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How often do you see anyone from/at the Memory Clinic?

myss

Registered User
Jan 14, 2018
431
After writing up a previous post, I note that in about the past 6 years, someone from the Memory Clinic has come to see my dad three times in that time - all of them at my request and it led me to think if my dad is getting the appropriate service from his Memory Clinic. The first of those appointments was made three years after the last time he was at the Clinic for his diagnosis.

On the NHS website it says "Memory services provide assessment and diagnosis of dementia and provide ongoing support and information to people with memory problems and their carers. Memory services are specialist services for people of any age who may be experiencing memory difficulties, which includes early onset dementia."

Before reading that, I would have thought at the very least that the Clinic would want to keep a record of his decline (or any progress) and so may come or ask to see him every few months or ask his GP to make this check or check on how he is with the medications he's on. But no nothing.

I know from my Memory Clinic they can be quite busy and fully appreciate that but, even though he's self-paying, I still I wouldn't have expected him to be left to get on with it.

Does your Memory Clinic do/offer more for you?
 

SoAlone

Registered User
May 19, 2016
142
Devon
Hi Myss.In the case for my OH, the only visits I had were during diagnosis and settling on to the medication I had telephone support during a very difficult period leading up to his admission to the local Dementia assessment Unit but after his time there, and transfer to a Nursing Home 18 months ago, nothing.I am assuming that if there were any substantial change in behaviour pattern, requiring a medication change, then the Older people's Mental health Unit would be asked to assess again. Sorry I can't offer anything more positive. Nothing to stop you asking them direct though
 

At home

Registered User
May 1, 2016
12
My mother was referred to a memory clinic by her GP following a mini mental assessment test. They arranged the brain scan, and we got the Alzheimers diagnosis. She was commenced on Donepezil, and we initially had a couple of 3 monthly clinic appointments to check how she got on with it. Then the appts dropped to around 6mthly. After a few years, my mum was losing ambulatory ability, and I requested she was discharged from the clinic to be cared for by primary care, her GP. I didn't feel there was any benefit to her attending the memory clinic.
Really all they ever did, was give us a diagnosis and prescribe the Donepezil, and weigh her at each appt. They gave me some contact numbers, (charities/ carers groups) but I never used them.
My mum is now non- verbal, and bed bound and we have just completed a second annual CHC assessment, and been found to meet the criteria for funding. We have carers for three visits a day, which is completely adequate.
Our experience of memory clinics isn't that great. I just felt they were checking how we were coping, and that my mums meds weren't disagreeing with her. Nice people though!
 

Dunroamin

Registered User
May 5, 2019
34
MY personal experience is they are a diagnostic and early information service only. Following diagnosis I was seen once in a titration clinic to check my response to medication, and am now discharged from the service to the care of my GP.
 

reedysue

Registered User
Nov 4, 2014
4,713
Scotland
After a psychotic episode my mum was referred back to the memory clinic by our GP and she was then seen 6 monthly for 2 years, her last appointment was in August and we we were told that there was now very little point in continuing to see her but the doctor told me to contact him if I felt it necessary.
 

canary

Registered User
Feb 25, 2014
11,397
South coast
Mum was referred to the memory clinic from her GP, she had a scan and was seen again. We were given the diagnosis of Alzheimers at that point together with a fist-full of leaflets. She had a low heart rate so was not considered suitable for donepezil and was tried with rivestigmine, but it did not suit her, so was discharged. She was seen again after the cardiac clinic improved her heart rate (at the request of the cardiac clinic), started on donepezil, seen once more to check she was OK and then discharged. She was never seen again in the memory clinic.

I know that in some areas the memory clinic does indeed monitor progression, but in this area it seems to be a diagnosis and medication clinic.
 

Beate

Registered User
May 21, 2014
11,849
London
In east London we saw them every six months regular as clockwork, but quite frankly there was no point to these visits in the end.
 

marionq

Registered User
Apr 24, 2013
6,016
Scotland
We too did six monthly visits until I recently asked to be discharged as John was just too tired and immobile to continue. I did find the consultant a great support when discussing possible ways forward and how to access services. When I wrote to her to thank her for her services over the years she replied by offering to make a home call if I ever felt I needed it. So pretty good I think.
 

rainbowcat

Registered User
Oct 14, 2015
139
My father has never been seen by them. He was given an appt, once, about 7 years ago, but he forgot to tell anyone about it and forgot all about the appt. I only found the letter a couple of years later when I was clearing his house to move him to a new/more suitable flat. My subsequent efforts to get another appt failed.
 

RosettaT

Registered User
Sep 9, 2018
381
Mid Lincs
My OH was referred after doing a memory test at the Drs. Then he did the same test again at the psychiatry unit of a local hospital, then was referred for scan, then saw the consultant, from Drs to diagnosis took 7mths. He was prescribed donepezil but the higher dose didn't suit him, so he saw the consultant again after a month. His next appointment was 6mth later when he did the memory test again and got an improved score. That was 18mths ago. The only contact with the department since, was last May, when he had a meds review.
 

Sirena

Registered User
Feb 27, 2018
2,078
My mother was in London and she went to the memory clinic three times over the course of about two years. Each time the was a particular reason - it took until the third visit to get an MRI done. Once that had been done and she was diagnosed with moderate dementia, they didn't send any more appointments. However the CPN did visit her at home regularly (can't remember if it was every 3 months or every 6 months) and seemed to be monitoring her. There was not much point in that really as she was not on medication and didn't need their input, but nice that they kept in touch.

She is now in a CH in a different area (near me) and as far as I know the mental health team are not involved, and there is no reason for them to be. I think the memory clinics are inundated, so generally they just do the basics.
 

Jaded'n'faded

Registered User
Jan 23, 2019
619
High Peak
I have even less experience as I don't think mum was ever referred to the Memory Clinic.

She was living independently (undiagnosed), had a fall, then hospital, then I moved her into a care home near me. Six months later a consultant visited and declared her to have dementia. (No sh*t Sherlock.) No meds and AFAIK he never returned.

A GP visits 'all dementia patients' once a year. Apart from that she sees no one, nobody is even slightly interested in her current state or deterioration.

Not that I am complaining really. Nothing can be done and the decline will inevitably continue till death. It is what it is.

I think Memory Clinics have their work cut out just coping with the growing numbers needing a diagnosis. (And drugs for some in the initial stages.)
 

Palerider

Registered User
Aug 9, 2015
1,327
North West
I answsered this on your other thread @myss

As I said its patchy depending on where you live. In comparison to others we have a better service, but I still have to contact them if need be, they don't routinely call or visit
 

Dimpsy

Registered User
Sep 2, 2019
1,045
Our experience is the same as most others in this thread. Mum received support / advice and monitoring of Donepezil from initial diagnosis at the hospital, once the Memory Clinic were satisfied mum was tolerating Donepezil with no side effects, we were discharged and have had no reason to go back.

As others have pointed out, dementia is terminal; apart from attempting to slow down symptoms with the latest medication (and some dementia's don't respond to any meds), what else can the Memory Clinic do?
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
My husband was referred to a psychiatry of old age clinic by his doctor. It's similar to a Memory Clinic, I think. He was seen every week until he stabilised (took a very long time, almost a year!). Once he was put on Risperidone, he was seen every week for the first couple of months, and then every three/four weeks for another while, and then he was monitored every six to eight weeks for the next few years, until he was discharged shortly before he went in to a nursing home, by which time he only spoke now and then.
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,750
south-east London
My husband was seen by the Memory Clinic every six months. In year 4 of his diagnosis my husband had psychotic episodes and was referred to the Community Mental Health Unit by the Memory Clinic. The two services worked hand in hand with each other.

Regular monitoring then took place to make sure that my husband was coping well on his new medication. During this time checks were initially made every 8 weeks - and then at 6 monthly spells (although I could ask for extra appointments if needed).

They also worked closely with my husband's GP and advised him on what medication to prescribe.

Once stable, my husband was referred back to the Memory Clinic for 6 monthly checks - but we were able to access support from the CMHS whenever psychotic episodes arose.
 

Palerider

Registered User
Aug 9, 2015
1,327
North West
Our experience is the same as most others in this thread. Mum received support / advice and monitoring of Donepezil from initial diagnosis at the hospital, once the Memory Clinic were satisfied mum was tolerating Donepezil with no side effects, we were discharged and have had no reason to go back.

As others have pointed out, dementia is terminal; apart from attempting to slow down symptoms with the latest medication (and some dementia's don't respond to any meds), what else can the Memory Clinic do?
I agree with your outlook @Dimpsy however the Memory Cliinic in most parts employs both CPN's and psychiatrists that specialise in dementia. They are the experts and very much needed for some aspects of dementia care, and I feel they should be empowered to do more than they are able to do or able to supply. In the county where I work both these and neurologists are in such short supply the service they are able to offer has become very limited to the detriment of the communities they serve
 

Louise83

Registered User
Feb 5, 2019
45
Judging by this thread me and my mum have been lucky here in Glasgow. After diagnosis in April and medication being prescribed, we had visits every couple of weeks to monitor her blood pressure and how things were going etc, there have been a few issues with the medication so it was changed and the visits continued. We were back to see the doctor at the clinic last week for a review.
The clinic also made calls to the social etc to arrange a care assessment.

I feel a great amount of support from them, sad to read it's not the same for everyone.
 

Glokta

Registered User
Jul 22, 2019
61
I’m in Barnsley, the service is assess and diagnosis only. If you want to see them after that it’s only in emergency, and if you do contact them they explain there’s nothing they can do, but you seem to be doing fine. You don’t feel you’re doing fine? Well get SS involved, or possibly GP, or both. In fact, just go away and stop bothering me, can’t you see I’m busy.
 

Dimpsy

Registered User
Sep 2, 2019
1,045
I agree with your outlook @Dimpsy however the Memory Cliinic in most parts employs both CPN's and psychiatrists that specialise in dementia. They are the experts and very much needed for some aspects of dementia care, and I feel they should be empowered to do more than they are able to do or able to supply. In the county where I work both these and neurologists are in such short supply the service they are able to offer has become very limited to the detriment of the communities they serve
I'm behind you100% @Palerider, in fact, your comments have given me food for thought!
I replied to the thread 'Your experience with health and social care', with our honest opinion of the superb and speedy service mum/we had received from her initial diagnosis of Alzheimer's.
And then ...............nothing! We stepped into the void and were left in limbo; no suggestions of future appointments to check on progress, stabilisation - or the downward spiral. Since we attended the Memory Clinic follow on appointment (tick box) and completed the Memory Matters course (tick box) we haven't had any further contact.

It's our first time around the block with mum's dementia, we're complere newbie's; no-one else in the family has trod the same path as mum so we have nobody to turn to about everyday issues that crop up. What a Godsend finding TP has been, we have a problem, someone has been there and got the T-shirt, problem sorted and there are many other people in the same boat as us.

But going back to your comment @Palerider, yes, it's the medical backup that is missing.

One of our children has Multiple Sclerosis, every year she has a MRI scan to check for any new lesions, she sees her consultant to review meds, she also has an MS nurse who she can contact at any time.

Why aren't the same supports put in place for PWD?
If mum was routinely called for a scan to check AZ progress, talk to a clinician about any new symptoms, which might lead to a change to more appropriate medication, in turn, we would have a better idea of what mum/us face next.
Regular aftercare would give such positivity to PWD, knowing that any changes would be picked up and I'm sure would lead to a better quality of life.
Dementia affects a huge part of the population, but I suppose the nature of a condition that generally develops in later life is never going to be a disease that governments throw money at.
I'll get off my soapbox now.