My husband was diagnosed with Early Onset Alzheimer's last year, aged 53. His decline has been much faster than anyone imagined. Our children, now 15 and 17, have had difficulty coping and accepting, our son in particular. However, he has done some research and believes he has a 50% chance of developing the disease and wants a DNA test to confirm it (or not). But I think he is still too young (15) and not yet emotionally equipped to deal with such news, should it be the worst news. I have spoken to the Adult Mental Health Services team, who look after us and have been so wonderful, and they will talk to our son but say he has the right to know, despite my opposition and even though he is a minor. I told him just to live his life to the full and for now not to dwell on what might be in the future. Has anyone else had this issue and how did it resolve?
Right to know?
- Thread starter Langleys10
- Start date
My husband was diagnosed at the age of 50. His neurologist doesn't think it's the hereditary kind, he said then a lot of his relatives would have had early onset AD too. Our children are 16 and 18 now and when they asked, I told them what the neurologist said and that's all the information they wanted. My husband is in a medical trial and there they had to test the EPOE4 gene because of medication compatibility, we said we didn't want to know the result. The doctor told us by accident and fortunately it's negative. There are other genes to test , but for now it's enough testing for us. I'm actually glad my children don't want to know more, I think it would be a much to early age to live with the knowledge that they will develop AD.
Nowadays I think anyone must know their genes before deciding to have babies. Although I wouldn't chose a job based on my genetics. I could plan my life ahead (i.e. When use DNR) while I have full capacity
I wished my mum had an early diagnosis, so she could've done POA and end of life wishes.
Sent from my iPhone using Talking Point
I wished my mum had an early diagnosis, so she could've done POA and end of life wishes.
Sent from my iPhone using Talking Point
At 15 they think they know everything, but also are trying to make plans, A levels degrees jobs. They need to have an idea what they want to do to choose A levels, so I think they think ahead.
My daughter has just turned 16 and I am certain she would want to know. I agree entirely that at that age they aren't equipped to deal with it. (it is my 87 year old mother with dementia so no direct issue for us)
Have you considered some sort of counselling for him, with or without you. Have you got family friends who could help with these conversations.
He is at an age where life is difficult and he needs lots of support without dementia popping its head in as well (I am going through teenage hell at the moment - and get little sympathy from my older friends, they just nod sagely)
Ultimately my decision would be based on harming my relationship with my child. If he really wants to know after counselling, I would go with it, better to be with him than against him, as creating a rift would do more lasting damage than any result.
My daughter has just turned 16 and I am certain she would want to know. I agree entirely that at that age they aren't equipped to deal with it. (it is my 87 year old mother with dementia so no direct issue for us)
Have you considered some sort of counselling for him, with or without you. Have you got family friends who could help with these conversations.
He is at an age where life is difficult and he needs lots of support without dementia popping its head in as well (I am going through teenage hell at the moment - and get little sympathy from my older friends, they just nod sagely)
Ultimately my decision would be based on harming my relationship with my child. If he really wants to know after counselling, I would go with it, better to be with him than against him, as creating a rift would do more lasting damage than any result.
I wouldn't want my children to change their goals in life because of a gene test. In ten years time Alzheimer's might be treatable, then they'd spend the next 10 years regretting the choices they made in life due to those results. But it is a very personal topic and everyone has their own opinion.
I think I would be very concerned as to how your son would react if the test came back as being positive. I have no idea if a teenager at that age could really comprehend all the implications, what it means for his future, research developments etc.
Teenage years are difficult at best, with all the hormonal changes going on and trying to grow up before they are ready. You would know his emotional state better than anybody but teenagers can be quite uncommunicative and we can only guess at what is bubbling below the surface.
I think if it were me, I would try and get him to agree to waiting until he was 18 years old, promising him that if he still wants to have the test then that it will be done for him.
Teenage years are difficult at best, with all the hormonal changes going on and trying to grow up before they are ready. You would know his emotional state better than anybody but teenagers can be quite uncommunicative and we can only guess at what is bubbling below the surface.
I think if it were me, I would try and get him to agree to waiting until he was 18 years old, promising him that if he still wants to have the test then that it will be done for him.
There is far more entailed in dementia than genetics.
Even if it is the hereditary sort and even if he has got the faulty gene (two big "ifs"), that doesnt actually mean that he will develop dementia - not everyone with the faulty gene does. So you have to be very careful about interpreting genetics.
Even if it is the hereditary sort and even if he has got the faulty gene (two big "ifs"), that doesnt actually mean that he will develop dementia - not everyone with the faulty gene does. So you have to be very careful about interpreting genetics.
Thank you everyone. Useful comments from you all, as usual. Thank goodness for TP. Our SW and clinical psychiatrist have agree to talk to our son. They know my opposition, so maybe they can persuade him to put off testing for now. He told me that he's getting a tattoo on his 18th birthday, because I can't stop him then, so maybe he will have the same view about this test!
