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TravelGuides – ‘I would want to plan’: readers on whether they would be tested to predict dementia | Dementia

TravelGuides – ‘I would want to plan’: readers on whether they would be tested to predict dementia | Dementia

A five-minute test that could predict your risk of developing Alzheimer’s disease or another type of dementia in up to 15 years’ time is beginning NHS trials.

There are more than 850,000 people in the UK who have dementia, and the condition affects one in 14 people over the age of 65 and one in six people over 80.

Five Guardian readers share their reasons on whether they would or would not take the test, which is being developed by the British medical company Cognetivity Neurosciences.

‘I would want to plan everything’

Maria Paula Escobar.
Maria Paula Escobar. Photograph: Cristina Uribe Villa

Maria Paula Escobar, a 49-year-old lecturer from North Somerset, says she would take the test to try to avoid the indignity her father experienced after he was diagnosed with Alzheimer’s in 2007.

“My father saw his mother becoming very ill with Alzheimer’s and he witnessed his older brother suffering with the disease,” she says. “But I don’t know if he was aware of his own diagnosis. When he realised that he had lost the ability to play the piano, that gave him so much sorrow. He wouldn’t have coped with the knowledge that he needed to be spoon fed.”

Escobar, who is originally from Colombia, says her father’s death in Bogotá, aged 91, was beautiful because he appeared to recognise her. “He died looking into my eyes. But I know he would have preferred to be mentally fully present. You lose your loved one twice and it is a slow agony.

“I live off my intellect. If I am going to lose it, I would want to plan and have everything sorted, rather than leave the task to my two children. I’d like to spare them the sorrow.”

‘You very quickly lose control over your life’

Alison, 69, a retired lawyer from London, whose 96-year-old mother has Alzheimer’s and vascular dementia, is also in favour of taking the test so she could make plans while still mentally competent.

Her mother was diagnosed soon after moving in with her. “I realised that she’d got very rigid routines, which I think had kept her going,” she says. “She’d struggle to comprehend how the television turned off or how the oven turned on. She’s now in a home and her life is miserable. She sits and stares into space. She hasn’t been able to read for two or three years now because she can’t concentrate. This is a woman who decided 10 years ago that she was going to read the complete works of Shakespeare and did.”

Alison says that if the test identified her as being at high risk of dementia, it would also give her husband and two children more choices “rather than suddenly being dragged into an emergency situation”.

“If you don’t get an early diagnosis you end up not being able to plan things yourself or you don’t understanding what is happening to you and lose control over your life,” she says. “Also, it might stop me worrying that I have dementia every time I forget something.”

‘If we can detect early, maybe there will be more effective treatment’

Nikita, 22, a risk intelligence analyst from Dorset, whose mother has early onset-Alzheimer’s, wants to take the test because she hopes that early detection may improve treatments for the condition.

“My mother got ill very quickly and has deteriorated fast, so I would be interested to know the chances are of me also getting it,” she says. “I’m terrified that I might end up the same way. If we can detect it early, maybe it will help to find a more effective treatment.”

Her mother, a 58-year-old former riding groom, was diagnosed a year ago after suffering a head injury. Nikita, who moved back in with her parents during lockdown, has witnessed her mother’s rapid cognitive decline.

“At first is was just difficulty with trivial things really, like telling the time, or not being able to put the washing machine on,” she says. “Now I do everything for her: get her up in the morning, get her breakfast, do all the housework, make sure she knows what clothes to wear.”

The family is currently trying to find a home carer to come in twice a week. “My dad does a lot when he is home but he’s not in the best of health. She’s quite hostile towards us because I think she’s quite embarrassed about everything. Her medication is not helping at all.”

‘Why put yourself through years of worry?’

Peter, 75, a retired engineer from Cheshire, spent six years caring for his wife at home after she was diagnosed with Alzheimer’s aged 62, until medical professionals told him he was on the verge of a nervous breakdown with the strain. After she went into a nursing home, he visited her every day until her recent death. “It was heartbreaking. She’d cry when I left.”

Despite his experience, he believes a test for the disease may not be helpful. He says his wife was full of anxiety once she was diagnosed, and concerned about the impact it would have on both of them. “She got very stressed out and worried about things, including that I might leave her,” he says. “All I could do was try to reassure her that I wouldn’t. It was very distressing.”

As there is no cure for dementia, Peter also questions the point of such a test. “It’s one thing getting a test for something like cancer that’s treatable. But why put yourself through 10 or 15 years of worry for something that you might not get anyway? I think it’s a really cruel thing to do.”

‘People could think that you’ve got early-onset dementia’

James, 47, an IT consultant from south-west London, worries that taking a test could have serious financial implications, affecting your ability to get insurance or a mortgage.

“I think there’s the risk of an insurer asking, ‘Have you ever taken a dementia test?’ and that adversely affecting your premium,” says James, who has a close family member living with dementia.

“People could think that you may have early-onset dementia because you took the test,” he adds. “Regardless of the outcome, you’re not going to get a loan. The mortgage company will say, ‘Oh well, you probably won’t be working in 15 years’ time, we’re not going to give you a loan’.

“I’m not really anti doing these kinds of tests. But I think that the impact of what’s going to happen because you took it is something people don’t think about, and they really should.”

TravelGuides – ‘I would want to plan’: readers on whether they would be tested to predict dementia | Dementia

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