‘Join dementia research’ helps with recruitment to all kinds of dementia research
‘Join dementia research’ helps with recruitment to a wide range of research projects, and can be used for researchers working outside of health. We spoke to Fran Allen, a Ph.D. student with The Warwick Manufacturing Group at Warwick University, about her research on home adaptations, and to Ken and Janet Allman, who have taken part in Fran’s research.
Fran is in the first year of her Ph.D., having initially worked as a physiotherapist in home-based care. She began with a small study that aimed to find out whether families affected by dementia are aware of the ways in which they can improve their living conditions, to make it easier for the person with dementia to stay at home. Fran explained,
“There’s a lot of research out there that shows that if you make improvements to the physical environment – it can help with the symptoms of dementia, and keep people out of residential care. But we don’t know if people have been accessing this information or if they are making any use of it”.
Fran’s study is asking families if they know about beneficial home adaptations, and whether it’s clear which changes would be most useful. Such changes have the potential to make a big difference, because currently two-thirds of people affected by dementia are living in their own homes.
Fran had heard about ‘Join dementia research’ through social media, but was uncertain whether her study would be eligible, because she’s not funded by the National Institute for Health Research (NIHR). Luckily, the timing was right. ‘Join dementia research’ had just expanded to include research projects outside of the NIHR portfolio. For Fran, it was then all very straightforward,
“When ‘Join dementia research’ said yes, I just filled out an application online, following the clear instructions on their website. They even gave me the wording to describe the change to my recruitment method, so it was quick and easy to obtain approval for this minor amendment from my sponsor”.
For the purposes of her study, Fran was looking to interview pairs of participants – one person with dementia and another person who lives with them – a partner or relative. Ken and Janet were one of the couples who agreed to help. Janet has been diagnosed with dementia, and has been married to Ken for 51 years. They both signed up to ‘Join dementia research’ online. Ken explained why,
“We wanted to help. If we can do our little bit to help – who knows next year they might be able to cure it. Your little bit might prove to be the important link in the chain”.
It was a simple process for them too. Ken said he went onto the ‘Join dementia research’ website and “…just filled in my profile and Jan’s profile and then sat back and waited til we were contacted”.
A number of researchers have been in touch with Ken and Janet, but the couple haven’t said yes to everyone. For example, they decided not to take part in a study in London, because it felt like too far to travel – but they were very happy to help with Fran’s study and enjoyed the experience of taking part. After Fran had explained to them what would be involved over the phone, she went to interview them both at home. Janet said,
“Fran was lovely! She asked all the questions she wanted, but we also had a bit of a laugh. We enjoyed talking to her”.
Fran has now successfully recruited the ten pairs of participants that she needed through ‘Join dementia research’. She thought there were additional benefits to the process, because as she explained,
“There’s been a really good diversity amongst the people I’ve interviewed, in terms of their age, where they live and their circumstances. That’s what I wanted, to get a variety of views. It’s probably a more diverse group of people than if I’d gone through carers’ groups, because then I’d have only recruited the types of people who go to those groups. With ‘Join dementia research’, you’ve got GPs and Dementia Clinics encouraging their patients to sign up, so it includes the people who might not have otherwise thought to volunteer”.
“I’m the only person doing dementia research here, and I haven’t got access to GPs and to hospital lists, because I’m not doing health research as such. ‘Join dementia research’ is a useful way of reaching people affected by dementia, particularly for those researchers who aren’t tapped into those networks”.
Fran was also grateful for the support she received from the ‘Join dementia research’ staff, particularly at the start. She concluded,
“Everyone has been really helpful and supportive and it was really easy to get registered. Then you have access to people who you know are already interested in research and you’ve got a lot of detail about them, so your pre-screening can be quite effective. It’s all really much more straightforward than you might think!”
Are you a dementia researcher looking for participants to recruit to your study? Please visit our Researchers’ page for relevant information.