Members of the general public can now register their availability to take part in dementia trials through a new service that aims to make it easier for dementia researchers to find people to take part in their studies.
Recruiting people to take part in trials can be one of the most time-consuming – and expensive – parts of any type of research. Trials are sometimes delayed and even ended because researchers can’t find enough people to make their study viable, or recruitment takes so long that funds dry up.
Last year, Professor Yun-Hee Jeon, Professor of Healthy Ageing at Sydney Nursing School, decided something must be done in Australia to make recruitment for dementia trials easier.
Dementia is a huge and growing problem in society world-wide, and with no cure, much work needs to be done to improve the lives of those living with the condition.
With the help of federal government funding, Professor Jeon established StepUp for Dementia Research, a program that connects people who want to participate in dementia-related research with researchers looking to recruit participants for their studies.
Professor Jeon, who is a leading researcher in person-centred care, reablement, and aged care workforce leadership, spoke to HelloCare about the program.
Like online dating
“It’s quite similar to an online dating service in the way that it matches people, whether they have dementia or not,” Professor Yeon explained.
“It matches people with research studies based on their characteristics. For example, we look at their age, their geographical location, and whether they have a diagnosis or not. Sometimes we look for carers.” Researchers may also be looking for people with a family history of dementia or they may want to know about the public’s perception of dementia.
“Sometimes researchers want to test new technology, or sometimes people want to know the lived experience of people living with dementia. There’s a whole range of research that covers care, treatment, diagnosis, prevention and ultimately cure,” Professor Jeon said.
Nearly half of those who sign up – 44 per cent – have a family history of dementia. About 25 per cent are carers, and 8 per cent have dementia. “Not surprisingly 76% are female,” said Professor Jeon.
The proportions of participants in similar programs around the world are similar, she said.
Recruitment to trials an issue world-wide
She said finding participants for research studies is a problem all over the world, and similar programs have been established overseas. There are three programs in operation in the United States, which have in total around 800,000 volunteers on their database. Join Dementia Research in the United Kingdom has around 45,000 members, and the Brain Research Registry in the Netherlands has 20,000 volunteers.
The Australian model is based largely on the UK process, although it has been purpose-built for Australia. StepUp currently has 800 volunteers registered on its database, and is looking to grow.
Dementia’s stigma makes recruitment more difficult
People can be reluctant to sign up for dementia trials because of the stigma surrounding the condition.
“By and large, health conditions that have more stigma attached to the condition are harder to attract (participants for) when it comes to research,” Professor Jeon said.
“If you look at cancer studies or cancer trials, or heart disease, when you do a survey you get far more responses to the survey.”
People are also busy, so StepUp aims to make the process as quick and easy as possible.
“People are very busy, and they don’t necessarily put forward their name for a study. So what we are trying to do is make the process easier for the public to express their interest.”
Less time on recruitment, means more time for research
Professor Jeon said researchers are spending precious dollars on recruiting that they should be directing to their studies.
“As a researcher working in this area for over 20 years, recruiting is one of the major costs for our funding.
“It’s a shame we put that money and effort into recruitment, when in fact we should be able to use that money for better outcomes. So that’s why we really want to make it more efficient.”
A 2014 study found that only one one in five trials finished on time. “Most of them got delayed because they couldn’t finish recruitment. Some trials you had to stop because they couldn’t actually meet the sample size”, which would have made any findings meaningless.
“So it’s a really crucial point and we are spending a lot of money… and not being able to deliver outcomes in a timely manner or some studies have to stop.”
Every person, every voice is important
Professor Jeon said there is also a gap between the public and science, making it difficult for people to see how they can contribute to new research. However, every person has an important voice, she said.
“They may be one of a thousand people putting their opinion forward, but that’s how we get our evidence,” she explained.
Playing a part in dementia research creates satisfaction
Professor Jeon said people gain great satisfaction from taking part in trials.
“We did an evaluation of StepUp and 88 per cent of our survey respondents said they recommended this to other people.
“I know from my personal experience a lot of people who have visited my own studies they feel a sense of fulfilment, because even though whatever they do might not benefit them directly they know that by being part of the study they are helping other people.”
“I think the more we talk about research and help the public understand what their contribution might look like or how the information they provide us for research can help, the better the experience for people living with dementia,” she said.
StepUp began matching volunteers with studies in September 2019, and is in the process of signing up new volunteers.
How to sign up
StepUp for Dementia Research is free, and can be accessed online, by mail, or by telephone. Anyone aged 18 and over can register, whether or not they have been diagnosed with dementia.
Registration takes between five and 15 minutes. During registration you will be asked simple questions about yourself or the person you are registering for. Questions include address, date of birth, and a brief medical history. Once you have registered, you can revisit your record and add extra information at any time.
Signing up doesn’t commit you to taking part in research, it’s simply a registering of interest.
To register, visit the StepUp for Dementia Research website a click ‘sign up’. Alternatively call the StepUp helpline on 1800 STEP 123.
Image: NemanjaMiscevic, iStock. Model is posed, stock image.