If you could take a test which foretold your death in 20-plus years from a disease with no cure, would you? That is a question I have been pondering for the better part of three months.
Earlier this year, researchers announced the development of a test, which only took 15 minutes of your time and could be completed online too, that could predict the likelihood of developing dementia – a disease that is 100 per cent fatal and slowly began to steal our mother away in her early 60s.
The online quiz – created by research scientists of quite some standing – tests language, ability, reasoning, problem-solving skills and of course memory. Your results will help identify the symptoms of cognitive problems such as dementia. The last quiz I took online was which family in Games Of Thrones I would belong too. It was the Targaryens. I don’t know what that says about me.
More recently, it has been announced that three more early predictor-tests are being developed, which involve studying your blood, brains and spinal fluid that also might disclose your likeliness of death by dementia. The problem is that with very few treatments currently available for dementia and Alzheimer’s patients, the researchers themselves even say that most potential patients will be less than willing to have their future foretold in such a fatalistic, less-than-uplifting way.
And that is the existential quandary. Earlier testing of people who may, or may not, develop dementia – and the likelihood is higher for someone like me with a close relative who is dying from the disease – has the potential to help millions of sufferers through the development of new treatments. But the cost of such knowledge is also great.
Researchers now believe that dementia sufferers show symptoms decades before the disease finally becomes impossible to ignore. I presume those symptoms include memory loss, and perhaps the forgetting of the occasional word here and there. Little do they understand that the family of dementia patients – especially those of us heartbroken by the early onset of it – are well aware of these lapses in memory every single day of our fractured lives.
For about a year after mum’s diagnosis, every time I searched my brain for a word that was annoying just on the tip of my tongue, the D-word was never far from my addled thoughts. Every time I called someone by someone else’s name, again it hung there like an unspoken threat of what eventually lay in store for me, somewhere soon down the line. And the more I worried about forgetting a word, or mixing up my metaphors, the worse my language became. My tongue was tied in knots and my brain was frozen by fear.
It never crossed my mind that it was probably quite normal to be absent-minded sometimes, especially if you’re in your 40s and lived in London during the rave scene, have a stressful job, and have always been much more eloquent on the page than in person.
And then one day I was asked to deliver a 40-minute presentation to about 50 people with just 10 minutes’ notice. And I did it with no problems whatsoever. The words that spilled beautifully from my mouth, without stumbling or faltering, were like literate angels from sanity heaven and from that moment on I realised there was nothing wrong with my brain – for the time being.
I still have moments when it feels like cotton-wool is in my mouth and the words don’t make any sense at all. But usually this is because my speech hasn’t caught up with my brain just yet or I am trying to be nonchalant and alluring whilst talking to a hot man who has temporarily (and probably mistakenly) sauntered into my orbit. These things are normal, right?
So as I watch the remnants of what made our mum “mum” disappear day-by-day, my willingness to learn whether I will suffer the same fate does not become more pronounced. Rather the inevitable outcome of dementia just reinforces to me that life is precious and should be celebrated no matter how tedious your day may at first seem. I know it could well be your last. I don’t need a test to understand that.