Familial Alzheimer’s Disease Reassurance

[chloehvy]

Hi all, this is my first post here!
I’m Chloe, I’m 21 and my mum was diagnosed with early onset Alzheimer’s in January, aged 53. As I’m sure you know, this has been very difficult and I still haven’t really accepted it - but I’m getting there. One thing preventing me from focusing on the present is familial Alzheimer’s.

So, I was researching on the internet and found scary facts like “most cases of early onset are genetic and familial” (I know now this is not true). But initially this scared me so I did some family history research...

My mums mum (my gran) died at 44 due to a heart attack, but showed no cognitive decline. My great gran, however, was insititutionalised with “early dementia” in the 1950s, age 51 - so she was already in the later stages by 51, whereas my mum is just a bit forgetful. Now, originally I panicked and thought this meant it was familial and that I now have a 50/50 chance of getting the disease (baring in mind doctors haven’t told me this, this is my own research). However, my great gran had two sisters who didn’t have the disease. My gran (who we don’t know if she would have even developed it) had a brother who didn’t develop the disease. My mum has two older sisters who also haven’t developed Alzheimer’s. Now, don’t they say it has to affect many members in a family? I just feel like it’s very unlikely that it’s skipped all these siblings and struck one person every generation. As well as this, my great gran (the one with early dementia - apparently) also had hypothyroidism and goitre - both can exhibit dementia like symptoms, so maybe she was misdiagnosed.

I don’t know, what do you guys think?

 

[karaokePete]

Welcome to TP @chloehvy, as said already, you should find this a supportive place.

Genes do play a role and are considered a risk factor, but it's complex. It was one of many risk factors in my wife's case of early onset.

You may be able to glean some pointers from the AS Factsheet on the matter. Just follow this link if you want to read it https://www.alzheimers.org.uk/download/downloads/id/1759/factsheet_genetics_of_dementia.pdf

 

[DeMartin]

Hi all, this is my first post here!
I’m Chloe, I’m 21 and my mum was diagnosed with early onset Alzheimer’s in January, aged 53. As I’m sure you know, this has been very difficult and I still haven’t really accepted it - but I’m getting there. One thing preventing me from focusing on the present is familial Alzheimer’s.

So, I was researching on the internet and found scary facts like “most cases of early onset are genetic and familial” (I know now this is not true). But initially this scared me so I did some family history research...

My mums mum (my gran) died at 44 due to a heart attack, but showed no cognitive decline. My great gran, however, was insititutionalised with “early dementia” in the 1950s, age 51 - so she was already in the later stages by 51, whereas my mum is just a bit forgetful. Now, originally I panicked and thought this meant it was familial and that I now have a 50/50 chance of getting the disease (baring in mind doctors haven’t told me this, this is my own research). However, my great gran had two sisters who didn’t have the disease. My gran (who we don’t know if she would have even developed it) had a brother who didn’t develop the disease. My mum has two older sisters who also haven’t developed Alzheimer’s. Now, don’t they say it has to affect many members in a family? I just feel like it’s very unlikely that it’s skipped all these siblings and struck one person every generation. As well as this, my great gran (the one with early dementia - apparently) also had hypothyroidism and goitre - both can exhibit dementia like symptoms, so maybe she was misdiagnosed.

I don’t know, what do you guys think?

You only mention your mothers mostly female relatives, remember your genetic make up is 50% from your father.
As others have said, see your GP, see if you can get referred to the genetics department that deal with dementia.
Diagnosis in the 1950’s not terribly scientific.

 

[Shedrech]

hello @chloehvy
a warm welcome from me too
it takes some while to settle into the knowledge of a recent diagnosis of a parent and all sorts of thoughts whirl round in your head - so it's not unusual for concerns about heredity to raise their heads, alongside worrying that you won't find a way to cope yourself and have the strength and patience to support your parent
so I think, give yourself some time to breath and concentrate on appreciating your mum - spend time with her when you can and share some good times - I am so glad I did this with my dad, as I have some lovely memories to sustain me
spend some time researching how you can practically help your mum eg look into Powers of Attorney - you'll know then that what you're doing will have a positive and productive result

 

[chloehvy]

You only mention your mothers mostly female relatives, remember your genetic make up is 50% from your father.
As others have said, see your GP, see if you can get referred to the genetics department that deal with dementia.
Diagnosis in the 1950’s not terribly scientific.

Very true, however this is because everyone on my fathers side is healthy and my mother’s paternal side also showed no sign of Alzheimer’s

 

[chloehvy]

Hi Carmar, thanks for replying. You’re right, I know I can only get those definitive answers from the GP - but I suppose that’s the scary part! Thanks for your support

 

[chloehvy]

hello @chloehvy
a warm welcome from me too
it takes some while to settle into the knowledge of a recent diagnosis of a parent and all sorts of thoughts whirl round in your head - so it's not unusual for concerns about heredity to raise their heads, alongside worrying that you won't find a way to cope yourself and have the strength and patience to support your parent
so I think, give yourself some time to breath and concentrate on appreciating your mum - spend time with her when you can and share some good times - I am so glad I did this with my dad, as I have some lovely memories to sustain me
spend some time researching how you can practically help your mum eg look into Powers of Attorney - you'll know then that what you're doing will have a positive and productive result

You’re exactly right, that is how I feel right now! I will look into those things, thankfully I have a brother and father to help me and mum through it all too

 

[chloehvy]

Welcome to TP @chloehvy, as said already, you should find this a supportive place.

Genes do play a role and are considered a risk factor, but it's complex. It was one of many risk factors in my wife's case of early onset.

You may be able to glean some pointers from the AS Factsheet on the matter. Just follow this link if you want to read it

So genes play a role but aren’t necessarily familial? Thanks for the information you’ve provided also

 

[AngelJ]

My husband has recently been diagnosed with early onset Alzheimer’s Disease at age 57. His dad and 2 of his sisters also developed it, but at a much older age than my husband. What is the likelihood of this being FAD?