We need research to change how dementia affects people’s lives, and researchers need volunteers.
No one with any experience of dementia needs convincing about how vital it is to find the best care, treatments, prevention and even a cure.
Yet, as well as funding, dementia researchers are crying out for more people to take part in studies.
Jean Koffman, who has Alzheimer’s, says,
If very few people volunteer, then research cannot be undertaken and a cure would almost certainly never be found.
Rachael Fothergill, a research champion, agrees, ‘There is currently no cure for dementia and the health and social care support in place is severely lacking. Without research, that never gets better.’
Join Dementia Research means you can hear about studies that are looking for volunteers like you, making it easier than ever to take part.
For yourself and others
Jean and her husband Erick both registered with Join Dementia Research by calling the helpdesk run by Alzheimer’s Society.
Jean is now part of a drug trial called EVOKE. This is finding out whether an existing diabetes medicine could help people with Alzheimer’s.
‘I joined the EVOKE trial about nine months ago,’ says Jean, ‘and have found everybody involved helpful and friendly.’
It gives Jean the feeling that ‘maybe you are doing something good, not only for yourself but possibly for future generations.’
Rachael says benefits can also be surprisingly immediate.
Taking part could mean being able to attend a support group, talking therapy or having access to new medications that might help with symptoms.
‘People affected by dementia often feel alone and like there is nothing you can do. Research offers hope, purpose and access to a community of people just like you.’
Research for everyone
Sharon Boulter and Mary Keddy run our Join Dementia Research helpdesk, answering people’s questions and making registration easy.
‘Research is for everyone – with or without dementia, at any age over 18,’ says Sharon.
Volunteering for research is the only way we’re going to be able to change the future of dementia.
If you don’t have dementia, you could take part in a comparison group, or researchers might want your perspective as a carer, relative or friend.
Mary says, ‘It’s vital that those who care and provide support for people with dementia also share their lived experiences to improve support services.’
Rachael adds that even people with advanced dementia may be able to take part.
‘Whilst for some studies you do have to be able to consent for yourself,’ she says, ‘for others, a family member or health professional may be able to consent on your behalf.’
Easy and rewarding
Rachael says that drug studies are just one aspect of dementia research.
‘Research could be a questionnaire, an interview, it might be a support group, an online resource, access to a therapy intervention or exercise programmes,’ she says.
‘It might be to improve policy, care, support, relationships or awareness of dementia.
Join Dementia Research is fabulous for allowing people to view what they could take part in, and picking and choosing what works for them at each stage of the journey.
‘In my role, I have seen that taking part in their first study can be a bit daunting for people but, once they take part, they rarely don’t get involved in another project – they get the research bug!’
Jean says, ‘I would like to underline how easy and rewarding it is.
It is good to feel appreciated and that the action that you are taking is, at the very least, a minor victory over dementia.