Derek and Maureen: 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
Derek and Maureen 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 which 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.”
More recently the couple have 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 Derek and Maureen’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, Derek and Maureen 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.