How can you find ways to take part in dementia research?

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.’

Stan Limbert

Stan.

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!’ 

Something worthwhile 

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.

Del Garland and his wife Maureen

Del and Maureen.

Feeling empowered 

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.’ 

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9 comments

I have a Son ages 57 who has (middle dementure. I am very interested to join Dementure Research for me and him. He really does not like having this condition and it breaks my heart to see him like this.

Hi Patricia,

We're sorry to hear about your son, that sounds like a really difficult situation to be in. Please know that you can always call our support line on 0333 150 3456 if you need support.

If you would like to hear more about how to take part in research, you can register your interest and one of our trained advisors will contact you to provide more information on how to get involved. You can find out more here: https://www.alzheimers.org.uk/research/take-part-dementia-research

We hope this helps, Patricia. 

Alzheimer's Society website team

I have just been diagnosed with DLB dementia

Hi Neil,

We're sorry to hear this - please know that you aren't alone and we're here for you.

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support. Find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/get-support/dementia-support-line

We hope this helps, Neil.

Alzheimer's Society website team

I would like to take part in all study that is available and join Stan in and hope we can Find a better cure for this illness that take your memory away

Hi Richard,

It's wonderful to hear you are interested in taking part in dementia research studies. 'Join Dementia Research' is an easy way to register your interest.

The studies that are listed on the service are a mixture of clinical trials of new drugs and other studies, including improving understanding of care practice or looking into links between lifestyle and dementia risk.

There are a few ways you can choose to register to Join Dementia Research:

1. Sign up online via the Join Dementia Research website: https://www.joindementiaresearch.nihr.ac.uk/

2. Call our Dementia Connect support line on 0333 150 3456 and say you are interested in Join Dementia Research. Our trained advisers will then contact you and guide you through the registration process. (More details on the support line, and other methods of contact, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line)

3. Request a call back from Join Dementia Research if you would like to register by phone: https://www.joindementiaresearch.nihr.ac.uk/register-by-phone

We hope this is useful for now, Richard. Please do call 0333 150 3456 for more information on taking part in dementia research.

Alzheimer's Society website team

my husband was diagnosed in 2019 as having mild dementia type symptoms, in 2022 he has difficulty in putting sentences together, but seems to understand questions, TAKES TIME, cared for at home by me 24/7, recently we tried playing a game of chess, he did quite well, need proper diagnosis, help, research is ok by us. not on medication 81 years old, father died at 99 with Dementia

I'm in the USA.Am I eligible to join

Hi Julia,

Thanks for your interest.

If you're in the USA, we'd suggest looking at what organisations may be doing locally. Alzheimer's Association's TrialMatch may be a good place to search: https://www.alz.org/alzheimers-dementia/research_progress/clinical-tria…

We hope this helps,

Alzheimer's Society web team