My mother has been diagnosed with dementia by a neurologist her doctor disagrees!

Curly Club

Registered User
Aug 1, 2013
2
0
Australia
My mother recently developed epilepsy and has been diagnosed with dementia most probably Alzheimer's according to her neurologist. I have taken over all her medical appointments as my Dad is finding it all a bit much.
She has had many tests / scans recently and we are awaiting the results. Today we visited her family doctor to fill in a form to allow my dad to get a small carers payment from the government. She conducted a short memory test which my Mum passed and pronounced congratulations you don't have Alzheimer's go throw a party.
My Dad and I did not want to embarrass / upset my mother by pointing out the ways she does not function. We care much more about her feelings than the small payment from the government.
The thing is my Mum is a really well groomed lovely 70 year old lady who passed the memory test well. However she can not leave the GP's office and walk into the pharmacy next door and fill a prescription. She can't ring people most of the time without assistance because even with the phone number in front of her she will get it wrong. If she is given an appointment date over the phone she can not put it into the calender correctly or remember to attend appointments after checking the calender. She can't work out which key opens her front door. She will pick up random pieces of paper at my house and ask if it's hers. If dropped in the street that her doctor of ten years is in she can't find the building.
She can tell me all about her Grandaughters dance recital three days prior but often repeats herself three times in half an hour.
She can't follow a recipe but still cooks. She can't remember how I like my tea.
She tries to pay for purchases with the wrong card and leaves her shopping behind. She is finds it impossible work out how to give the correct money at the cafe in spite of prompts by the waitress.
The above is just a small snippet of her memory problems.
Of course in fairness her family doctor doesn't see any of this.

I have come here to ask. Is this typical of Alzheimers or does my Mum possibly have some weird sort of out of the box dementia.
By the way she had lots and lots of electric shock therapy in her 40's and her memory has been dodgy since however now it's reached another level.
All feedback would be most gratefully received.
 

Forestridge

Registered User
Feb 10, 2013
114
0
I think the thing with GPs is they rely on the memory test and that's it. That works well picking up Dememtia in some but not in others. Our GP thought Mum was fine for ages and other family members who hadn't seen her did too and it was only when a District Nurse noticed problems seeing her at home that a referral to the Memory Clinic.

At the Memory clinic they took Mum's history from her, there was a questionnaire for me about whether daily living tasks were affected plus the memory questionnaire (MMSE) another called the Addenbrookes Cognitive Examination (ACE-R).

My Mum scored incredibly well in the MMSE, 29 out of 30 which is a normal score. However she got 68/100 on the Addenbrookes where the cut off is 82. She then went onto have a CT scan and received a formal diagnosis of mixed dementia the middle of March. Sadly at the beginning of July the Psychiatrist found her to have lost capacity to make decisions regarding her accommodation . She hasn't been retested on the MMSE since January but takes Galantamine and it is feasible that her score is still high.

Is it worth writing to the GP to put in writing what the neurologist said, that you accept that she is scoring well on the Memory test but outline what you said here about how other daily activities are affected and in the circumstances you would like her to be referred to the Memory Clinic (or whatever similar service you have locally)?
 

Carabosse

Registered User
Jan 10, 2013
1,699
0
Get another Dr to look at your mum you don't have to stick with what the first one says, if I were you I would write a detailed letter of how your mum is and has been and give it to the Dr a few days before you visit (give them time to read it) and see how you get on.
 

Fed Up

Registered User
Aug 4, 2012
464
0
My sympathies it is an awful situation you're in but truth is probably the only route you can go down. Can you explain to the situation again to the GP (who is no expert anyway ) and ask for a referral to a memory clinic. Because even if it is embarrassing it has too be addressed because it will get worse. My mum also passed one of these test and it was a shock as she did not have her hearing aids in so would not have been able to understand anything. The test is only a guide it is not 100% and if your mum like mine has done it before she may well have known the answers from way back.
And your mum sounds like she needs a bit of help, so talk to your dad explain how your worried and that whilst it may be new to you both to most of us thousands of people with relatives who've been down this road its hard but their are sometimes medications and other resources which might be able to help. Your picture is all too familiar so please do seek more help a bit of embarrassment that is soon forgotten will be worth it if it can help your mum. I also do so hope you find some solace from some other stories on these pages.
 

Noorza

Registered User
Jun 8, 2012
6,541
0
You can also ask for a memory doctor to come to the house, mum wouldn't go to the hospital because she knew it was where they dealt with "mad people" her words not mine. The GP can refer. You don't need a diagnosis of Alzheimer's to get carers allowance. It sounds as if your mum should be on Attendance Allowance too.

Call your local council and ask them if they have someone or know of someone who can assist you with the forms. Not that you are not literate but they look for certain things and getting help with the forms can mean the difference between being granting it and not getting it. Then you can apply for carers.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Is a Neurologist not a doctor who has gone on to study and specialise? I know who I would listen to. My husband had all blood tests etc. plus MRI scan to diagnose his dementia. He consistently scored in the high 20s in his 6 monthy MMSE tests for quite a number of years.

He has now been in a nursing home for nearly 12 months.

Jay
 

Noorza

Registered User
Jun 8, 2012
6,541
0
Is a Neurologist not a doctor who has gone on to study and specialise? I know who I would listen to. My husband had all blood tests etc. plus MRI scan to diagnose his dementia. He consistently scored in the high 20s in his 6 monthy MMSE tests for quite a number of years.

He has now been in a nursing home for nearly 12 months.

Jay

The DLA would definately accept a report from the neurologist as evidence. It just depends what they say. I've just gone through the process with a friend who has paranoid scitzophrenia. The first time he got turned down the second time he got the lower rate. He is seriously mentally disabled and hardly able to leave his flat needing loads of support. It was the same person, with the same severe disability but the way you say things makes a difference.
 

Anongirl

Registered User
Aug 8, 2012
2,667
0
Hi. Your mum sounds very much like my mum who has mixed dementia. My mum has all the same problems.

She too did well on her initial memory test which made them diagnose her with depression. When you know someone well, you know when things aren't right x
 

Curly Club

Registered User
Aug 1, 2013
2
0
Australia
Wow, thank you all so much for your informative replies. You've been a great help and I feel much better.
It's a relief to know there is a place where I'm not so alone with my dear Mum's problem.

We have got an appointment to revisit the neurologist in November. Mum will have had all the scans and blood tests by then.
I will ask the neurologist to complete the carers allowance form for my Dad.

Thanks again, you are all brilliant.

It's taken me a while to reply because I was in the countryside attending a funeral of an eighty year old man who's mind was incredibly sharp but his body failed him.
Hopefully by the time my boys are old there will be spare parts for everyone, wouldn't that be nice?
 

rajahh

Registered User
Aug 29, 2008
2,790
0
Hertfordshire
My husband regularly passed the memory test getting 29/30 at each visit. I did not need a diagnosis I knew what was happening.

I filled the attendance allowance form in myself and got it before there was an official diagnosis.

It is not about memory tests it is about being able to function.

Jeannette
 

Noorza

Registered User
Jun 8, 2012
6,541
0
:p
Wow, thank you all so much for your informative replies. You've been a great help and I feel much better.
It's a relief to know there is a place where I'm not so alone with my dear Mum's problem.

We have got an appointment to revisit the neurologist in November. Mum will have had all the scans and blood tests by then.
I will ask the neurologist to complete the carers allowance form for my Dad.

Thanks again, you are all brilliant.

It's taken me a while to reply because I was in the countryside attending a funeral of an eighty year old man who's mind was incredibly sharp but his body failed him.
Hopefully by the time my boys are old there will be spare parts for everyone, wouldn't that be nice?

There is a finance section on TP you can get better help than I can give you. Your Mum should be on higher rate Attendance Allowance as she needs help night and day. You need to apply for that first, then when you get that your Dad can apply for carers. The Attendance Allowance forms have to state things in a certain way so get help with them, your council will tell you where in your area.
 

Noorza

Registered User
Jun 8, 2012
6,541
0
ps If she is not on AA now then apply and you can do carers without the medical back up though you will need it for AA.