Volunteering for the Research Network

Barbara Woodward-Carlton, Research Network volunteer Yorkshire area, comments on her experience of volunteering for the Research Network and participating in Alzheimer's Society's Research programme.

Who can become a Research Network volunteer

In 1999 a small notice appeared in the Alzheimer's Society's newsletter asking that readers consider joining a group to be known as Quality Research in Dementia (QRD) [now known as the Research Network].

One had either to have dementia, or be a carer or ex-carer of someone with dementia. As I had looked after my mother who had had Alzheimer's disease I felt I qualified, particularly as those interested were assured that they did not need specialised knowledge, to be scientifically trained, or to know how to use a computer. Their knowledge and experience of living with the illness or of looking after someone with the illness were what mattered, and still matter. The Research Network aimed to harness the expertise of the researchers with the expertise of the patients and carers. I duly applied to join and began a journey which has been truly fascinating'

The work of a Research Network volunteer

'I began the journey by attending two training days which were helpful and interesting. Thereafter, roughly each month I receive a pack of six to eight grant applications, with lay summaries, which I read, consider, grade and comment on. I really appreciate being able to comment on the projects knowing that all my comments are sent back to the applicants and thus they will always get the carer's perspective. I also appreciate having several weeks to complete the applications!'

Monitoring dementia research

'Volunteers are often invited to have further involvement with the Research Network and so it was I became a monitor on the FITS research project: 'Can enhanced care reduce the severity of behavioural symptoms, improve quality of life and reduce the need for sedative medication in people with severe dementia?' Meetings between the researchers and the monitors took place roughly every six months, sometimes in London and sometimes in Oxford, and were purposeful and friendly. I gained insight into the work of the researchers and an appreciation of the difficulties they faced. They, in their turn, gained an appreciation of what we had to offer a research project. When the results of the trial came through we were all so excited; new ways of providing training and care had been proven to work.'

Sitting on Grant Panels

'Sitting on a grant panel is another process in which Research Network volunteers can take part. These comprise three consumers together with three experts in the aspects of dementia relevant to the applicants. There are usually up to six applicants over the course of a day. Each makes a short presentation followed by questions. Again, it's a case of using your common sense while leaving the technical points to be assessed by the experts. But it's a thoroughly worthwhile way of deciding the best recipients for the Alzheimer's Society's all-too-scarce funding for research.'

 Why join the Research Network?

'I little expected when I originally asked for more information about the Research Network how involved I would become, nor how the journey would develop. I am constantly impressed by the quality of the work done by researchers, by their dedication and their passion to make life better for people with dementia and their carers; likewise by the knowledge, passion and commitment of Research Network volunteers. It has been a joy to be involved with a group like the Research Network and to know that finding the cause(s), and finding a cure or cures is nearer and that for many good quality care is already a reality.'