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9th December 2014

Alzheimer’s – do you wanna know?

They call it the long goodbye. People with Alzheimer’s disease slowly but surely slip away, losing their memory and, often, their personality.

They forget their families, and their loved ones barely recognise the person they once knew.

It begins with simple things: losing keys, forgetting names, struggling to focus on daily tasks.

At first it can be explained by being busy or stressed but, over time, it gets worse until absent-mindedness gives way to total absence. It can be a long, cruel downward slide.

We often think of Alzheimer’s as a disease of old age, not least because diagnosis usually comes late in life. But early-onset Alzheimer’s disease affects millions of people around the world.

Chris was diagnosed at the age of 43. Her mother and sister both developed Alzheimer’s at an early age.

This video was put together by her husband to record their relationship but it also documents her decline. Watch it.


Once a successful businessperson, Chris now lives in a care home and has difficulty recognising her husband – even though her affection for him is clear. Eventually that too may fade.

Sadly, while Chris’s story is relatively rare, is it not unique. Take Rebecca who received two momentous pieces of news from her doctors in quick succession: she is pregnant and has early symptoms of Alzheimer’s.


Diagnosing Alzheimer’s based on symptoms is not always easy. At first, doctors thought Rebecca had depression because she lost her appetite for life. But it soon became plain that she had dementia and was deteriorating quickly.

A young woman in her 30s, Rebecca has now moved back with her parents who are caring for her and will help with the baby when it arrives.

They are stimulating their daughter’s mind through mental exercises like word search puzzles – perhaps repeating the kind of exciting child development tasks they did together when Rebecca was a child. But this time, their daughter’s mental ability is going backwards.

Rebecca and her husband know that at some point after their baby is born, Rebecca will forget its name and will find it impossible to manage the many tasks new parents perform.

Diagnosis

At present, Alzheimer’s is usually diagnosed based on symptoms meaning that by the time a doctor breaks the news, the disease has already begun to take hold. There is no cure.

But what if you could find out much, much earlier – before the first signs were noticeable? Would you want to know?

Researchers are working to identify new biomarkers which would serve as an early warning sign for Alzheimer’s. Sophisticated brain scans that use MRI or CT can detect changes in certain parts of the brain associated with dementia.

Newer technology allows doctors to use ‘radiotracers’ which attach to the proteins associated with Alzheimer’s. They can then use MRI or CT scans to detect levels of this Alzheimer protein.

Other research is focusing on genetic testing – which would require a simple blood test – to estimate the risk of developing dementia.

There are even some tests in development which could use eye and smell tests to detect Alzheimer’s.

Dementia dilemma

The question is: do you want to know?

It’s a dilemma raising all kinds of practical and ethical issues.

If you had an early diagnosis but no symptoms, are you obliged to share this with prospective partners? Would couples stay together if one of them failed the test?

As agonising as it would have been for Rebecca and her husband to know there was a strong chance of her developing Alzheimer’s in her 30s, might it has influenced their plan to start a family?

A survey conducted earlier this year shows that 74% of people would want to know if they had a neurological disease – even if there was no cure.

Strikingly, 81% of respondents said they would want to know if someone close to them had an incurable neurological disease.

The most common reasons for finding out were based on the prospect of starting treatment or making lifestyle changes but, despite a great detail of ongoing research, the prospects for halting the progression of Alzheimer’s are currently poor.

Other reasons to find out which were cited by people who were surveyed were: to have your financial affairs in order, to spend time with family, and to fulfil lifetime ambitious.

So. Would you wanna know?

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