At our last appointment with the consultant My Loved One and I agreed, in principle, that we would – if asked – be willing to take part in Alzheimer’s research.
A few months later brought a phone call telling us about a Cardiff University project called Alzheimer’s Disease Genetics. It was all painstakingly (laboriously) explained to us verbally and sent to us in writing. The eventual upshot was the arrival last week of, let’s call them Leila and Naomi, who work at Kings College, for a long information gathering/sharing session. It took most of a morning with the two of us working with the two of them in different rooms at our home.
I answered dozens and dozens of questions about his family and changes I’ve noticed in his behaviour, attitude, mood, comprehension etc (it might have been quicker to direct Leila and Naomi to these blogs!). MLO was, meanwhile, doing cognitive and other assessments in the dining room. Predictably, he couldn’t remember much to tell me about it afterwards except to say fairly cheerfully “I had to do that copying thing with the squiggles again. And of course I messed it up as usual.”
The first thing which really interests me about this work is that the aim of project is to indentify environmental, biological and genetic factors which influence the progression of Alzheimer’s disease and other neurodegenerative disorders. Yes – genetic. I did a double take too. For a very long time medics have been telling the public that late (that means at age 65+) onset Alzheimer’s is not hereditary, although early onset forms of the disease are. We’ve been personally assured of this several times by our consultant and others in the last few months too – and that’s information I’ve been relieved to pass on to our sons.
Now, I gather, this project in Cardiff has found 20 genes which are related to Alzheimer’s and, by implication, staff there are beavering away in search of more. So much for a disease which is not inherited then?
Leila and Naomi, who went off with blood and DNA samples (his, not mine) as well as huge sheafs of info, have ten sets of research interviews to do. We were their fifth. Others like them are doing similar ground work all over the country and then it all goes to Cardiff for analysis We’ve been promised newsletters and so forth to keep us up to date with activities and findings.
If it is eventually established that genes are partly or wholly responsible for allowing Ms Alzheimer’s to devastate people’s lives then surely – in time – there is hope that ways will be found of blocking whatever triggers this horrible illness? Gene therapy and all that. It isn’t, at this stage, going to be any help to us of course but it comforts me a little when I think what the future might hold for our sons and grandchildren.
PS. Even Ms A sometimes has a sense of humour. “While you’re out could you go into one of the ethnic shops and get a bag of cinnamon?” I said when MLO was off for a stroll. “The supermarket stuff is stale and useless”. An hour later he came back proudly bearing a packet of cumin. Well I suppose it’s brown powder but it won’t taste good on my porridge …