Dad has dementia - my own life fears

[Toby Griffiths]

My dad was diagnosed with EOD in his late 50s. He was sectioned, and later diagnosed and put into full-time care.

There is no known history in the family apart from my dad. We were estranged, in fact he had left his second wife and family, and was living with strange people in a strange place, drinking heavily, for a few years before it happened.

Obviously I am terrified by the genetic component of this disease - for me, for my siblings, for my children in their future.

I am really interested to hear from others who have dementia in their family - do you worry about getting it yourself? Do you ever have moments when you feel you already have it?

Everyone gets'tip-of-the-tongue' phenomenon - I sometimes forget the names of famous people, or books, or albums - most people just brush this off, for me every time it happens it makes me scared it's a sign of future dementia.

I am 41, in great health, I have a wonderful life - but this fear always hangs over me.

Can anyone relate to this? Am I being irrational?

 

[canary]

I think that all of us who have had someone in the family with dementia fear this - I know I do and when I cant remember words, forget that Ive done something or got in a muddle I seriously wonder whether Im going down with dementia too.

Actually, genetic cases (even with EOD or FTD) are rare. Usually they are sporadic ie non-genetic and wont be passed on. Are there other members of your dads family who have/had EOD; his parents, siblings, nephews/nieces? It would not be likely to be genetic if there is no-one else in the family with it. Oh, and if its genetic, it is always the same type of dementia - If youve got EOD, you wont pass on Lewy Body Dementia for example.

If you are still worried, you could ask your GP for a genetic test, although you may have to pay for it privately

 

[Angel55]

My dad was diagnosed with EOD in his late 50s. He was sectioned, and later diagnosed and put into full-time care.

There is no known history in the family apart from my dad. We were estranged, in fact he had left his second wife and family, and was living with strange people in a strange place, drinking heavily, for a few years before it happened.

Obviously I am terrified by the genetic component of this disease - for me, for my siblings, for my children in their future.

I am really interested to hear from others who have dementia in their family - do you worry about getting it yourself? Do you ever have moments when you feel you already have it?

Everyone gets'tip-of-the-tongue' phenomenon - I sometimes forget the names of famous people, or books, or albums - most people just brush this off, for me every time it happens it makes me scared it's a sign of future dementia.

I am 41, in great health, I have a wonderful life - but this fear always hangs over me.

Can anyone relate to this? Am I being irrational?

Hi

I think it is a natural fear/ a natural thing to think is there? and no not irrational as long as you keep it in perspective❤️

Both my parents have had 'brain' type things. Mum from a GBM 4 brain tumour, not hereditary and Dad dementia so sometimes I wonder why both had/have 'brain things' but I will probably never know the answer. Both smoked and that is the only thing I kind of think is that relevant in terms of oxygen to the brain and all those chemicals but those are just my own musings on it.

I am not sure which dementias have that element in them to be honest. When I think of Dad, I think he lived alone and that is one of the biggest things isolation and he didn't take care of himself really long before he couldn't anymore and he had undiagnosed COPD for many years as well.

All you can do is take good care of yourself as best you can and enjoy life as much as you can. I wake up every day and think hurray I am here again for another day.

It makes you more aware of dementia in general and I am sometimes guilty of looking at other people's gaits as they walk by and looking for signs in my OH elderly parents. 😳

 

[Violet Jane]

Most of us fear getting dementia if we have a relative with dementia. Both my mother and grandmother had dementia and I'm convinced that I'm going to develop it. I don't assume that I will have a healthy old age. However, both of my relatives developed dementia in their 70s rather their 50s. I think that it's pof more concermn if a relative deveThere is lots of information available about genetic risk (some on this site, I think) and if you are really concerned you could get yourself tested. Rarely, there is a very strong inherited risk, in which case there will generally be / have been other family members who developed dementia at a young age. As well as 'pure' genetic risk other conditions which run in families eg Diabetes and high blood pressure increase the risk of dementia.

You mentioned heavy drinking. There is a special type of dementia - Korsakoffs - which is caused by heavy drinking. Heavy drinking causes a depletion of a particular vitamin but, on top of that, if the person falls a lot and suffers head injuries that will also increase the risk of dementia.

 

[Lawson58]

My husband has some type of dementia, originally diagnosed as Alzheimer’s but since considered to be non diagnosed.

His mother had full blown Alzheimer’s, exhibiting all the usual traits of the disease and died at the age of 72. My husband is now 84 years old but bears no resemblance to how his mother behaved.

His two younger brothers both have memory issues but different to that of my husband and far from needing extra care, still both lucid and independent,

I think at your age you need to live your life to the fullest, not because you may be at greater risk of dementia but simply because life is there to be enjoyed. None of us know how long we have so live one day at a time and enjoy each day.

 

[northumbrian_k]

Hi @Toby Griffiths I have answered your other post so will not repeat the detail here. In short form, the genetic/inherited component of dementia is generally small and hence worrying about it is no more sensible than worrying about any other illness, disease or unpredictable life event. My mother had dementia but it never struck me that I should worry about it affecting me. My wife's father had what was termed "organic brain syndrome" back in the 1980s. He was a heavy drinker. My wife has Alzheimer's Disease but there's no evidence that this is or is not due to genetic factors. As others have said, enjoy your life and try not to stress about the unknown future. And take care crossing the road!

 

[scotlass]

I am getting forgetful, it does make me worry at times, but then I'm nearly 80yr caring for my husband who has alzheimers....have to take on all the jobs that he once did...try not to dwell on it , but if you think you should, then get it checked

 

[Toby Griffiths]

Wow I did not expect so many responses so soon, thanks so much for sharing your stories!

I don't have anyone else to share this with really so it's reassuring to know I'm not alone...and that I needn't worry unnecessarily.

Thanks a lot.

Do any of you do anything to 'cope' with this worry? Or have you just come to terms with it?

 

[Toby Griffiths]

I think that all of us who have had someone in the family with dementia fear this - I know I do and when I cant remember words, forget that Ive done something or got in a muddle I seriously wonder whether Im going down with dementia too.

Actually, genetic cases (even with EOD or FTD) are rare. Usually they are sporadic ie non-genetic and wont be passed on. Are there other members of your dads family who have/had EOD; his parents, siblings, nephews/nieces? It would not be likely to be genetic if there is no-one else in the family with it. Oh, and if its genetic, it is always the same type of dementia - If youve got EOD, you wont pass on Lewy Body Dementia for example.

If you are still worried, you could ask your GP for a genetic test, although you may have to pay for it privately

Thank you - no-one else has it, including his parents when they were alive, his siblings, or his twin brother. It does seem like an outlier in the family.

 

[Alex1983]

Wow I did not expect so many responses so soon, thanks so much for sharing your stories!

I don't have anyone else to share this with really so it's reassuring to know I'm not alone...and that I needn't worry unnecessarily.

Thanks a lot.

Do any of you do anything to 'cope' with this worry? Or have you just come to terms with it?

Hi Toby,

My father died of EOD at 60, when I was younger I started to see the signs in him when he reached 45. I am now 40 years old and see the same signs in myself, memory issues (names, navigation, handling conversations in large groups), obsessive compulsive itchy scalp, sitting in odd positions before realising why am I sat like this?!!

I am at the start of my journey to seek diagnosis, answers.

This is pretty difficult