Abu Dhabi, UAETuesday 17 September 2019

With a history of Alzheimer's in my family, I get sleepless nights from a predictive test for dementia

Would you want to know years in advance that you might be susceptible to contracting an incurable disease? I doubt it

Nick March's mother Joyce, pictured here in the 1990s
Nick March's mother Joyce, pictured here in the 1990s

There has been a rash of so-called “magic-wand” medical stories in the past month.

Last week The National reported that researchers had begun administering a trial injection to tackle obesity and diabetes. In limited tests, Imperial College London gave 15 patients a daily hormone jab for a month. On average, each patient lost 4.4kg over the course of the trial.

This month a fertility clinic in the UK has also claimed that it can delay menopause by up to 20 years via keyhole surgery.

And earlier in August, scientists in the US said that signs of Alzheimer’s, which is a progressive degenerative disease of the brain, can be detected as early as two decades before the syndrome takes effect and with a high-level of accuracy via a blood test.

There is a form of seduction in each of these stories, which is amplified by media organisations seeking to synthesise complex scientific advances into simple news stories.

All three stories should be handled with care, while recognising that these are groundbreaking medical advances and it is not the researchers who write the headlines.

In the case of the obesity jab, scientists point out that the injection is not suitable for all those with obesity. With the menopause-delay surgery, practitioners would have to work closely with those seeking the procedure to understand why they would want the treatment.

But it is the Alzheimer’s test that concerns me most, especially as there is no form of prevention save for some broad lifestyle guidelines to abide by. There is certainly no cure.

Perhaps it troubles me because I have skin in that game – there is a history of Alzheimer’s in my family.

For those who are diagnosed with dementia, it is a long, grinding conflict with no prospect of victory

As a white, middle-aged male whose BMI sits at the upper end of the normal range, it is easy for me to bat away talk of obesity jabs and menopause-delay procedures do not affect me. But a potentially predictive test for dementia strikes right at the issues that give me sleepless nights.

My mother, who died nearly three years ago, lived for nine years after clinical diagnosis, but there were signs of memory loss for some years before she was formally diagnosed. I use those words because the curse that falls upon all those close to people with dementia is to endlessly seek to carbon-date the moment when it first became noticeable.

But the carer’s curse is nothing compared to those who live with Alzheimer’s.

The Alzheimer's Cafe in Dubai offers support for those with the condition. Co-ordinator Birgit Ertl hands out purple Alzheimer's ribbons to participants. Antonie Robertson / The National
The Alzheimer's Cafe in Dubai offers support for those with the condition. Co-ordinator Birgit Ertl hands out purple Alzheimer's ribbons to participants. Antonie Robertson / The National

There are other conditions that we are told you can battle with, but for those who are diagnosed with dementia, it is a long, grinding conflict with no prospect of victory. It is a disease that slowly consumes you and the most unwanted visitor knocking persistently at your door.

The World Health Organisation estimates there are now 50 million people worldwide with dementia, with up to 10 million new cases diagnosed every year.

Neither my mother’s years with Alzheimer’s nor those growing statistics convince me that a predictive test for dementia is a good idea.

Would you really want to know? I doubt it. How much would a positive test result change the way a person lived their life or how colleagues, friends or even your employer viewed you? Greatly, I’d expect.

Any one of us is more likely to act irrationally if a health timebomb was placed at our feet. The likelihood of depression, reckless behaviour or worse would naturally increase as the years between diagnosis and likely onset of dementia recede.

So no test for me, thank you. I’ll attempt to live as responsibly as I can and hope that this provides sufficient defences against the relentless oncoming tide of ageing and its associated problems.

There is one other trench I will dig.

My father-in-law, Dr Chris Foote, has recently helped start a UK charity called Chiltern Compass. While its work is local, its example is potentially global. Its stated aim is to help in the provision of advice for end of life planning.

Dr Foote says that “having the conversation about dying does not bring death closer” and that studies have also shown that someone who plans for their own death helps those left behind to grieve and, of course, move their lives on.

It is better, in my view, to have that conversation than to take a predictive test for an incurable disease.

Nick March is an assistant editor-in-chief at The National

Updated: August 21, 2019 07:33 PM

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