Let down

sirog

New member
Jul 13, 2024
6
0
Hi
I am trying to make sense of things at the minute and feel let down by trying to find a diagnosis for my worsening short term memory problems and would appreciate any help in trying to understand the process of getting a diagnosis.
Both my parents have had dementia. My mum has just passed away and my Dad is in a nursing Home. I am not sure what type it is as I am aware dementia covers a wide range of things.
My problems are mirroring my mum's and I am struggling to remember things in the short term and going to do things and not remembering why. I put things somewhere and can't remember where. My wife tells me things and I don't recall what she has said 5 mins later. I am 56 years old and am worried about the future and have read an early diagnosis is important.
I plucked up the courage in Feb of this year to go to see the GP. She laughed at me and did not take anything seriously about what I was trying to explain. I did the short memory test and the results said review in a year.

I left it a couple of months and went back and A nurse practitioner took me seriously and arranged a CT scan. It came back with a MTA score of 2-3. I've googled this and for my age that is abnormal so she referred me to my local memory assessment service.

I got an appointment after 1 month as was told this was because of my age.

All the literature I read from them said at the appointment I would come out with a diagnosis.


This is where it all gone wrong for me.
I was assigned to a trainee GP who asked some questions about myself and I tried my best to explain them. She wasn't listening and when reviewing what I had said she had got alot of things wrong. I did another longer memory test. I was told to wit outside while she asked another doctor. I went back in and she said I was being referred to a neuropsychologist and the waitlist was 12 months and then another 6 months to see her again.
I walked out feeling empty. Is this the normal way. I am worried about the MTA score.
Sorry about the long post just after some advice
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,902
0
Kent
Welcome to the Dementia Support Forum @sirog

You have been most unfortunate in the people who have advised you and there is nothing worse than not being taken seriously.

I suggest you contact the. Helpline.


Get advice and information, whether you are worried about your memory, waiting for a referral or already diagnosed.

  • Call our support line to speak to a trained adviser
 

sirog

New member
Jul 13, 2024
6
0
Thank you, I will give them a ring. Am I right to be worried about the MTA score. All I can find on Google is that it is abnormal and should be below 1 for someone my age.

On a lighter note the assessor did not know we had a new Prime Minister and did not know who the president of the United States was. You probably can guess why I didn't leave satisfied
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,902
0
Kent
Thank you, I will give them a ring. Am I right to be worried about the MTA score. All I can find on Google is that it is abnormal and should be below 1 for someone my age.

I have no knowledge of this which is why I suggested you contact the Helpline. There`s no point in second guessing
On a lighter note the assessor did not know we had a new Prime Minister and did not know who the president of the United States was. You probably can guess why I didn't leave satisfied

That is scandalous!o_O.
 

sirog

New member
Jul 13, 2024
6
0
I have a funny feeling that I was short changed and had an assessment by someone on her first day. I did ring up and ask to speak to the consultant who I should have seen.
I did speak to him and he said sorry but I might have to wait a year to see someone.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,902
0
Kent
I’m so sorry @sirog.

I knew waiting lists were long but not that long for dementia. 😟

Do you think your GP would be prepared to push for an earlier appointment? You have nothing to lose to try.
 

Izzy

Volunteer Moderator
Aug 31, 2003
76,041
0
73
Dundee
That really is disgraceful @sirog.

I would certainly try what @Grannie G suggests and go back to the GP. Is there a GP in you practice you are comfortable with and trust? I know GP appointments are not easy but if you could speak to someone you trust it might help.
 

Collywobbles

Registered User
Feb 27, 2018
478
0
In addition to the above, is there anyone you trust who can come into the appointment with you?

My Mum insists on going in on her own, but her memory issues mean that she either forgets or confuses what she’s been told. Her GP agreed to waive her right to privacy some time ago as she’s in the mid-stages, so we can get information about what was actually said and done afterwards.

Having someone with you might focus the GP’s attention, whilst allowing you to be confident about what you remember.
 

Izzy

Volunteer Moderator
Aug 31, 2003
76,041
0
73
Dundee
I think @Collywobbles makes an excellent point. If you can have someone come with you to any appointments I think it would make all the difference.
 

sirog

New member
Jul 13, 2024
6
0
The appointment was at the memory accessment centre, all the literature beforehand indicated that I would come away with a diagnosis but I felt I wasn't listened too
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,902
0
Kent
Please put your feelings in writing to the memory assessment centre @sirog snd ask if your appointment can be put forward.

This in addition to asking your GP for help and taking someone with you next time might help you get an earlier assessment and diagnosis.

Do everything you can. Don’t hold back We are often embarrassed , thinking we are asking for special attention but sometimes if we don’t ask, we don’t get.
 

sirog

New member
Jul 13, 2024
6
0
I plucked up the courage and phoned the assessment centre yesterday.
I told them I was not happy with the assessment and felt it was not appropriate for a junior GP to conduct it. I pointed out that she did not know some of the answers to the questions I was asked and that I had come out of the assessment with more questions than answers.
I got a call back in about half an hour explaining that I would be given a new assessment by one of the senior doctors at the centre. A good result for me and hopefully they will listen this time to what I am telling them.
 

canary

Registered User
Feb 25, 2014
25,695
0
South coast
Thats an excellent result @sirog 👏

BTW, you might find it helpful to you if you take a trusted friend or family member with you to the appointment so that they can back you up and perhaps explain to the doctor in a little more detail
 

sirog

New member
Jul 13, 2024
6
0
Thats an excellent result @sirog 👏

BTW, you might find it helpful to you if you take a trusted friend or family member with you to the appointment so that they can back you up and perhaps explain to the doctor in a little more detail
I have now got an appointment next month to see a more experienced doctor and they said sorry and we would start afresh.
Today I have received the Clinic letter from the first appointment. It says I scored 77/100 on the ACE 111 test. Anyone know what that means
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,902
0
Kent
I`m delighted you have an earlier appointment @sirog and have been listened to.

I`m sorry I have no experience of the test you ask about. My husband was diagnosed in 2005 and had a different test with the score out of 30.
 

canary

Registered User
Feb 25, 2014
25,695
0
South coast
I have now got an appointment next month to see a more experienced doctor and they said sorry and we would start afresh.
Today I have received the Clinic letter from the first appointment. It says I scored 77/100 on the ACE 111 test. Anyone know what that means
As they are going to start again I wouldnt worry too much about the ACE 111 result - it is probably not accurate
 

Angel55

Registered User
Oct 23, 2023
230
0
I have now got an appointment next month to see a more experienced doctor and they said sorry and we would start afresh.
Today I have received the Clinic letter from the first appointment. It says I scored 77/100 on the ACE 111 test. Anyone know what that means
Hello ❤️

I am pleased you have got another appointment . The ACE 111 test is one part of building a picture to make an accurate diagnosis. I suspect much like any test you can pass or fail or be in between. The temptation is too google and that isn't always best either.

In my own experiences with my Dad it is good to also gather information about how things are going day to day in your life and listen to you describing how you feel and what is happening . Might be a good idea too if someone can go with you too as an extra pair of ears.