Utilising Join Dementia Research for PhD dementia studies
As a PhD student researching the impact of music on dementia, Anne-Marie Greenaway explains why she became interested in this particular area and how Join Dementia Research helps with her studies.
The beginning of a dementia research journey
Prior to starting her Masters degree in Clinical Language Sciences, Anne-Marie started to notice dementia friendly signs around her local community and it sparked an interest in her; she wondered ‘what makes something dementia friendly?’
As part of her Masters degree, she studied connected speech (spoken language in a continuous sequence) in those with dementia, this involved the analysis of secondary data. ‘People living with dementia were sharing memories from their youth, middle-aged years and recent events. The richness of their earlier memories made me want to speak to people living with dementia face-to-face and help to keep those memories secure’.
She explains: “Such was my interest that after my Masters degree, that I trained to become a dementia advisor at Andover Mind. We got referrals from GPs and memory clinics of people who’d been diagnosed with dementia and then we would assess their needs. The idea is that it was part of the dementia pathway. So people would get their diagnosis and feel a bit lost, so we would keep in touch with them and offer support. It really helped me to learn more about what it’s like to live with dementia.”
Music and dementia
“It was around that time that I came across the film Alive Inside. It featured an American researcher who was doing a study on the effect of giving MP3 players to people with progressed dementia. The effect that music has on the people in residential care homes was absolutely amazing, I just thought; I want to know more!”
Soon after that point, Anne-Marie started her PhD in biomedical engineering, but managed to combine the element of looking at music in dementia.
She explains: “Obviously I know about the singing for the brain, but I wondered if there was a way this could be used as a more targeted therapy. Anxiety and depression are common in people living with dementia, so I am researching a technology based music mediated intervention for people with dementia who experience anxiety and/or depression.
“In the lab, I play music and to gauge the mood of the person, I use eye-tracking to see what the person looks at on the screen.
We know that music can influence where someone looks, and from movie soundtracks, how intensely you feel the emotion the movie scene is trying to convey. I want to know if we develop this further to have a therapeutic effect and lift the mood of the person – a kind of ‘see good, feel good’ training approach.
Utilising Join Dementia Research for PhD dementia studies
PhD student researching the impact of music on dementia
What sparked your interest in dementia research?
I first became interested in dementia research when I saw a dementia friendly poster and I wanted to know what made something dementia friendly.
What happened next?
Following seeing the dementia friendly communities poster I decided to go on a training course about dementia and it was really eye-opening just to see how we frame questions, how we may not pause and take time for someone who might be in a queue in front of us because dementia is a hidden disability. So it was understanding the needs of others and how we can help with those needs.
What triggered your research interest in music and dementia?
We were emailed a little clip of ‘Alive Inside’ which is a piece of research where MP3 players were given to residents of a care home and they weren’t interacting with their environment very well. Once they were given the MP3 player they were able to talk to people around them and express how they felt about the music and it seemed to give access to memories from their earlier lives. I just thought this is amazing. I’d like to do some research on how we could use music to help people interact with their environment more.
Tell us about your PhD
I’m looking at a technology based music mediated intervention for anxiety and depression in Alzheimer’s disease.
Why do you work with Join Dementia Research?
I work with Join Dementia Research because I use it as a one-stop-shop for my recruitment. So that means I’m looking at people living with Alzheimer’s disease people living without a diagnosis of Alzheimer’s disease. Through the service I’ve actually recruited for three studies, they’ve all been Internet based and it’s really difficult to recruit participants, particularly when it’s an online study and I’ve had 100% of my recruitment via Join Dementia Research which is brilliant.
What’s the process for getting your study on Join Dementia Research?
I found it easy to get registered through Join Dementia Research. The initial stage was to make sure that my university had a confidentiality agreement. Once that was all set up, it was very easy to upload the details of my study, have some training about how to use the service and then the study goes live within a couple of weeks so it was really smooth and easy.
What would you say to other researchers considering using Join Dementia Research?
I would advise any researcher at any stage in their career to join up to Join Dementia Research because there’s so many different people you can recruit to your study.
Developed in partnership:
NIHR | National Institute for Health and Care Research
Alzheimer Scotland | Action on Dementia
Alzheimer’s Research UK
Alzheimer’s Society | United Against Dementia
Recruiting participants through Join Dementia Research
So far, Anne-Marie has carried out three studies as part of her PhD and 100% of the participants have come through Join Dementia Research.
She explains: “When I started my PhD, obviously I knew I wanted it to work with people with dementia, but I didn’t have any networks or contacts. I was delighted when I came across Join Dementia Research through a Google search.
“The process is fairly straightforward and because I input the eligibility criteria into the study information, I know that I am guaranteed to get the right cohort of people.
“You can even do a feasibility search which allows you to see how many volunteers match your study criteria during your study planning phase. Recruiting the right amount of participants for a study is a crucial part of research.
“Join Dementia Research has enabled me to work with volunteers based throughout the whole of the UK – something which would have been impossible for me to do on my own.
“It’s a really valuable resource because in addition to those with a diagnosis, people of all ages living without dementia are also on the platform – it’s a one-stop-shop!”
If you are a researcher and want to find out more about getting your study listed on Join Dementia Research, visit our Researchers page.