Not sure what to do?!

[amyjane1]

Bear with me as this is my first time posting a thread on this forum......

And this is my story.....

My name is Amy, I am 25 years old, and have been related to Alzheimer's since I was 10 years old. My Maternal Great-Grandmother was diagnosed in 1995, and sadly passed away with late stage Alzheimer's in 2004 . My Grandmother (Her daughter) was diagnosed with probable early onset Alzheimer's in 2005 and is now at the late stages and is in a Care home who specialise in Dementia and Alzheimer's. The Doctors believe she was only around 60 when the symptoms started although she was diagnosed much later, she is now just 70 years old.

This is the reason for me posting this thread..... My mum is my Grandmother's daughter (as mentioned above), she is only 50 years old and it appears to both myself and my dad that she is starting to develop classic signs of early onset Alheimer's, however neither of us are able to approach this subject with her as she is close to her mum and finds it very difficult to talk about it as she can see first hand the degeneration and how hard it is watching her mum, and having watched her Nanna go through it. She will not go to the doctors to have any tests or to discuss the possibilities. I know people say that Alzheimer's isn't hereditary but I think this is a situation which could dispel those myths.

After long discussions with my dad, I have decided to contact my GP myself to see whether or not I would be eligible for genetic testing and counselling. If it was found that I carried the common genes related to Alzheimer's then maybe it may encourage her to face her demons. What do you guys think?

Any comments would be greatly appreciated xxxxx

 

[Sandy]

Hi amyjane1,

Welcome to Talking Point (TP).

I'm really sorry to hear how your family has had to deal with the burden of dementia over several generations.

The Alzheimer's Society has a factsheet on Genetics and Dementia:

http://www.alzheimers.org.uk/factsheet/405

I would say that if you want to investigate genetic counselling, that you should do it only from the point of view of what it will or won't tell you as a person. I think it would be a mistake to do it with an eye to influencing your mother.

Take care,

 

[terry999]

amyjane1

There is no right and wrong on this. I can only say what I would do. I would have the test.

If the test proved a link then some people would take it so badly that it will affect them so much that effectively ruining their lives worrying about it - so in this case better not knowing. On the other hand I'm the sort who would be worrying about it all the time until I had the test.

You never know how you would react until you do the test.

I THINK I read there is an hereditary part but v.rare (NOT SURE!!!) - do not take this as fact..

One thing it would be wise to take your mum to get a physical health check, so many things can be controlled that MAY delay the onset: high cholesterol, high blood pressure, obesity low iron/B12 - some of these can be treated v.easily.

Could you get her to go, and not discuss dimentia but get the above checked?

Having said that If I were in your mum's position - I'd be so so scared.

 

[timthumb]

hi
i think time will tell.....gentle prompting and persuasion maybe, after all it is up to mum and she does have to decide for herself

my dad went easily as he had a lot of memory problems....but more recently he doesnt really comprehend the he has alz

im sure mum will come to realise in the end what is best for her........

maybe you could see what the gp suggests if he/she knows mum well ?
tim

 

[amyjane1]

Thank you so much for your comments. I understand completely all your points of view, I know it's a really big thing, to have genetic testing because I am almost contimplating my destiny so young, however I also have a 3 year old daughter, and it's scares me silly to think that she may get it when she's older, certainly when you look at our backgrounds, and if there was any treatment or if she had to take a pill a day when shes older to warn off the disease, to me it would be worth it. And also for me, as I am of the opinion that if it was genetic, then I can only have received it from my parents, and if anything if my mum got an early diagnosis then it could make all the difference to the amount of time we have together before the disease takes hold xxx

 

[Grannie G]

Hello amyjane

Before you decide to have genetic testing, if you decide to have it please think very cafrefully of the implications.

Is there any point in having genetic testing while there is no cure and no way of preventing onset.
How would a positive result affect the quality of your life, knowing as yet there is no cure.

If you are afraid your mother has the condition, just have as much quality time with her as possible.
Even if she does not have the condition, it`s no bad thing to have as much quality time with her as possible.

It might be easy for me to say but I would only consider testing for any condition if I was sure I could remedy it in any way.

 

[Flower_fairy]

Hi,
I wouldnt like to say whether I would have the test or not but if you were to have it I would hope it would find you have nothing to worry about, but if the news was bad then at least you can think now about putting an advanced directive in place to say in what situation you would want to be treated, things you would want things you dont want which have to be carried out by the professionals dealing with your care in the end. This may be from my view the only positive of having the test done. Personally I would rather not know x

 

[Margaret W]

Dear Amy, I suspect any test will only tell you that "maybe" you have a predispostion to Alzheimers, which means you might, or you might not. No test can tell. And even if it did, there is nothing to indicate how old you might be when you get it.

I'd personally not do it. There's no treatment for Dementia, so no point in knowing whether you might get it. Just take pot luck on it.

Sorry if that sounds harsh, but I think it's right.

Love

Margaret

 

[Cally1975]

Hi Amy,

I'm in a similar situation and have been debating for some time whether to find out about genetic testing.

My mother was diagnosed with dementia last year aged 62 and her mother (my grandmother) died at 59 after around ten years suffering from pre-senile dementia.

I also have young children and worry about them developing the disease later in life.

The genetic side is something that obviously interests me, and I toy with the idea of testing on and off.

I agree with the comments above that if theres' no cure, what can be gained from knowing? But sometimes I wonder if we were 'in the system' would we be available for trials/testing, would we be on the list if new drugs were developed? Also if mum had to be tested as well, it would be better to do it sooner.

Confusing isn't it?

I'm really interested to hear if you've taken this further and what you've found out.

Cally

 

[Nebiroth]

As I understand it the genetic link for Alzheimer's is very weak, although it seems that inheritance is a more important factor when the early-onset variant of the disease is concerned. Any genetic test can only reveal a predisposition to develop the illness - it cannot say for certain whether you will or not.

At the moment all forms of Alzheimers are untreatable - they cannot be prevented or cured medically. Thus the genetic test is of little practical benefit - so it really boils down to personal preference. Some people find the not knowing worse, and gain acceptance if the test shows positive. Others will spend their lives agonising and watching for the first signs.

Of course, there is always hope that in the future treatments will arise, in that case the test could prove more fruitful, espescially if the treatments are preventative in nature (which I think is quite likely).

 

[Margaret W]

Being practical, knowing you have a genetic disposition to the illness (if that can be determined) could affect insurance premiums for sickness benefits, mortgage protection policies, income protection policies, even car insurance. Think twice.

Love

Margaret