Is it worth seeking a private referral?

[Helen58]

My mum has been referred to the memory clinic but there is a 9 to 12 month waiting list. She is 90, her memory is very poor and she is becoming more confused and "feeling lost". She recently experienced 4 days of hallucinations which was very scary for her and upsetting for the rest of us. They seem to have stopped for now. Mum lives alone in the same village as me. She copes well enough physically but is all over the place mentally and emotionally.
Does anyone have any experience of seeking a referral to a private memory clinic? Would getting a diagnosis more quickly make any difference?

 

[maggie6445]

My mum has been referred to the memory clinic but there is a 9 to 12 month waiting list. She is 90, her memory is very poor and she is becoming more confused and "feeling lost". She recently experienced 4 days of hallucinations which was very scary for her and upsetting for the rest of us. They seem to have stopped for now. Mum lives alone in the same village as me. She copes well enough physically but is all over the place mentally and emotionally.
Does anyone have any experience of seeking a referral to a private memory clinic? Would getting a diagnosis more quickly make any difference?

Sorry to hear about your mum. I'm not sure if a diagnosis would make much difference ,in our experience. Once we had the diagnosis we were referred back to our GP for care.

Have you contacted her GP about the recent hallucinations? She may have an infection or delirium.

You can still claim Attendance Allowance once she has had difficulties for six months . It's awarded on the help someone needs not diagnosis.

If she needs help in the home then contact social services for a needs assessment.
Hope your wait isn't too long although the 9 - 12 months you mention is the same in our area and seems common.

 

[Rayreadynow]

If you received a diagnosis tomorrow , what would you do with that information?

The condition will probably fluctuate which will make it more difficult to cope with for you both.

 

[SherwoodSue]

I think I would chase symptom support ahead of a diagnosis
GP - mum has been hallucinating for four days, what is to be done ?
You are blocked one way but not the other
Does mum have history of heart trouble or stroke?
You could assume vascular dementia if so and just keep going x

 

[SAP]

Unfortunately a diagnosis changes little other than knowing what kind of dementia a person has. Then it’s in the hands of the GP. I’m assuming you have already gone down the route of the GP checking for all other reasons for memory loss. Obviously any sudden change like the hallucinations need to be referred back to the GP.
Really it’s about thinking if it is worth spending her money now or waiting for the clinic to get back to you.

 

[Helen58]

Thank you for your replies.
We did go back to the gp with the hallucinations and Mum was checked out with blood tests, urine test and a head CT scan, none if which found anything other than "age related changes" in the scan. So no infection, deficiencies, tumour or bleed.
We successfully applied for attendance allowance last year, thank you. Mum has heart failure but is doing fine on her medication. She presents as "well" and in good spirits when we see the gp but as soon as she is back home it's another story!
I think I agree that there is little to be gained from a faster diagnosis and I don't think it is how mum would want her money to be spent. I guess we just have to carry on!

 

[SherwoodSue]

I wonder as mum has heart failure whether the changes you are seeing are linked to vascularisation, which can vary day to day. If the heart is pumping well there is plenty of oxygen for the brain then you are having a good day. When the heart is not pumping efficiently when the rhythm is ‘off’ then cognition suffers.

Hard to cope with sometimes as you never know what you are going to get.

 

[Helen58]

I wonder as mum has heart failure whether the changes you are seeing are linked to vascularisation, which can vary day to day. If the heart is pumping well there is plenty of oxygen for the brain then you are having a good day. When the heart is not pumping efficiently when the rhythm is ‘off’ then cognition suffers.

Hard to cope with sometimes as you never know what you are going to get.

That seems to make sense. Thank you.

 

[maggie6445]

@Helen58 , is your mum on beta blockers for her heart failure? My oh had just been taken off his as the cardiologist has said it can cause confusion , slow heart rate and can make heart failure worse in some patients. My oh was getting light headed and having falls as well as being very sleepy. Also hallucinations!
Been on the bisoprolol over 2 years!! Maybe the reason for his rapid " dementia" decline !!

 

[Helen58]

@Helen58 , is your mum on beta blockers for her heart failure? My oh had just been taken off his as the cardiologist has said it can cause confusion , slow heart rate and can make heart failure worse in some patients. My oh was getting light headed and having falls as well as being very sleepy. Also hallucinations!
Been on the bisoprolol over 2 years!! Maybe the reason for his rapid " dementia" decline !!

Hi @maggie6445
mum is on bisoprolol (I think) but her heart rate is fine and she hasn't had any falls, touch wood, or particularly sleepy, so I don't think that is an issue in her case. Thank you for raising it.

 

[maggie6445]

Hi @maggie6445
mum is on bisoprolol (I think) but her heart rate is fine and she hasn't had any falls, touch wood, or particularly sleepy, so I don't think that is an issue in her case. Thank you for raising it.

That's good. My OH has been on it as I say,for two years but it's only in the last six months that's that things have gone dramatically downhill . So it's something to bear in mind. GP hasn't mentioned it but cardiologist has this week .
Also the cardiologist wants a review of memantine dementia drug as that can have a similar effect on some.

 

[GeorgeIP]

Can anyone advise how to get a private memory assessment, please? Our local NHS clinic has a 6 month waiting list. I am worried that my wife will get worse without any treatment and may miss out being included in a trial if there is one.