Five years of Join Dementia Research: Dale and Roger’s story
Mrs Dale Kay and her husband Professor Roger Kay are two of the 46,076 people who have signed up to Join Dementia Research since it launched across the UK five years ago.
Dale was diagnosed with Alzheimer’s disease in 2016, and Roger acts as her carer. They are proud to have taken part in research to help future generations.
Over the years Dale has drawn comfort from, and enjoyed taking part in, four research studies which will help health professionals to better understand neurodegenerative conditions and achieve improvements in their prevention, treatment and care.
“Dale and I met as law students in Guildford forty-six and a half years ago. She was very intelligent, kind, and a bit of a worrier. We were married in 1977 and had a son who is now grown up.
“We both had well-respected legal careers, with Dale focusing mainly on teaching, including lecturing at Manchester Metropolitan University and authoring law books for students.
“About six years ago, I began to notice changes in her behaviour. Whereas before she was always precise, now she was a little confused. For instance she sent flowers to her sister’s previous address.
“A couple of years later, medical checks confirmed what we had suspected for a while – Dale had Alzheimer’s. In some ways the diagnosis was a relief – at least we knew where we stood.
“We’ve been luckier than many because Dale is physically fine, and though she doesn’t talk very much anymore or initiate things really, she isn’t stressed or disoriented, and she still enjoys socialising, travelling and cultural events. But she is very impaired in terms of anything that involves cognitive input. For example she does not participate in any household tasks.
“I am her sole personal carer on a day to day basis. She does do activities with a local charity called Together Dementia Support and if I am going to be out for more than a couple of hours then Age UK offer a homecare and daycare service, which is so helpful. And I have a son, friends and neighbours who will pop in occasionally, and other friends less local who we go on holiday with or stay with.
“Because she’s usually relaxed she’s not too difficult to look after. And I was always pretty domesticated and well organised! There are times when she has switched off and doesn’t seem to hear me or understand at all. hear me, and I find those difficult. I get her up at night to go to the toilet, but I usually wake up anyway so it’s not much bother.
“Getting involved in dementia research gave us hope, and purpose, though you have to be realistic about what will happen. But given our professional backgrounds it was an easy decision. Dale was treated very well during the time she was on the clinical trial – and she got regular health checks as part of the study, which was nice.
“The advice I would give to anyone going through a similar experience is that you have to accept it, make the most of what you can, but try to find the help when you need it.”
Help celebrate five years of Join Dementia Research
We’re not asking for gifts or cards for our fifth birthday. Instead, you can help us celebrate by sending this card to someone you know who might be interested in research.
It could be a friend or family member. Approximately 34.5 million of us in the UK know somebody with dementia. Imagine the difference we could make if we all told just one person about Join Dementia Research.
Who will you send a card to? It could be someone living with dementia, a carer, a loved one, or anyone else you think should be aware.
The more people who know about Join Dementia Research and register, the more researchers can find the participants they need for their studies to reach their potential.