Genetic testing

[canary]

OH and I went to see the neurologist yesterday about his FTD. The neurologist wants to do genetic tests and asked us to think about it. OH is no longer able to consider the implications and is happy to just go for it, but Im full of indecision.

The main concern is that we have children and a grandchild. If it is indeed genetic then it will affect them. Also, my daughter is emotionally fragile and I think it would affect her quite badly. The consultant has said that we dont need to tell them if we dont want to, but Im not sure that I am comfortable with that. There is no-one else in the family with these symptoms (as far as Im aware) and OHs parents were not related, so the likelihood of this being genetic is quite low - although it could easily be a new mutation.

I dont know what to think and its thrown me into a spin. All advice welcomed.

 

[marionq]

OH and I went to see the neurologist yesterday about his FTD. The neurologist wants to do genetic tests and asked us to think about it. OH is no longer able to consider the implications and is happy to just go for it, but Im full of indecision.

The main concern is that we have children and a grandchild. If it is indeed genetic then it will affect them. Also, my daughter is emotionally fragile and I think it would affect her quite badly. The consultant has said that we dont need to tell them if we dont want to, but Im not sure that I am comfortable with that. There is no-one else in the family with these symptoms (as far as Im aware) and OHs parents were not related, so the likelihood of this being genetic is quite low - although it could easily be a new mutation.

I dont know what to think and its thrown me into a spin. All advice welcomed.

I am quite certain my husband's Alzheimers is genetic. Father, grandfather and those brothers who survived other illnesses to late seventies also affected.

I have no sons and am pinning my hopes that it is on the male side as his sister does not have dementia and is 82. My three daughters may well inherit from my family where there is no dementia.

On the other hand I come across many who have no pattern of dementia and still get it because as we know there are so many different types and causes.

My grandson asked me a few years ago if he would be affected and I said unequivocally no even though in truth I don't know. I reminded him he comes from the female side through his mother. I dont want him to worry. If he ever becomes a geneticist he can figure it out for himself. Not easy.

 

[Primrose19]

You can ask for a referral to a genetics clinic who have specially trained counsellors. They will help you consider all the pros and cons before going ahead with the test. Your neurology clinic may have links as testing for Huntington disease used to have lots of counselling done first but now for other diseases, they tend to jump in straight away.

 

[mab]

Same thoughts here.
OH has FTD as does his sister. At least 2 other siblings had dementia (foreign country.. no definite type) Of our 2 children it was our daughter who was especially worried, but the Consultant was less so because the onset had been later in life rather than early.
Having said that, she did go on to consult with a geneticist, who has left the options open for us.
It's a very difficult decision, isn't it? I know my daughter will fret with no result, yet will fret much more with a positive one.
Same Consultant has written that she does not feel OH has capacity to make a decision on this, so it's left to me. Pandora's Box???

 

[canary]

Yes, the neuro mentioned genetic councelling. Im not sure how to access this, but I expect that he will know.
Have you been offered genetic testing @marionq ?

Pandora's Box???

Exactly.

 

[marionq]

Yes, the neuro mentioned genetic councelling. Im not sure how to access this, but I expect that he will know.
Have you been offered genetic testing @marionq ?

Exactly.

It is so obvious Canary that I don't want to spook the family any further. Because my family are free of it thus far my daughters are taking the positive view that they have inherited their slim bodies and legs from their Dad and everything else from me. Lol

My niece whose father came from a family riddled by strokes and vascular dementia has considered testing but she too is hoping that as my sister has dementia free genes (?) she will take after her mother.

Of course a cure may be found for some of these dementias within the next couple of generations.

 

[SnowWhite]

I wouldn't want genetic testing for Alzheimer's. I've had genetic testing for bowel cancer as it's very prevalent on my Mums side of the family. It revealed that I'm medium to high risk of developing bowel cancer. However, BC is one of the most treatable cancers if caught early so I'm not bothered as I am tested regularly.

Different with Alzheimer's and I don't want to know.

 

[Fullticket]

I've thought long and hard about this as mum's type of dementia was suffered by her brother and her sister (unfortunately her own mum died when mum was five and there is not much knowledge on that side). On the plus side I am a different blood group and my dad and his mum were sharp as pins to the day they died (but had bowel cancer). I have also considered whether mum's family dementia was caused by having an electricity pylon in their back garden when they were children. Unsurprisingly no-one has come back to me regarding that enquiry!
I have no children of my own and, on balance and being a bit of a scientific mind, I think I would want to know so I could put things in place in good time to ensure I am not a burden to my OH.

 

[cobden28]

Shortly after my stroke in 2006 I started to suffer a lot of episodes of left-sided weakness which at the time I was told were TIA's; there is to my knowledge no history of early onset dementia on either side of my family but the hospital and my GP were concerned that these repeated TIA's might be s sign that I could be carrying the gene for early onset dementia. I was 51 when I had my stroke, I'm 62 now.

I had my medical re cords checked thoroughly by hospital neurologists and was fully prepared to go to the one hospital in the country (I think it was St George's, up in London if I recall correctly) that can do the full genetic tests for this, but fortunately I wasn't required to go this far because it was felt I'm not at risk.

I discussed the situation fully with my husband at the time, and we both agreed that I would definitely want to be tested for the gene and to know if I had it, simply in order that I could prepare myself fully for what would lie ahead. Even if I were to be tested and I did carry the gene for early onset dementia, I've always firmly believed it's a good idea to find out as soon as possible so that I could prepare myself and my family for what would lie ahead.

Thankfully I'm OK, and it looks like I'm going to live until well into my late 80's if my parents are anything to go by .

 

[father ted]

Personally, I would not have it done. If it proves there is a genetic element it will have implications for your children and grandchildren and that is a lot to carry. Even though the Dr said you don't have to tell them the result would you be happy to carry this information and not tell them?
I personally feel it would be different say if it were a breast cancer gene say, at least there would be the opportunity to take evasive action and have regular screenings. In your situation there is no cure currently so what would be the point in knowing.

The vast majority of people that use this site would not have had advance information. None of us know what the future holds and some of us may be unlucky enough to carry all sorts of defective genes but either the disease is not activated because we are fortunate that our choice of partner does not carry the same gene or an out of control bus/ severe stroke/ fatal accident etc etc takes us out of life's equation before we fall foul of our own body chemistry.

 

[LizK]

Our son had the test and he carries the Alzheimer gene for late onset . It has affected him and his family greatly and I really wish he hadn't had it. The genie's out of the bottle now and we can't put it back.

Liz

 

[Grannie G]

I would only consider genetic testing if there was a sure method of prevention , a cure, or before starting a family. I would not be able to live my life to the full if I had the probability of dementia hanging over my head.

I'm currently being tested annually as someone who has donated their brain for research and I think I`d manage it if I started to have more than expected ageing problems but genetic testing is a no for me.

 

[arielsmelody]

Why does the neurologist want to do genetic tests? I don't suppose it will affect your OH's treatment at this point? Is it just for medical research purposes?

The only reason I could see for having the test is in case knowledge of medical treatment or prevention advanced in the future, and that information would be useful for your children/grandchildren at that time. I wonder if it would be possible to give permission for the tests to be done, but ask that the information be kept confidential on your OH's medical files for now.

 

[Primrose19]

Adult-onset diseases like cancer and dementia are caused by effects from multiple genes, environmental factors, lifestyle etc. A few genes are known to cause early onset and these can be tested for if the person has developed the disease at a younger age. Even so, it just increases the risk for other family members if they inherit the mutation but allows for future planning. There is a good page on this website:
https://www.alzheimers.org.uk/info/20010/risk_factors_and_prevention/117/genetics_of_dementia/7

 

[Spamar]

One of the best bits of advice I have ever had is do not have any test unless you can deal with any result. So you need to think how you would react to a positive result.

My fil, my sis in law and my OH all had Alzheimer’s, OH wanted testing early on so he could tell his daughter, but I persuaded him that she had enough to cope with at that time.

 

[Risa]

I personally wouldn't have one as I think genetic testing for AZ is still in it's infancy and there is a long way to go before a test would be able to categorically state to a high level of accuracy whether you would get the disease or not. I would want at least 90-95% accuracy so I could make decisions based on the results.

 

[Louhelp1234]

I'm no expert whatsoever still learning my way through this so my response won't really be worth much help Canary but you are always so helpful when've you reply to me and my posts I couldn't ignore your post without commenting.
It's a really tough call personally I wouldn't want my mum to be genetically tested and I pray I'm not forced or bullied into it.
I wouldn't be able to live with the results if it was positive not only for myself who no doubt it would push me totally over the edge I struggle with the whole situation already but more importantly I couldn't deal with the fact of knowing my kids were at risk.
There's no way I would be able to know and not tell them but wouldn't want to burden them with it. We are so close that I'm sure if I knew they would be able to tell no matter how much of a front I put on.
I also know they like me wouldn't want to know as we discussed it before.
If there was a cure or something could be done to prolong the illness starting then maybe but as it stands I'd rather be in denial.
It's bad enough having the nagging doubt without conclusive evidence. I wouldn't be able to cope.
Have you spoke to your kids previously about it maybe that would give you indication.
Big hugs and good luck with making the very hard decision xxz

 

[northumbrian_k]

For how many years would younger generations have to carry the knowledge that - based on relatively underdeveloped science - they might perhaps one day fall victim to a particular disease? Or there again perhaps not. It seems that this may be being suggested for reasons not related to the wellbeing of your other half, yourself or the family. I wouldn't in your position @canary.

 

[Lawson58]

For how many years would younger generations have to carry the knowledge that - based on relatively underdeveloped science - they might perhaps one day fall victim to a particular disease? Or there again perhaps not. It seems that this may be being suggested for reasons not related to the wellbeing of your other half, yourself or the family. I wouldn't in your position @canary.

I had the same thought that the intent of the testing was for further research that one day might eventually provide better treatment for those who come after us.

So if Canary's husband had the tests, would it be necessary for her or her family to be informed of the results?
Wouldn't it be possible for the results to remain confidential unless requested otherwise by Canary?

I just have the feeling that if there's one tiny thing we can do that would help others, not just for dementia, then I would go ahead and do it. My daughter has a fairly rare blood group and is currently undergoing bone marrow testing to be a donor, knowing that she will never know the recipient. My son has just given his 100th blood donation. We just do what we can.

But I realise that this testing might be confronting and at the end of the day, Canary needs to go with her instincts and do what she feels she is comfortable with. If I were in her shoes I might just feel the same way.