Would you really want to know you'd get Alzheimer's?

Couple on beach

A test could indicate whether people in their 40s are more likely to develop dementia later in life, scientists say. But wouldn't many of us rather not know?

It is a devastating, heart-breaking, life-shattering condition - and one with an enormous impact not just on those who live with it, but on their loved ones too.

Dementia robs from us our memories and our ability to think - the very brain functions that shape our sense of self.

At the same time, it imposes a heavy cost on families, who can only watch as the person they once knew slips away from them.

So we could easily be forgiven for blocking out the possibility that it could happen to us.

This, however, is a decision that middle-aged people could find themselves taking.

Dementia in UK

  • One in three people aged over 65 will die with dementia
  • Some 750,000 people in the UK have a form of dementia, and more than half of them have Alzheimer's disease
  • By 2025 a million people are expected to be living with dementia, rising to 1.7 million by 2051

Source: Alzheimer's Society

Scientists at Brunel University have developed a test which they believe could eventually indicate whether people in their 40s have a higher chance of going on to develop the condition.

Although it does not offer a cast-iron prediction that the patient will develop or be free from dementia, it does allow those displaying indicators - tiny areas of damage in the brain - to receive early treatment and adapt their lifestyles as a preventative measure.

Alzheimer's disease is the most common form of dementia - or loss of cognitive ability - in the UK, affecting an estimated 465,000 people.

During the course of the disease the structure of the brain is altered, causing brain cells to die, and those with it tend to become confused and experience mood swings as their memory deteriorates.

There is, so far, no cure - although some drugs can lessen the symptoms and slow down the disease.

Doctors say early diagnosis can allow these treatments to have a greater impact.

Start Quote

Anglea Rippon

I can totally appreciate why some people would rather not know because I know how distressing it is to watch someone you love disappear from you”

End Quote Angela Rippon

In this respect, the Brunel team's test has the potential to improve the long-term condition of thousands of people.

But it raises an existential dilemma for otherwise healthy individuals: who would really want to live with the knowledge that they had a higher chance of developing such a devastating illness?

It is a conundrum researchers acknowledge can affect diagnosis rates. A 2004 survey (PDF) by a team of Israeli academics outlined the symptoms of Huntington's disease, a form of dementia, and asked respondents whether they would want to know if they or their partner would develop the condition. It concluded that "around half avoided finding out".

Little wonder, then, that according to the Alzheimer's Society, some two-thirds of people who die with dementia do so without a diagnosis.

One person who understands the dilemma is the former newsreader Angela Rippon, who watched her mother, Edna, succumb to dementia.

Ms Rippon acknowledges that witnessing the heart-breaking deterioration of Edna, once an independent-minded career woman, would be enough to put many people off confronting the possibility of the same thing happening to them.

"I can totally appreciate why some people would rather not know because I know how distressing it is to watch someone you love disappear from you," she says.

"But personally, I'd want to take the test. At least that way you can prepare. Otherwise, it's left to the families and loved ones to try and keep up with it."

According to Alzheimer's Society interim chief executive Ruth Sutherland, the low diagnosis rates for dementia can be attributed not just to patients not wishing to confront their condition, but also to lack of awareness and specialist training for GPs.

As such, she welcomes any test that, through increasing vigilance, might lead patients to seek diagnosis earlier - although she warns of the dangers of allowing such data to be misused by insurers and other organisations.

"What we know is that when people get a diagnosis, it's usually a relief to them," she says. "We also know what a big difference early diagnosis makes.

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"But we need to be very careful that these tests were not used to discriminate against people. What we would also want to see is the right level of support and counselling available."

Indeed, the manner in which patients receive such information is likely to have a major impact on whether they judge retrospectively that taking the test was the right decision.

Dr Daniel Sokol, a medical ethicist at Imperial College, London, says what is most important is that patients are given their results honestly and with compassion.

"Before taking the test, they should ask themselves why they would like to know and how a diagnosis of Alzheimer's would affect the way they go about their lives," he says.

"Ultimately, it is a personal choice. Some would like to know as soon as possible so they can modify their lives accordingly; others would rather not know. There is no single right answer that applies to all."

It is, after all, the loss of control that sufferers and their families find so painful. Offering the choice of whether or not to look into the future at least offers more of that precious autonomy.

Below is a selection of your comments.

From my own point of view I'd want to know and make what plans I can whilst I still have the mental faculties available to myself to do so. Ignoring a potential problem will not make it go away.

John, Cardiff

If you took the test, and it said you were likely to get dementia, then you took steps to make sure your dependents got your assets, if you eventually went in to care, could the council say you deliberately deprived yourself of assets so you wouldn't have to pay for care, even though you did it years before any symptoms appeared?

chookgate, Milton Keynes, England

After watching my mother slip away with dementia I can say, like all who've been through it, it is a debilitating illness for all concerned. I personally have absolutely no interest in knowing something so brutal and fearful is a possibility without much better levels of treatment. For me this is one case where knowledge is not power, much the reverse in fact.

Richard, Luton, Beds

I watched my father-in-law deteriorate slowly till his death earlier this year, knowing the lack of control he had in his life and the choices to make that he as unable to be part of, I would want to know - if I can change something to stop or slow it I would. I would if it came to pass have a plan of MY choices so decisions won't need to be made.

Juliette Pearson, Didcot,Oxfordshire

As both of my parents were diagnosed with Alzheimer's, I would definitely want to know. The family have had to jump through hoops to arrange care, get power of attorney and generally deal with their estate. I'm in my 50s now and would prefer to have that all sorted out so that my children don't have to go through the same difficulties we have had to deal with.

Anne, Cambs

If you took the test and it showed that you were more likely to get dementia in later years, would you not find yourself analysing yourself every time you walked into a room forgetting why you went in there (we all do it!) and if you couldn't remember someone's name?

Sarah, Okehampton

Those taking the test, may be forced to reveal the results to their employers or insurance companies in the future -therefore legislation needs to be on the public side ASAP. Otherwise, you can very well imagine the consequence: if you found yourself "positive"; for example, a company could argue that when you were hired, you lied on your health section on the application form, and the company insurance policy is not going to cover the cost and opt out from health payments.

Jason Goldsmith, London, UK

I watched my ex-husband deteriorate and then die of early-onset Alzheimers. His behaviour prior to our divorce put such a strain on our marriage (on top of other factors) that I couldn't live with him. We did not know then that he had this illness - he was too young for it even to be a consideration. Had I known, however difficult, I would have stayed with him to look after him. I've lived for years with a mixture of guilt and sadness.

Jackie, Gtr Manchester

As someone who has a grandmother in the advanced stages of Alzheimer's, I can honestly say I would never want to know - I would view it as a death sentence, in a sense. Seeing how the disease devastates families, in my family's case particularly my grandfather and my mother, I don't know how I would cope knowing what would potentially happen to me.

Ellie Jackson, Leeds, United Kingdom

Yes - the truth is difficult, but anything less is unacceptable.

Gordon Stewardson , via Facebook

I watched my late mother fearing Alzheimer's for years - as her best friend had it - and then succumbing to it in the last years of her life. Happilly she was not badly affected, and she was in a world of her own and therefore did not realise how her mind had gone. So I would not want to know if I was likely to develop Alzheimer's. I could be run over by a bus before reaching that stage, so why worry unnecessarilly about possibilities?

Veronica McMullin, Belfast

I come from a very small family, single and currently in my 40s I am almost 30 years younger than my nearest blood relative. If I were to get dementia, there isn't likely to a family member to either care for me or make decisions for me. I would like to know, and make a plan for if and when it should happen.

Tracey, Egham, Surrey

I am currently supporting my mother who at 93 has had Alzheimers for the last eight years. Early diagnosis and medication means she is still able to live at home, although with increasing dependency, loss of autonomy and sense of being a valid person. I don't expect to escape the same illness, and wouldn't have any test to confirm it. I am interested in a cure, not a diagnosis.

Chris, Nottinghamshire

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