Carers of people with dementia
Genetic testing for dementia
Inherited factors alone only very rarely explain why some people develop dementia. When dementia starts before the age of 60 it may occasionally have a genetic cause which can be tested for. Some people with dementia, and their relatives, worry that dementia may run in their family and want to know more about genetic tests.
Some of the carers we interviewed were in favour of genetic testing for a subset of young onset Alzheimer's Disease. This was usually because they believed that by finding out before any symptoms appeared, it might be possible to prevent or slow the course of the disease. A man who had cared for his wife until her death had changed his mind and would now consider testing to gain peace of mind for his new partner and himself. Unlike most other parents we talked with, who thought that children should make their own decisions about testing, he said that if his children were small he would have them tested. In situations where genetic testing is offered, the family should be offered counselling by a specialist geneticist who can think through the pros and cons of testing with them.
Is in favour of testing if early detection might allow for treatment that could slow the course...
I think the research suggests that you know over the next twenty or thirty years we are, we are going to, we probably are going to come up with.
Something which will if not cure dementia at least will, can alleviate it dramatically. And therefore anything which can make the younger generation more alert to the possibilities of developing it and, and therefore can take any actions, which might alleviate the early stages seems to me a good thing. So on the whole I think I'm probably rather in favour of, genetic testing. Yes, I think on the whole I'm in favour of it and I think my daughter is also probably too.
Has changed his views about tests since looking after his wife. Is now planning a test for...
Would you want your children to be tested?
Are we talking about grandchildren or tiny children? Well even if I'd like my family tested, they're at an age where they make their own decisions but, usually you know they're, I would say 'Yes,' but then they would have to make their own decision. If it was a, a small child then I'd have it done, now. Because there's so many things that can be done in the early stages, so instead of you being seriously ill or dying you can be made better. So yeah I think it's a good idea now to have these different tests, and that's why I'm having the one as I've already said.
Others were less optimistic about prevention, or concerned about the effect of genetic testing on insurance premiums, but thought that adults might need to know when they were making decisions about whether to have children (pre-conception screening). A woman who said that she would not have wanted to know when younger and working, thought she might want to know now that she was planning her retirement. Another woman who had cared for her mother said she would want to know for herself so that she could make plans and spare her children what she had to go through with her mother, but would not encourage them to be tested.
Says she would not have wanted testing when younger but might be interested now she has retired.
If preventative treatment becomes available most people would favour testing. Several carers could not see the point of testing when it wasn't clear what could be done with the information. Some thought that knowing that one would develop Alzheimer's at some point in the future could be a Sword of Damocles, causing people to feel hopeless, although another woman pointed out that one could be knocked over by a car in middle age and never develop the predicted condition.
Cannot see the benefit of repeated testing if there is no preventative advice or treatment to...
Blue eyed, fair-haired white babies, yes I would have concerns about that. Or boys or girls, yes I would have concerns about that. But not, not otherwise I don't look on it as a Frankenstein thing, I look on it as progress. I mean we've progressed ever since man was created. This is just another way that we are able to progress. That's just, that's just my opinion anyway.
Well I think that's got to be a personal matter. I know that [my partner]'s daughter has said that her brother has said that even if there was genetic counselling he wouldn't go for it because unless, I think the good thing about genetic counselling is if you're aiming to have children and you want to know whether there's anything in your family that you're likely to pass on.
It can be valuable then. And then I think if you, if you are in danger of developing something in later life about which nothing can be done I really don't see the point, because all you've got is the Sword of Damocles hanging over your head. Knowing that further down the line, X number of years you're going to start developing, I mean lets just say dementia for one thing, or cancer or, I mean we're all going to die of something but do you want to know that thirty years on you're gonna develop dementia?
I don't want to know I, and if I went to see a geneticist and I had the tests and they said 'Oh yes you've got all the signs that you're going to develop dementia,' it would just, I might as well put a gun to my head and commit suicide now.
Because I think unless you know that something can be done about it, and we're not that far on enough yet to know that. There is nothing we can do to prevent dementia in spite of them saying 'use it or lose it' You know I have a living proof here of somebody doing a degree and then losing it straight away, so it doesn't protect you, it might help in some cases but nothing can protect you against the onset of it, as far as we know, unless it's caused by alcohol abuse or boxing or something like that and that's a physical cause.
So no I think the genetics, the fact that we can maybe identify the markers is dangerous if we can't give anybody any hope. So I think it's a very murky pool at the moment. I think when we're further down the line in a few years time and they've got maybe things they can do about it, yes, that would be good. But at the moment they can't for dementia, so what's the point!?
People sometimes have a strong sense that they are a likely 'candidate' for a disease, and that testing would just confirm what they suspect. One woman, who had cared for her mother, had a theory about personality type, which she believed made her particularly vulnerable.
Can see pros and cons to having a genetic test for dementia, just as she could for cancer
You mean to find out whether they're likely to get it? Well my immediate thought was good, that's great and then I think do I want to know. I mean I really would like to know, I mean I've always said if I've got cancer and it's terminal I would want to know. So in a way I would want to know, but on the other hand if I'm going to get it anyway is it going to make any difference?
I mean already I'm convinced I am going to get it, to be honest, and, not just because of my mother but because of, I don't know, I have theories of personality type and all sorts of things which may be completely unfounded but I'm sure I'm going to end up with it. So yeah I suppose it would be interesting to have it confirmed.
I once found a lump and I thought if I found a lump I would go to the doctor straight away but I didn't because for a little while I just pretended it wasn't there, and I went in and it was nothing and I haven't got it now. But, I think, I think it's a good thing, yes genetic testing I think it's nice to know you've got the choice perhaps psychologically, it would be nice to know that you have got the choice of finding out if you want to.
Like a lot of things, you know if you're on a diet and you know you can't eat chocolate you immediately want it don't you. But if you're on a diet and you can eat as much chocolate as you like then you've got the choice, it would be nice to know the choice was yours to find out if you wanted to. But whether I would actually find out.
I probably would actually, I probably would want to find out. But whether I'm going to get it or not going to get it I still have a vested interest in finding out what research is going on and what things ...
Simply knowing that a test is available can cause a dilemma. Some carers were uncertain whether to tell adult children that it might be possible, since they might prefer not to have known. In some cases it would not be known if the disease was a inherited type unless a post mortem examination was performed. A woman caring for her second husband was uncertain how to deal with this information with her step children, and wished she knew where to turn for advice.
A post-mortem may reveal fronto temporal dementia, with implications for her husband's children....
But, there is a vague possibility still that there could be something genetic in it. And the only way to be sure is with a post mortem but because this area does not have a teaching hospital or a specialised interest in dementia they wouldn't normally request to do a PM. And if we wanted it done we need to set it up obviously before he dies.
But that's something, which for myself I mean is, the dementia has hit him and the cause isn't terribly relevant but the implications for his family are still there. And how I'm going to broach that with them is, is a biggy. I don't know how you know 'Do you want your dad to have a post mortem so you'll know if you're going to get this disease? ' Put at its bleakest. So that, is something I'm working on at the moment. About as ethical as it comes I guess.
I feel if any of them want it then yes I think, I think it has to be for them to decide. I mean I, I don't mind, I don't have any real worries about it. So it is really I think for them, for them to decide, if I decide to give them the option. Perhaps I need to talk about it more. I don't know who with really.
My, my kids are brilliant, they're very supportive but I think they would have to say 'Well it's, it's for his children to decide.' Because I mean they just see as , the cause of this horrible thing is not really relevant, we just deal with what we've got.
The local consultant, he was very, very up front about you know what it entails and whether they would want to know and you know whether testing, I suppose if I gave them the option, maybe if we had the post mortem then they would have to look at the option of taking it further for themselves as individuals.
But I suppose once you're faced with that sort of option it does put a lot of stress on you, doesn't it? And then on the other hand if anything developed later, two of his children I know are still considering extending their families, maybe they need to know before that, before that happens. Maybe if they've got that knowledge then they will make different decisions, I don't know! There's one couple, I mean they're both in their 40s and they only have one child. I think we've more or less been reassured on this point last, last autumn.
Because my younger stepdaughter had read something about frontal lobe dementia and it being like a 50% chance of this particular gene being passed on and she asked me to find out more about it. Which I did and we got another assessment of from the doctor who is based in north. And he came back again with the vascular dementia probably caused through smoking, he hasn't smoked for thirty or thirty-five years but he said that doesn't matter it was still an option. But he felt that the likelihood of it being one of the other frontal lobe ones was minimal.
Last reviewed February 2020.
Last updated March 2015.