Hello, Talking Point. My mum died with mixed dementia more than three years ago, and I haven't been here for a long time. However, something happened today which struck me as an indication that our fear of "inherited" dementia could be used to exploit us and I am wondering what other folk here think. Specifically, among all the unwanted stuff that pops up on my Facebook feed now that I'm past 70 (Funeral plans, residential care homes, ludicrous mutton-dressed-as-lamb clothing, etc etc etc) today for the first time I got an invitation to contact an organisation called Re:cognitionhealth.com to "take part in clinical research" and "help find a cure for Alzheimer's".
I've been taking part in a highly reputable university-based research program almost since mum died and like all of us, I'm very much inclined to assist with research in any way I can. But when I read through the detail of this invitation, it was clear that the first step would be a genetic assessment of the risk level of developing dementia, subject to which you'd be ask to trial some treatments. And this is a private organisation specialising in dementia treatments - a business which profits from offering hope to anxious or confused people. So it would be very much in their interest for them to tell anyone taking the test that they have an increased risk of developing dementia.
All of which means that I wonder how meaningful it would be to take part or accept their invitation to talk to one of their consultants. Of course, since mum died with the condition, I would very much like to know what my risk is, but I'm fairly sure that if I was determined to find out, I could do that through commercial DNA testing. On the other hand, if what these guys are doing is genuine research, I would like to be helpful. Does anyone here have any thoughts or advice or experience on this ?
I've been taking part in a highly reputable university-based research program almost since mum died and like all of us, I'm very much inclined to assist with research in any way I can. But when I read through the detail of this invitation, it was clear that the first step would be a genetic assessment of the risk level of developing dementia, subject to which you'd be ask to trial some treatments. And this is a private organisation specialising in dementia treatments - a business which profits from offering hope to anxious or confused people. So it would be very much in their interest for them to tell anyone taking the test that they have an increased risk of developing dementia.
All of which means that I wonder how meaningful it would be to take part or accept their invitation to talk to one of their consultants. Of course, since mum died with the condition, I would very much like to know what my risk is, but I'm fairly sure that if I was determined to find out, I could do that through commercial DNA testing. On the other hand, if what these guys are doing is genuine research, I would like to be helpful. Does anyone here have any thoughts or advice or experience on this ?