Maureen and Derek: how a diagnosis led to them taking part in research
Maureen and Derek signed up to Join Dementia Research after Maureen was diagnosed with dementia in 2018. By participating in research, they have matched to through the service, they have picked up tips on managing the condition and have even made some new friends in the process!
Health and diagnosis
Maureen and Derek who have been together for over forty years met at work in 1976 when they both worked in I.T. They have two children and two grandchildren.
Three years ago, when Maureen visited her local GP with depression, other symptoms were picked up. She was referred and after further investigations, Maureen was diagnosed with Alzheimer’s disease at the age of 66.
The retired couple first became aware of Join Dementia Research and the opportunity to take part in research when they went along to a support group set up by the Alzheimer’s Society. They were keen to take part to help enhance understanding about dementia, not just for their benefit but for future generations too.
They both signed up and have since taken part in several online studies, one of these was an anonymous study that could be done from the comfort of their own home. It included a questionnaire and a set of brief puzzles to measure thinking abilities.
“It was extremely easy to take part in the online studies as we both still regularly use computers. It was great to be able to make a difference to the understanding of dementia and contribute from our own home, particularly while we’ve been living with COVID restrictions.”
Maureen and Derek – Volunteers
How did you get involved in Join Dementia Research?
We first got involved with Join Dementia Research as a result of going to an Alzheimer’s Society meeting where we heard all about it. Maureen had been officially diagnosed in 2018, although she had it for many years before that but we probably didn’t know about. We both talked about it and thought that it would be nice to help others as we go down this path.
Why is it important for you to take part in dementia research?
We felt it was quite important to get involved because the journey is all different. Or so we had been led to understand and therefore we wanted to understand more about what was going on and we could do this in a way that would help others in the future.
What has your involvement been so far?
The kind of studies we’ve been taking part in have been quite varied. We initially started off with questionnaires, surveys, that kind of thing being done online because of the restrictions in place at the time. But then we signed up for something a little bit more detailed and we looked particularly at one called Pathfinder, which was very helpful in that not only did it help us to introduce some methods to help our situation, but also helped us to pass it on to other people and of course, again, the information that’s gleaned from this trial is going to be good for people in the future.
Is there anything you have found particularly helpful?
The online research has helped me a lot with the trouble that I have with dementia. I found it very useful. I guess one of the things that has been particularly important is learning about aids that we can use such as using Alexa and dementia clocks. Thank you Alexa!
Another benefit from the studies particularly that we found is that it was suggested that Maureen reads more because she likes doing that to relax, and she suffers a lot from anxiety and that has been a major help to us. And now, of course, it’s something that can be taught of others down the line, which will help them.
Are there any other benefits to being involved?
There has been some unexpected benefits out of the research in that we’ve had advice to get in touch with people, and we do a lot more with the Alzheimer’s Society and we’ve met friends through them and we’ll have an occasional coffee mornings or coffee afternoons, and it’s just basically great to be able to speak to other people about the situation we’re all in.
How easy is it to sign up?
It’s really easy to get involved now we were lucky to hear through the Alzheimer’s Society. So the person that introduced us there helped us, but we can phone up. You can go online and the good thing is, once you’ve registered, which are really recommend, everybody does in this situation. You can choose what you want to do you don’t have to do everything that’s thrown your way you’ll be matched up and you just pick and choose if you feel uncomfortable don’t do it there’s no problems.
Sign up for join Dementia Research today www.joindementiaresearch.nihr.ac.uk
Developed in partnership:
NIHR | National Institute for Health Research
Alzheimer Scotland | Action on Dementia
Alzheimer’s Research UK | Make breakthroughs possible
Alzheimer’s Society | United Against Dementia
More recently the couple has taken part in the PATHFINDER study which aims to evaluate a form of talking therapy called Problem Adaptation Therapy. This research is based on the principle that problem-solving therapy has been reported to be helpful in altering mood states for the person diagnosed with dementia.
Research via Zoom!
Maureen and Derek met a researcher on Zoom for a number of sessions. Derek said:
“The researcher was very easy to deal with and made us feel at ease straight away.”
The researcher helped to identify the difficulties Maureen was facing in her everyday life which included loss of memory for recent events, repeating herself and finding it hard to make day to day decisions. Small changes to the home environment such as using ‘Alexa’ to remind her to take medication, or popping instructions on the wall in the kitchen were suggested.
Following the sessions, Maureen and Derek completed some online questionnaires to see if the suggestions had helped and provided feedback to the research team.
The study is currently open to anyone over 50 in the UK with a diagnosis of mild to moderate Alzheimer’s Disease (AD) or mixed AD and vascular dementia and symptoms of depression. The study is open until 30 June 2022 and is recruiting in England and Wales.
(You can find out if you match this study by logging into your Join Dementia Research account.)
Making new connections
Taking part in research has not only enabled Derek and Maureen to improve their own management of the condition, but it has also provided an unexpected benefit in the form of new friendships with other people who are experiencing the same challenges.
As part of Maureen and Derek’s journey of discovering ways to get involved in research and how they could access support, they attended events being held by the Alzheimer’s Society, a charity partner of Join Dementia Research.
At one of the face-to-face face support groups run by Alzheimer’s Society before lockdown, Maureen and Derek were able to meet others living with dementia. They have formed several friendships and been able to enjoy coffee and cake in the garden with another couple when restrictions have allowed.
These friendships have been important during the different stages of lockdown and have continued via Facetime and over the telephone and have been a bonus to taking part.