Taking the research journey together: Enid and Barry’s story
This article has been reproduced from the NIHR website.
An Oxfordshire couple who have been married for 69 years are taking part in NHS research into dementia after one of them was diagnosed with the condition.
Barry and Enid Reeves, both 91, are taking part in a study at Oxford Health NHS Foundation Trust to help researchers understand the experiences of people with dementia.
The couple, from Abingdon, volunteered for the study last year through Join Dementia Research, a nationwide service that enables people with and without dementia to sign up to be contacted about research studies they could take part in.
Enid was diagnosed with Alzheimer’s disease – the most common type of dementia – at Abingdon Community Hospital in 2016, aged 88.
We spoke to Barry ahead of Dementia Action Week (20 – 26 May), a national campaign to encourage people to take action and improve the lives of those living with dementia.
“It hasn’t changed who Enid is, it just means that everyday things are more difficult for her. She’s not as mobile as she used to be, so it’s not as easy for her to go on walks.
“It affects everything in her memory. Sometimes she can’t remember what we’ve done the day before, like if we’ve been out with the family.”
Taking the journey together
Barry and Enid first met aged 15 in 1942 in their hometown of Birmingham and married aged 22 in 1950. They have three children, three grandchildren and one great granddaughter.
Barry, a former mechanical engineer, said:
“I don’t think we ever worked that hard at staying together, it came quite naturally. We’ve always been very comfortable with being together.
“Although we had our own interests and lives, we’ve done a tremendous amount of things together like volunteering to help people with learning disabilities and running art classes.
“I used to play the clarinet and Enid played the violin, although she can’t do that now because of the Alzheimer’s. We don’t dwell on it and prefer to look instead at the things that we still can do.
“We’ve become closer as a consequence of her diagnosis because I have undoubtedly become her carer now. I devote quite a lot of time and energy to looking after domestic things like shopping, cooking and housekeeping as she can’t anymore.
“She’s quite good at going to bed on her own, getting up on her own, having a shower and looking after herself generally. What she can’t do is use the gas stove and things like that. She can sometimes make cups of tea, but that’s about it.”
The IDEAL-2 study
Researchers on the IDEAL-2 study visit people with dementia and their carers over a two year period to interview them about what helps them with the condition and what stops them from living well. It is hoped that this will help improve the quality of NHS dementia care.
Barry said: “We felt that any contribution we could make to improve the situation for others with dementia was a good idea.
“The study is not for our benefit particularly, we took part to help others and also to give us a structured activity to engage with.
“It’s also something to get our minds around and do. We enjoy the research nurse coming over to talk to us. If we can talk about something we’re closely affected by, then that’s great.”
The IDEAL-2 study is led by the University of Exeter, with funding from Alzheimer’s Society and support from the National Institute for Health Research (NIHR). It will be recruiting participants from dementia services in Buckinghamshire and Oxfordshire until 2023.
Dr Mary Akinola, the study’s principal investigator, said:
“To date there is no effective treatment for dementia; we are only able to treat the symptoms and the medications are only effective for a short time.
“It is essential to understand the experiences of living with dementia because we want to know how a person is affected so that we can find an effective intervention that will help their day-to-day living.
“Research is paramount in gaining this understanding and leading to the development of effective treatments, which include drug and non-drug options.”
Other dementia studies at Oxford Health NHS Foundation Trust include:
- How certain genes contribute to people developing Alzheimer’s disease.
- Trials of medications to improve memory in people with dementia.
- How support for people with the early stages of dementia can be improved.
You can see if you are eligible for dementia studies throughout the UK by logging into your Join Dementia Research account.
Not registered with Join Dementia Research? Why not sign up today?