Research assistant reveals the challenges and rewards of recruiting for dementia studies
People working in research often need tact, understanding and an ability to be sensitive and discreet.
This is certainly the case for Daniel Kelleher.
Daniel, 25, a research assistant with Humber NHS Foundation Trust, is one of a team of researchers who visits the homes of people living with dementia to see if they would be willing to participate in research. His patch covers the whole of Hull and the East Riding of Yorkshire, going as far as Bridlington in the north, Goole in the west, and Withernsea in the east.
It is a job which relies heavily on his communication skills, as well as his sense of empathy. He said:
“There are those I visit that I suspect most people wouldn’t even know had dementia, and others that have quite severe impairments. A huge part of the job is being able to recognise the different needs of the individual and adapt your approach accordingly.”
A visit begins by explaining the details of the study, and answering any questions. If the person is happy to proceed, they must then be assessed to see if he or she would be suitable for the study.
“We always have a list of criteria that the person would need to meet to be able to take part in the study. This varies between studies, but can involve things like confirming they have a formal diagnosis of a dementia, completing a short memory test, or an assessment of their capacity to make informed decisions, among other things. Whenever possible, we try to have a range of studies available at any given time, so that people with different needs and experiences all have the opportunity to take part in research.
“Once we’ve established that a person would be suitable for the study, we talk to them about whether they are happy to take part. If so, we would assist them to complete a consent form. At this point it’s always really important to restate that their involvement is voluntary, and that if they do decide to take part then they are free to withdraw from the study at any time. This can just put people at ease as a consent form might seem like a scary thing if you haven’t completed one before!”
Following consent, the interview would then begin. The type of interview done varies from study to study, but would typically include some kind of cognitive assessment of the person with dementia, as well as some quality of life criteria and a measure of levels of depression or anxiety and the frequency of social contact they have with others.
“We book aside plenty of time to see each person – interviews generally take about 90 minutes – and it’s about finding out how people are as much as study recruitment.
“Whenever possible, two of us go to every interview. One speaks to the family supporter in a separate room while the other speaks to the person with dementia. It just means they might feel they can speak a bit more freely if they are on their own, and ensures that everybody’s point of view is heard.”
But working with people with dementia is more than just a series of questions and assessments, as Daniel explained.
“You do form a bond with that person. You look forward to seeing them again and hope that they look forward to seeing you! Quite often, we’ve enrolled people on multiple studies because they’ve enjoyed taking part in their first one so much.”
Daniel and the team visit people in their homes but also go to memory clinics and care homes, where appropriate.
They have also made the most of community settings, such as Princess Quay shopping centre in Hull, to spread the message about dementia studies going on, additionally signposting people to Join Dementia Research.
Join Dementia Research is a partnership between NIHR, Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society. The service allows people to register their interest in participating in dementia research and to be matched to suitable studies.
The team at Humber NHS Foundation Trust is supported by the NIHR Clinical Research Network Yorkshire and Humber, which funds or part-funds some of its staff, including Daniel.
“It can be a hard job at times, as some interviews can be very emotional. It can be difficult to hear about the challenges that people with dementia and their supporters face on a daily basis, but it’s also incredibly important to know these things. Identifying these challenges can help inform research and the development of services, and sometimes we can signpost people to sources of support.”
“Despite its challenges, I really enjoy my job and we have a great team here. You meet some wonderful people and hear about the amazing lives they have led, and continue to lead. The positivity of people can be really inspiring, and it’s fascinating to learn about the strategies that people use to remain independent and live well with dementia,” added Daniel, who graduated in Psychology from the University of Glasgow in 2013.
“We think people do benefit from the contact we have with them, and that they feel better for having taken part in research. We would encourage anyone who is living with dementia, their families, friends or carers, to consider finding out more about research taking place in their region.”