Carers of people with dementia

Genetic testing

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, 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. 

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.

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.

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.

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.

Last reviewed March 2015.

Last updated March 2015.

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