Where to look and what to ask?

[mooma29]

my sister is having memory issues. she has had 3 brain scans, one in 22,23,24. They report there is no change to her brain or vascular health. she is 70. She is having what i would consider to be hallucinations. talking about people she knows/knew but saying things about them that never happened - not outrageous things. stuff like they built a new house or got a new job. if you didn't know you wouldn't find the stories strange. she is very repetitive. She is quite verbally aggressive to her husband who is not in the best of health himself. she knows who we all are, but has forgotten that some people e.g our mum is dead and asks for them sometimes. She has decided that she doesn't like her house and that we are forcing her to live in it.
My other sister took her to the GP today to try and find out what is going on. The GP just says she has to be diagnosed by the memory clinic, who she has been under since 2022. Who so far haven't done anything very much that we can see. more or less when my sisters got home from GP the memory clinic called to say they would visit in the first week of June. I would really like some advice on what to ask them, but also I wonder if there is some form(s) of dementia where there isnt a change in the brain or vascular system? because we need to know what is wrong with her before we can get her the right kind of support. Our dad had vascular dementia so we know something about that, but she isn't really like he was ( i know everyone is different). we want to help her but just dont know who what to do for the best. Her GP was nice enough, but didnt offer anything other than to tell us to ring the memory clinic.
thanks for any thoughts you might have.
Mooma.

 

[Grannie G]

Welcome @mooma29

Don`t worry about what to ask the memory clinic people when they visit. They will know how to assess and make a diagnosis.

If you want to make a note of worrying behaviours so you don`t forget, that will help.

 

[mooma29]

sadly the appointment was cancelled, and there isn't another on the horizon available at the moment. So we are doing what we can to try and secure one.
its very difficult to know what to do for the best

 

[Grannie G]

That is so disappointing @mooma29 all you can do is to continue asking for your sister to be seen Keep reminding them you are very worried.

 

[mooma29]

im nothing if not persistent. thankyou for responding to me i do really appreciate it.

 

[Grannie G]

Good luck. Don’t forget to post an update.

 

[Kevinl]

Sometime we read and never know what to write back, but once and if you get a specific diagnosis what will change?
Assuming it's nothing physical that can be treated with medication to make her better then you end in the wasteland so many of us on here have and still do.
Label it how you like, Alzheimer's, lewy bodies, vascular or whatever we all end up in the same place at the end of the day, dealing with it, somehow and often alone.
I'm not 70 until next year, but my now late wife got mixed, atypical, early onset Alzheimer's, over the years and it's been a long time I got more help from this site than any amount of healthcare professionals.
All due respect to the people who help us deal with all forms of dementia in real life and on here, but it's not something I could do full time for a living, although I was an NHS male nurse in the past, at least we sent most of our patients home all better.
Dementia is a one way trip and it can be a long, long journey. K

 

[mummandamanda]

Hi mooma29,
My mum had a brain scan that we were told showed no concerns and went on to have a diagnosis of early onset Alzheimer’s. Mums symptoms were highlighted by family members to the memory clinic, not by mum, as to her there was just a bit of forgetfulness and no other concern.

 

[mooma29]

Sometime we read and never know what to write back, but once and if you get a specific diagnosis what will change?
Assuming it's nothing physical that can be treated with medication to make her better then you end in the wasteland so many of us on here have and still do.
Label it how you like, Alzheimer's, lewy bodies, vascular or whatever we all end up in the same place at the end of the day, dealing with it, somehow and often alone.
I'm not 70 until next year, but my now late wife got mixed, atypical, early onset Alzheimer's, over the years and it's been a long time I got more help from this site than any amount of healthcare professionals.
All due respect to the people who help us deal with all forms of dementia in real life and on here, but it's not something I could do full time for a living, although I was an NHS male nurse in the past, at least we sent most of our patients home all better.
Dementia is a one way trip and it can be a long, long journey. K

I would tend to agree with you, if we were sure that is what ails her, but that is the thing we aren't. We know all her behaviour symptoms point that way, but the medics say there is nothing showing on the scans. So if it is, it is and we will do what we can to see her though it. but if it isn't, then we might need to do something different to help her, and that's our dilemma and why we feel we need an actual diagnosis.

 

[mooma29]

last evening someone from the memory clinic rang me. They basically said because her scans show no change in her brain there isn't any point in "them" seeing her, but that they might refer her on to neuro. who can do more in depth tests to see if it is something else, but would still be able to diagnose dementia if that is what it is as well. they have a group meeting on Wednesdays and the caller said she would try and get her referred at the one tomorrow. I asked what we do if she gets any worse in the meantime, and i was told you'll just have to keep ringing us back. I don't know how people who don't have anyone to advocate for them go on. It is a sorry state of affairs.

 

[mooma29]

Hi mooma29,
My mum had a brain scan that we were told showed no concerns and went on to have a diagnosis of early onset Alzheimer’s. Mums symptoms were highlighted by family members to the memory clinic, not by mum, as to her there was just a bit of forgetfulness and no other concern.

Hello
can i ask how ( method) they came to the conclusion, and how old your mum was? my Sister will be 70 in August, which doesn't feel that old these days, but I would think she is too old for an early onset diagnosis?
thanks