Research into dementia offers hope, and a specialist service matches volunteers to vital dementia research studies.
It’s only through research that we can understand what causes dementia, develop effective treatments, improve care and hopefully one day find a cure. To achieve this, researchers need volunteers.
Finding volunteers can be a challenge, but Join Dementia Research is a specialist service that’s helping to match people with the right studies.
Anyone aged 18 and over in the UK – whether they have dementia or not – can register to hear more about opportunities that could suit them.
The studies on offer cover treatments for dementia, reducing the risk of developing dementia, diagnosis techniques and improving quality of life after a diagnosis.
Force for change
Join Dementia Research was developed by the National Institute for Health Research in partnership with Alzheimer’s Society, Alzheimer’s Research UK and Alzheimer Scotland.
A special Society helpdesk provides information about how the service works and the sort of studies on offer, and allows people to register over the phone.
Sharon Boulter, Join Dementia Research Telephone Adviser, says people are often surprised that there is a lot more research than just medical trials.
‘Researchers are really keen to hear the thoughts and experiences of those whose lives are affected by dementia,’ she says.
‘Somebody I recently registered over the phone was delighted to be told she had already matched to four studies at the end of the registration!’
Registering with Join Dementia Research doesn’t commit you to taking part in a study, it simply means you’ll hear about opportunities that could suit you. After registering, you can also access ongoing support.
‘We continue as a point of contact,’ says Mary Keddy, Dementia Adviser Supervisor for Join Dementia Research. ‘We want people to enjoy taking part and to get the most out of the service.
‘People feel really proud to take part in research. For research to progress we need more people involved in more studies, so it’s about empowering them to be a force for change.’
Life after diagnosis
Stan Limbert in Merseyside, aged 78 with Alzheimer’s, feels a strong sense of purpose from being part of Join Dementia Research.
‘I’m getting involved rather than sitting at home, twiddling my thumbs, moaning that things aren’t being done,’ he says. ‘There’s life after diagnosis – a lot of us aren’t fragile little eggs that can break.’
Particularly worthwhile for Stan was an online cognitive stimulation study, which included a variety of activities to stimulate the mind.
‘It opened my eyes up about my short-term memory and I learned a fair bit more about myself,’ he says.
Stan strongly encourages other people with dementia to register with Join Dementia Research.
‘No two of us are alike, so the more people they can get – Lewy body dementia, frontotemporal dementia, young-onset dementia – the better it will be for others in the long run,’ he says.
‘If you have the opportunity, join it!’
Del Garland and his wife Maureen, who was diagnosed with Alzheimer’s in 2018, are both registered with Join Dementia Research.
‘Maureen was of the opinion that she’d like to help others – she’s been the driver for this,’ says Del. ‘We’re doing something worthwhile.’
The couple have taken part in several studies from home during the pandemic, including Pathfinder, where they gave feedback about some talking therapy sessions they had received.
‘It was good for us,’ says Del. ‘Just talking was useful, and we got ideas for how to do things differently, and better, like using Alexa.
‘We’d be lost without some of these projects. They help us and give us some answers.’
It was also suggested that Maureen might read more, something she has found very beneficial.
‘I needed to keep my mind going, so I started picking up books,’ she says. ‘It really does help me a lot, to get engrossed in a story.’
Maureen also values the connections she has made with others affected by dementia and the researchers running the studies.
‘It’s feeling like you’re in a team,’ she says.
Penny Foulds is Neuroscience Team Leader at MAC Clinical Research, where she oversees recruitment of volunteers for dementia research.
‘Some studies can be difficult to recruit for, because many people aren’t eligible. Sometimes, clinical trials fail because they can’t get enough people,’ she says.
‘There can be a lot of criteria that people have to meet, and Join Dementia Research allows that initial selection to be done.’
For its most recent Alzheimer’s study, MAC recruited nearly half of its participants through Join Dementia Research. Penny is currently using the service to recruit people with Parkinson’s disease dementia, dementia with Lewy bodies and mild cognitive impairment.
Penny has many personal, professional and voluntary connections to dementia, and is passionate about promoting Join Dementia Research whenever and wherever she can.
‘There are so many benefits to taking part in clinical studies,’ she says. ‘People feel empowered because they are contributing to the progression of drugs for this devastating condition.’
How can you help?
Your donation brings us closer to better diagnosis and treatment for people living with dementia.