researchers. You can help achieve this by becoming a Research Network Volunteer.