When My Loved One was first diagnosed with Alzheimer’s one of my first questions to the consultant was “Is it hereditary?”
She assured me very firmly that it isn’t. Later on that nightmarish day it was a priority to pass that fragment of good news on to both our sons because I knew that it had been worrying them.
The consultant then went on to tell me that her youngest patient is 37 with a young family – which promptly put our problems into some sort of perspective. “Early onset Alzheimer’s like that does tend to run in families but age-related Alzheimer’s, such as your husband has, does not,” she said.
I have read this in other reputable places too. Received, informed wisdom seemed to concur. It isn’t genetic – although no one knows what the cause is, of course, which is why there’s so much groping about for a way forward.
Then an odd thing happened. At the end of last year, we were asked to take part in some research being conducted by Cardiff University. Two researchers came to our home and interviewed us at length, and in detail, in separate rooms.
When the pleasant young woman who wanted to come phoned me to make an appointment she told me that 29 genes associated with Alzheimer’s had been identified. What? Did I hear that right? Bit of a volte-face surely?
Before they came I did a bit of family research in anticipation of some of the questions I thought (rightly) we’d be asked.
Neither of MLO’s parents, who died of physical illnesses at age 82 and 89, showed any sign of dementia. His paternal grandmother, however, died in a nursing home in her early seventies having completely “lost it”. I checked the death certificate. Putting two and two together from the vague terminology often used back in 1970 – I’ve concluded that hers was almost certainly vascular dementia which is a different illness. And none of MLO’s cousins, all around the same age as him, have Alzheimer’s.
Then there was MLO’s mother’s younger brother who died in 2010. In that case we know it was definitely vascular dementia following strokes and other incidents.
In short I found no familial links whatever with “ordinary” Alzheimer’s although it’s hard to research back far because a) people died younger b) death certificates were a lot less reliable by modern standards and c) family folklore often gets it wrong.
So I decided to stop worrying about genetic links. After all, even if they exist I can’t do anything about it. And I’m not convinced they’re there anyway in MLO’s case. I don’t understand the science of genetics other than at the most basic level but I imagine 29 genes is probably a miniscule part of the human genome.
But this month I’ve had cause to think again. The Alzheimer’s Disease Sequencing Project (ADSP) at Boston University School of Medicine has just announced the results of an investigation which worked with 6000 Alzheimer’s patients and 5000 “cognitively healthy” (nice turn of phrase) people and found various genetic risk factors which predispose people to Alzheimer’s.
Cue for a lot of muted excitement from all sorts of people and organisations about the possibility of some form of therapy linked to this which could eventually make a difference. The word “breakthrough” was cautiously bandied about.
What we need – and need pretty desperately given the ageing population – is something which will work on the root cause or prevent the disease altogether. At present we only have medication which might (and often it doesn’t) alleviate symptoms in the very short term. And those drugs have been around for quite a while. No real progress has been made for a long time.
None of it will help us personally. We just have to keep buggering on as Churchill advised, taking each day as it comes with MLO able to do ever fewer things competently and my getting ever more frustrated.
Irrationally, it’s the trivia which get me crossest. I sent him to the pharmacy to collect his medication this week. They wouldn’t give it to him, presumably, because he told them some garbled rubbish. So I shall have to go myself. He keeps getting out his holiday wash bag, putting additional items in it and then telling me he’s run out of deodorant or aftershave and – having used table cloths all my life – I think I’m going to have to give them up because they now cause so much aggravation. And so it goes on. And on. Polish up your sense of humour, Susan, smile and keep telling the boys that It Is Definitely Not Hereditary.