Worried mum has been misdiagnosed

[chloehvy]

Hi all,
My mum was diagnosed with early onset Alzheimer’s aged 53 in January. I’ve been learning about frontotemporal dementia recently and I’m worried she’s been misdiagnosed.

The first thing I noticed with my mum was around two years ago, she became quite withdrawn and didn’t go out with her friends as much. She would also be less receptive to me being sad and things, and would ask what was wrong less I’ve only noticed memory problems in the since last year I believe. However they are quite prominent and probably the most prominent

I’m worried the doctors have misdiagnosed owed but don’t know how I’d go about rectifying this, especially when I don’t want to stress my mum out.

 

[karaokePete]

To be honest, speaking for myself, I wouldn't worry about that too much. The only way to be accurate with a diagnosis is to base it on a brain examination post mortem. until then the diagnosis is often a best guess based on history of the PWD and experience of the Doctor.

Many people exhibit mixed symptoms and develop symptoms at different rates and along different time lines. However, in the end symptoms become more common to many dementias as more of the brain is destroyed, as it will be with all dementias.

I believe the important thing is to treat and care for the symptoms as they arise rather than worry about a label.

If you wish to do a bit of reading the various dementias are outlined in the AS Publication list that can be reached by clicking this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

The initial symptoms you outline seem somewhat like the symptoms of depression, which is a common bedfellow of dementia. There is a Factsheet about this in the Publications List.

My wife is early on-set and is medicated for depression and anxiety as well as her dementia.

 

[Kevinl]

I'm with Pete, does it really matter? At least with AZ you can try Aricept/Donepezil which might help slow it down, with FTD they might not prescribe it as it's not generally recommended.
Symptoms of either condition like; aggression, depression and things are treated in the same way as they are symptoms of both conditions but not the cause so if you're wrong but can persuade the doctors you're right then it may not be a helpful thing to do if it turns out it's you that's wrong, if they withdraw AZ medication on your say so is that for the best?
K

 

[silkiest]

I totally agree chloehv, take all the support that is offered and deal with symptoms as they arise - whatever the diagnosis the symptoms vary with each person. Make contact with Admiral Nurses and any local charities and ask for and accept any help possible

 

[Trmaskell]

Hi,
My sister at the age of 62 was diagnosed about two and a half years ago with AD. Her symptoms (to me and our family) look more like FTD, as kareokePete says it does not really matter as, sadly, there is no cure.
She has been in a care home for nearly 2 years now as she lived alone, we are all spread out over the country as a family so we visit as much as we can.
All she does through the day is eats and goes to bed. She is obsessed with eating Corn Flakes and if she had her way that would be all she would have. The care home where she is is lovely with a good choice of food at every meal.
She has deteriorated so fast in the last 2 years it quite startling. I hate saying this at her age but it will be a blessing when it finishes, there is no conversation with her whatsoever, she is very critical of herself calling herself names and saying she is rubbish because she cannot remember anything.
She has gone from being a very sharp witted, very clever (degree in history) woman into a shell of herself. We were very close as we were growing up with 4 years of age between us lots of her friends have ended up being married/partners to lots of mine. It is truly heartbreaking to see what has become of her.
I could have gone on with 4 or 5 pages of this but I know nearly all of us are in the same boat.
Try and stay positive, none of this is your fault or wrong doing, it took me a bit of time to get over the fact that it missed me but got her, just support whoever you need to but look after yourselves and your family, its very important.