Bristol, England, UK
Excerpt from Bristol Evening Post, 23 April 2011
‘Having an early diagnosis has been really helpful’
Hilary & Bob Cunliffe
Bristol’s Evening Post’s Suzanne Savill meets a carer who believes that early diagnosis of Alzheimer’s can make a vital difference.
The sitting room of Bob and Hilary Cunliffe’s home is warm and bright, with sunlight streaming in through the windows.
Yet Bob is wearing gloves. “He feels the cold very badly,” Hilary explains.
“It seems to be one of the side effects of his condition.”
Bob, 79, has Alzheimer’s disease. He was discovered to have the degenerative condition about 14 years ago following a brain scan.
The reason he and Hilary are living in their attractive modern home in Brentry is that they chose to move back to Bristol from Devon after Bob’s diagnosis.
“If you have an early diagnosis it helps because you can consider options such as downsizing while you are still able to cope with a move,” Hilary, 61, explains.
“Otherwise you get to a point where moving somewhere else would be too traumatic for them. When we first came from Devon to Bristol we started going to drop-in meetings arranged by the Alzheimer’s Society in Westbury-on-Trym, and four other couples started going at the same time.
“We ended up starting up our own walking group and started having coffee mornings as a social and fundraising activity, and I’ve made some good friends.
“The support officer from the Alzheimer’s Society came and visited us at home and made sure we were getting all the benefits we were entitled to, such as attendance allowance.
“I’ve worked in health care all my life, and I’ve found the system difficult to cope with. For us, the Alzheimer’s Society has been the key to a lot of the services that we are getting now.”
Following their move to Bristol, Bob was looked after solely by Hilary – who used to be a director of an NHS health trust – but as time passed he also began going on regular outings.
“I rang Care Direct – what we used to call the Social Services – about three years ago and we were offered somebody who would come to take Bob out. He’s been to the docks, the zoo, the cinema and the museum, as well as to places outside Bristol like Weston-super-Mare, Severn Beach, Portishead, and Clevedon.”
Bob also attends activities organised by the Alzheimer’s Society such as Singing for the Brain, accompanied by Hilary.
His needs have increased as time has progressed, and following an assessment about a year ago he now receives four half-day sessions, plus a one-day session of care through social services, with the care being provided by Brunel Care and Crossroads.
It has meant Hilary can get some respite from the growing demands of caring for her husband, a former quantity surveyor, who has a type of Alzheimer’s called Posterior Cortical Atrophy (PCA).
“It means the messages between the eyes and the brain don’t work so he can’t interpret what he is seeing,” Hilary says.
“Initially it was more about short-term memory and problems with getting lost. We moved back to Bristol about 11 years ago and transferred to the services here, and about six years ago he started getting difficulties with his vision.
“He got his eyes tested and was referred to the Eye Hospital. There seems to be nothing physically wrong with his eyes, but the messages from them aren’t getting to his brain.
“He finds it difficult to use cutlery, for example, and I have to tread a fine line between promoting his independence and doing things for him for safety reasons, such as holding something hot like a cup of coffee.
“You’re on alert the whole time. It’s exhausting, it’s unrelenting. I gave up my job in the end because I felt I couldn’t leave Bob by himself.
“The only person he feels comfortable with is me. If he’s away from me he will constantly be asking: ‘Where’s Hilary? Where’s Hilary?’.
“There’s also a Jekyll and Hyde side, where he can be shouting and angry. He doesn’t like it if he feels people are patronising him, but often they are trying to help him.”
Bob was 65 when he was diagnosed with Alzheimer’s. Hilary recalls: “I’d been concerned about Bob’s memory for some time, and it came to a head when he had taken the car into Exeter and couldn’t find where he had left it. He was supposed to meet me and he was an hour late, although at least he remembered where he was supposed to meet me and eventually turned up.
“We got a taxi and we had to drive around all the roads until we found the car.”
Bob had a number of tests, culminating in a brain scan which indicated Alzheimer’s.
“Having an early diagnosis has been really helpful for us. A lot of people seem to think that people with Alzheimer’s go from being fine one day to being gaga the next – it isn’t like that,” says Hilary.
“Bob was still functioning quite independently. He could still go out by himself and get on a bus.
“He was really pragmatic about it. He said: ‘I don’t feel any different so I’m going to continue living the way that I have been doing’.
“Initially I had quite a lot of bitterness. I knew we wouldn’t be able to do all the things we wanted to do, but I talked to myself and said: ‘It’s exhausting to feel angry all the time, so you’re going to have to do as much as you can for as long as you can’.
“We did sensible things like writing wills and sorting out power of attorney for Bob, and we had a lot of holidays with friends. Being able to talk about dementia has helped. It’s a much more open subject, mainly because the Alzheimer’s Society has done such a fantastic job of keeping it in the spotlight.
“It helps if you can be open about the situation with friends and family.
“I’ve known some people who didn’t even tell their own children for years, and it means there’s this enormous weight you have to carry around. Bob has never been in denial about his condition and it has always been an open subject.
“If he did get lost, he was able to say to people that he had a memory problem or had Alzheimer’s, and people were incredibly kind and helped him.
“I’ve always tried to make sure that he had some identification on him as well as a home phone number, and people are amazing.
“You wouldn’t believe the number of people who have brought him home. He’s come home in everything from police cars to lorries.”
In the UK, over a million people are expected to have dementia in 2021 and yet only 40 per cent of them will have been given a formal diagnosis, without which they cannot access drugs, advice and support.