“Alzheimer’s is like going down a spiral staircase. But if enough people take part in research, we will beat it.”
For many people, retirement is something to look forward to. A time to live a nice life, well-earned after years of hard work. But sadly, for couples like Janet and Andy Gumbrill, a diagnosis of young-onset Alzheimer’s disease, can turn all those plans on their head.
Childhood sweethearts and married since 1978, the couple live in Hove, East Sussex and have two daughters, Hannah, 30 and Rachel, 27.
In 2013, Janet Gumbrill was working part-time as a Life Policy Claims Assessor and Andy was a small maintenance builder, employing a team of six and managing a small portfolio of properties. Janet had been signed off work for nine months with what was assumed to be stress. There had been a few signs at home that Janet wasn’t quite her usual self, such as mistakes in her bookkeeping for husband Andy’s business, but again, this was all put down to stress. It was on a family holiday to South Africa at Christmas in 2012 that they notice more things that didn’t seem right.
On their return, Andy and Janet booked an appointment with their GP and got referred for further tests. When the results came in they received the life-changing news that Janet had young-onset Alzheimer’s disease, aged just 55.
Andy recalls that consultation:
“That moment is still so vivid in my head. The doctor was sitting looking at the screen and he turned in his chair and told us Janet had Alzheimer’s. I don’t recall what they said after that. I know we just went outside and cried.”
“Of course since then everything has changed. We had dreams that we’d soon retire, had plans to see the world and have a really nice life. Instead, I’ve retired to look after Janet full time. We have holidays but Janet’s apprehensive about going these days. Her house is her comfort zone. Even on a shopping trip to Sainsbury’s I have to make sure she stays nearby.”
It was daughters Hannah and Rachel who first suggested the idea of taking part in clinical research. After hearing of their mother’s diagnosis they looked into all avenues for their mum, trying to see what treatments might be out there for her to try. They came across a study looking for people to try a new drug looking to slow disease progression in people with Alzheimer’s disease.
In July 2014, Janet and Andy decided to take part. The study involved taking a tablet twice a day, once in the morning and once in the afternoon. Then once a month Janet and Andy would visit the Dementia Research Unit in Crowborough for a morning of tests.
Andy describes the experience:
“We felt so welcome every time, and really looked forward to our visits. It was like a day out. The research centre felt like a home-from-home; we were even given homemade cakes! Janet would get a full “MOT”: blood tests, ECGs, MRIs… Better check-ups than anyone else her age!”
During these visits, the study team would assess Janet’s memory and thinking with cognitive tests. The couple would also take part in separate interviews with the research team to understand about how Janet’s condition was changing, for example, trying to understand her ability to dress herself.
“We weren’t too concerned about side effects. Janet was well monitored and if there had been anything we’d have reviewed whether or not to continue. It did become a bit upsetting because as time went on Janet recognised that her condition was worsening when she couldn’t answer some of the questions. But I’d still recommend anyone to get involved.”
Sadly the trial ended early because it was not giving the positive outcome hoped for. Yet Andy remains adamant that research is that answer in the fight against dementia:
“Alzheimer’s is like going down a spiral staircase. It just varies how fast you’re going down those stairs. I do believe that we need everyone to get involved in research. It’s the only way we’re going to find new treatments that will work. So I think that anyone who has a diagnosis of dementia, at any age, should see what studies they can take part in.”