Preparing for diagnosis - what do we ask / push for?

[Manchesterford]

We finally have an appointment with a psychologist! and as we have received so little support to date, and so much has been left to chance, I really want to make the most of it.

My Mum had a series of small strokes during an operation in early 2017. She came out of the operation with delirium, and several months later we were told she had a mild cognitive impairment.

We haven't received much support, or care. She has chronic anxiety, apathy, and is often confused and disoriented. Her short term memory has deteriorated considerably and she struggles to find words. She suffers with incontinence and her balance / coordination are poor.

Cognitive tests last week showed she had deteriorated to 50 out of 100 (From 70 out of 100) and we have a referral to the psychologist.

We will be requesting a brain scan as she hasn't had one in 2 years, since the delirium but what else should I be asking for? In terms of investigations, treatment, care and support?

I know I will find the meeting distressing (particularly if we do get a confirmed dementia diagnosis) but want to come away with a plan! She deserves that and so does my Dad.

Thank you for any ideas or thoughts.

 

[Beate]

Investigations are usually a brain scan, blood and memory tests, though everyone is an individual and may require additional tests.

In terms of medication, there isn't much and it's routinely only given for Alzheimer's and mixed dementia, where one element is Alzheimer's.

Care and support - nothing whatsoever to do with clinicians or even a diagnosis. You will have to contact Adult Social Services if you think she requires a care package.

 

[Manchesterford]

Thanks Beate - in terms of care I was wondering if she should have regular consultants appointment or a regular contact nurse? It has taken over 6 months to get to see the psychologist and I worried they will just abandon us again.

 

[Beate]

She should be seen every six months by the Memory Clinic but apart from maybe prescribing certain dementia medication, redoing the memory tests, asking questions and writing reports on her condition to her GP, they don't actually do much.

 

[Kevinl]

It depends on where you are, some places you go back to the memory clinic every six months as happens here, other places you are refered back to the gp.
As has been said any help will come from social services not the NHS unless it's a medical issue.
K

 

[marionq]

Ours sent a CPN - community psychiatric nurse once a month - to Monitor medication. If there was no med then in Scotland you got a Link worker instead for a year.

Again in Scotland the intention is that NHS and Social Services communicate with each other about what is needed. You will certainly be entitled to a needs assessment for her and a carer assessment for yourself as carer. That should apply across the UK.

 

[canary]

She should be seen every six months by the Memory Clinic but apart from maybe prescribing certain dementia medication, redoing the memory tests, asking questions and writing reports on her condition to her GP, they don't actually do much.

It depends where you are. My mum got her diagnosis, was started on donepezil and was then discharged back to her GP. No follow-ups

For the incontinence you can ask your GP to refer her to the local incontinence clinic
Contact Social Services for a needs assessment - things available are things like carers coming in to help with washing/showering/bathing, personal care and dressing, giving medication and making simple meals (usually heating up a ready meal). They can also help sort out day care.

Find out what is available locally - there is often dementia coffee clubs and Singing For The Brain. We have local to us a dementia hub where people with dementia and their carers can go for coffee and other social activities and there is also access to things like a podiatrist and hairdresser. Charities such as Crossroads and Age UK can offer help with housework and a sitting service (you do have to pay).

You are probably sitting there thinking - I was expecting more than this!
Im sorry to say that there is not much support for people with dementia and you have to find it yourself. I have found this forum to be the greatest resource around.

 

[AliceA]

Our new GP wanted to refer back to memory clinic but was refused as not necessary. It depends on post code like so much!

 

[Manchesterford]

Thank you all. Sadly my parents live East Anglia where public services are virtually none existent. But it is useful to know what could be offered. I feel so overwhelmed emotionally and need to do something practical!