Genetic testing pros and cons

[summerlovingvibes]

My MIL has early onset dementia and Alzheimer's. Diagnosed around age 55 but probably had it for a while longer - we noticed symptoms around 52/53. Medically retired from work & is now starting to decline a fair bit.

Tonight my DH told me he thinks he might get genetic testing. I'm going to try and write a pros and cons list with him. Help!

I don't even know if I would want to know. On a very very selfish note, I don't know if it would change our relationship if we knew. We have 2 very young children (baby and toddler) and I just don't know how I feel.

Help me do a pros and cons for him and for me? He also has a brother. I don't know if his brother would want to know or not.

I’d advise getting genetic counselling first. My dad has a rare genetic form of dementia and my immediate reaction was to consider getting tested. Then I changed my mind to never ever getting tested. I less referred on the NHS for genetic counselling and it has turned me from a terrified wreck to a functioning human again, I am not getting tested anytime soon, I think I personally live better not knowing for an indefinite amount of time rather than taking the gamble of testing and living the rest of your life knowing what will or won’t happen. But it is not the same for everyone. It’s taken 12 years to get to where I am right now. It’s worth remembering, for my dad’s dementia, only 10% of people actually do genetic testing. Wishing you all the best 💐

is the early dementia linked to another event or illness? stroke and people who suffered brain injury (including surgery) are at higher risk of developing dementia. in which case the genetic testing might not provide much insight into the future likelihood.
regardless of your age; discussing poa, wills and being aware of long term care options is helpful for everyone. even a quick discussion on cremation vs burial and big service vs private.

Thanks both for your replies.

@SinisterBumFacedCat I immediately said about counselling to which he was very much "no need / what will be will be and therefore if he is more likely to get it then he can't change the results". I feel like he's not really taking it seriously.

From a personal point of view, I've seen my aunt become a carer for my uncle at the age of 50 when he was diagnosed at 55, a few months after he took early retirement to enjoy their life together. So I've seen first hand how it impacted on her, and it's awful. So from a very selfish point of view, if we knew he was more likely to get it then do I want to know I'm going to have to become a carer as soon as our children are grown up? I'm not sure. Would he retire early and we spend all our money enjoying life? Unlikely - incase he didn't get it and then we were broke!

Obviously if he tests and isn't more likely to get it then it doesn't mean he won't anyway - we know that.

So I'm not really sure testing would help. But he seems to want to. He said he wouldn't necessarily tell me but I don't feel like that's something I wouldn't be able to know as his wife? I think he's thinking more along the lines of "I'm not going to go through what mum is going through (she's really bad at the moment which we are trying to get help with), and he'd go off to dignitas or something (although I don't think that is even possible).

My head is just scrambled!

@greenspaces4peace no other life event at all , no. Fit and well all her life until now. Her dad also had it from an early age.