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Case study: Barry and Enid: Living well with dementia

Over 870,000 people took part in research in 2018/19. This research helps improve health and social care provided by the NHS and others. It also helps advance medicine to find new cures and better treatments for future generations.

Barry and Enid's story

Barry and Enid Reeves had been married for 69 years when they took part in NHS dementia research after Enid was diagnosed with the condition.

The Oxfordshire couple volunteered for the study through Join Dementia Research, a nationwide service through which people with dementia and healthy volunteers sign up to be contacted about research studies they could take part in.

Researchers are visiting Mr and Mrs Reeves over a two year period to interview them about what helps them with Enid’s dementia and what stops them from living well. It is hoped that this will help improve the quality of NHS dementia care.

Mr Reeves said of his wife’s diagnosis: “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.

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.

Mr Reeves 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.

“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.”

Mr Reeves said of their decision to take part in research:

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.”