Date: 22 May 2019
Growing numbers of people across Kent, Surrey and Sussex are getting involved in dementia research. So far over 3,000 people from across Kent, Surrey and Sussex have volunteered to help improve the lives of people with dementia and their families through the nationwide service Join Dementia Research. In March 2019 Join Dementia Research reached a milestone of over 40,000 people registering as volunteers from across the country. This is encouraging news for the 66,000 – and rapidly rising – number of people across the region who are living with dementia. However, more volunteers are still needed.
It is only through research that medical professionals can fully understand what causes dementia and help them to develop effective treatments to improve care – and one day find a cure.
Research volunteers – who may or may not have dementia – play an essential role in helping researchers and doctors to understand dementia and test potential new treatments. One local volunteer, Fiona McGhee from Lewes in East Sussex, recognises the importance of dementia research. Her mother was diagnosed with Alzheimer’s disease in 2012 at the age of 80 and they have both been actively involved in research studies since.
Fiona McGhee said: “Dementia research is so important to me because of what I have been through with my mother. I jumped at the opportunity to help. If we can get enough research into dementia the disease may be stopped in its tracks.
“My mother really enjoys it when people come to visit her and the researchers are wonderful with her. I would happily volunteer my mother and I for any dementia research that we are suitable for as people have a lot to learn from her as a person with dementia and from me as someone who cares for someone with dementia.”
Join Dementia Research is a nationwide online and telephone service that can help people to take part in dementia research studies. It provides a single point where people can make themselves known to researchers recruiting to research studies. The service is designed to match people with studies based on their health information and research interests. To find out more information and sign up visit www.joindementiaresearch.nihr.ac.uk
Dr Nicolas Farina, Research Fellow in Dementia at the Centre for Dementia Studies, part of Brighton and Sussex Medical School has worked with volunteers who have taken part in dementia research via Join Dementia Research.
Dr Farina said: “Join Dementia Research empowers people with dementia and their carers to choose research that is most appropriate and of interest to them and it allows researchers to reach individuals that we may miss through other routes.”
By signing up to the Join Dementia Research service people give permission for researchers to contact them with details of studies in their area and match their profile. People can then decide if they would like to participate in those studies on a case by case basis and can opt-out at any time.
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