Memory Clinic de listing my husband who has dementia

[Fraisy]

Does anyone have any experience of this please? I telephoned the memory clinic a couple of days ago to find out why we had not heard anything for months and to see if my husband could have another appointment with his consultant as his condition has significantly worsened. I was shocked to learn that because I cancelled a further ACE assessment due to my husband being so upset at failing his driving assessment that the Memory Clinic have de listed him as a patient. They unilaterally made that decision without giving my husband any notice. Is this to massage their figures? I really don't understand.
Any information would be appreciated.
I should add we live in Wales.

 

[nitram]

That approach is fairly common.
The best, and maybe only, way to get him on their books again is to get the GP to make a referral.

 

[RosettaT]

My husband was discharged after 6mths once his meds were stable. They wrote to his Dr saying if he had any concerns to re-refer him.

 

[Fraisy]

That approach is fairly common.
The best, and maybe only, way to get him on their books again is to get the GP to make a referral.

Thanks for replying. i foolishly thought the Memory Clinic was a source of continuing support as dementia never gets better only worse.

 

[Fraisy]

My husband was discharged after 6mths once his meds were stable. They wrote to his Dr saying if he had any concerns to re-refer him.

We’re you aware they were going to discharge your husband? My husband only saw his consultant once via zoom and the letter that came said at the next appointment he would go through the diagnosis with him. This never happened as he was removed without any notification. I am still shocked.

 

[Banjomansmate]

I may be wrong but I imagine they considered your husband refusing to attend the ACE test meant he did the equivalent of discharging himself. If you had asked them to postpone/give another appointment date then he would be continuing treatment but as it is he has refused and they cannot insist he attends, so that’s it as far as they are concerned.

 

[Ann Pateman]

My husband was diagnosed with mild Alzheimers in early May while he was waiting to start receiving Radio Therapy for prostate cancer.

He was prescribed medication ( 5 mg of donepazil) to improve his memory and had a telephone review by the Memory Clinic nurse today, just 4 weeks after first taking it. The consultant had said that he should probably stay on that dose until after his radio therapy had ended , in 4 weeks time.

The nurse was concerned about my husband’s high blood pressure and said we should contact our GP to discuss this and that she would phone again next week.
Unfortunately our usual GP has just started a month long annual leave, so we can only get a phone appointment for next Wednesday, with an unfamiliar doctor at our surgery.

The nurse phoned again about 90 minutes later to say that the consultant was discharging my husband from the clinic and his medication would be managed by the GP.

Unfortunately, I wasn't around to join in that call, and feel rather let down by what feels like a cursory dismissal. Perhaps I’ll phone to speak to the nurse myself next week. I suppose my husband may not have remembered the full message.

 

[Violet Jane]

How much involvement a PWD has with the Memory Clinic after diagnosis seems to vary from area to area. I recollect that my mother had a few follow up appointments, perhaps over a couple of years, but that was ten years ago. I support an elderly friend (who is in a different area) who had a follow up appointment (strangely, at a different clinic) but I cancelled it due to the risk from Covid at the time. She's had no involvement with any memory service since. Unfortunately, apart from prescribing Donepezil (which is not suitable for everyone) there is no treatment for dementia, although there are medications to treat some distressing symptoms eg agitation, aggression.

I suspect that, as in other areas of medicine, there is a shortage of clinicians and, as a result, patients are discharged as quickly as possible.

 

[Fraisy]

How much involvement a PWD has with the Memory Clinic after diagnosis seems to vary from area to area. I recollect that my mother had a few follow up appointments, perhaps over a couple of years, but that was ten years ago. I support an elderly friend (who is in a different area) who had a follow up appointment (strangely, at a different clinic) but I cancelled it due to the risk from Covid at the time. She's had no involvement with any memory service since. Unfortunately, apart from prescribing Donepezil (which is not suitable for everyone) there is no treatment for dementia, although there are medications to treat some distressing symptoms eg agitation, aggression.

I suspect that, as in other areas of medicine, there is a shortage of clinicians and, as a result, patients are discharged as quickly as possible.

Yes it appears that because I cancelled his ACE test which would have been his third in as many weeks and following his driving assessment which he had failed. I thought they would understand.
it doesn’t however excuse the fact that we we’re not unformed, indeed although I cancelled the ACE test I am not even the patient perhaps if they had spoken to my husband directly?
my husband has missed out on receiving his diagnosis from the consultant and an explanation of that diagnosis. Indeed he may even have missed out on the possibility of taking medication to slow things down.
I intend to make a complaint as I am extremely disappointed that vulnerable people with dementia are just cancelled.
i naively believed that the memory clinic was a resource, a place for information and advice for when things got worse l am not absolutely sure what it’s function is and have lost total confidence in it. Does anyone know whether the consultant can be seen without the memory clinic involvement.

 

[RosettaT]

We’re you aware they were going to discharge your husband? My husband only saw his consultant once via zoom and the letter that came said at the next appointment he would go through the diagnosis with him. This never happened as he was removed without any notification. I am still shocked.

No it was shock to me, I too thought there would be more support from them. They did however pass his details to a mental health nurse that would ring us once a year to see how he was.

 

[canary]

i naively believed that the memory clinic was a resource, a place for information and advice for when things got worse l am not absolutely sure what it’s function is and have lost total confidence in it

I think the memory clinic sees itself as making a diagnosis and starting on any relevant medication (if suitable), and they see support and advice as a social function, not a medical one and therefore not in their remit Certainly in mums case there was no followup or support. I left with a fist full of leaflets and that was that. Fortunately, one of the leaflets was for the Alzheimers Society and. I found my way here, otherwise I would have had no support at all.

 

[Jaded'n'faded]

Mum was undiagnosed but after a fall and hospital stay, I moved her into a care home. They had to get a DoLS to keep her there (she kept trying to escape) and a temporary one was granted pending a further scan. She hadn't seen anyone about her condition at that point - it was just me saying she had dementia. (Though she'd been getting worse for a good while and after the fall it was b****y obvious.) Following the scan, a consultant from the Memory Clinic came to see her at the Care Home. He talked to her for a while but I don't think he did any tests as there wasn't much point. He then spoke to me on the phone to get some history and changed his initial diagnosis of vascular dementia to mixed (Alzhemer's + vascular)) dementia. Then he vanished from our lives, never to be seen again.

I had no idea what was 'supposed' to happen after that - it's only from reading these forums over the years I've realised that What Happens Next varies enormously. I suppose the reason is that whilst the Memory Clinic can diagnose dementia, there isn't much they can do after diagnosis because... there isn't anything that can be done.

 

[Sue741215]

Our memory clinic visits (2 only) were good in confirming diagnosis, arranging driving assessment and trying to help persuade my husband that he could not drive any more. She then discharged us back to GP as her assessment role was finished but I think she said that if we needed further help I could contact the memory clinic and another nurse could assist. She arranged contact from Alzheimers and a lady rang to offer help - I said we were ok for the time being as I had read up a lot but it is good to know that they are there. I will contact them when I need them and when I feel he is bad enough to need assessment for Attendance Allowance as even though I used to advise at Citizens Advice i think it is helpful to be able to talk through with a third party - from experience carers often underestimate the care they give in the mid stages.

I would also like to say my GP practice has been excellent so far - recently a GP patiently went through and arranged tests for about 7 medical issues that I had raised in an appointment lasting 35 minutes. I had presented them with a list before the appointment. He is actually very fit to say he has the double whammy of Alzheimers and Lymphoma but I asked for various checks including prostate and diabetes just in case. I understand they are supposed to see Alzheimer's patients once a year (in England) but perhaps due to Covid I have had to request each time.

 

[jennifer1967]

Thankyou "pork pie lady " yes its all very frustrating --- all we want is a diagnoses so we can what little help available, will not be entitled to PIP and Dwp has husband is only 63 , so we mostly will have to face it alone apart from the odd telephone call and person saying "O I am so sorry " perhaps many on here have the same experiences its a fact then me and OH will take it has it comes rain or shine alone

you can get PIP because hes working age. you cant get attendance allowance until he is of retiring age

 

[Izzy]

Thankyou "pork pie lady " yes its all very frustrating --- all we want is a diagnoses so we can what little help available, will not be entitled to PIP and Dwp has husband is only 63 , so we mostly will have to face it alone apart from the odd telephone call and person saying "O I am so sorry " perhaps many on here have the same experiences its a fact then me and OH will take it has it comes rain or shine alone

I wondered if this information wold be of any hekp to you -

Benefits for people affected by dementia

If you are living with dementia, or caring for someone with the condition, you may be eligible for some benefits if dementia affects your ability to work, or if you have extra costs because of it.

www.alzheimers.org.uk

It might be useful for you to contact the Admiral Nurse helpline -

Admiral Nurse Dementia Helpline

Call or email our Dementia Helpline/Alzheimer’s Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.

www.dementiauk.org

 

[Izzy]

Yes it appears that because I cancelled his ACE test which would have been his third in as many weeks and following his driving assessment which he had failed. I thought they would understand.
it doesn’t however excuse the fact that we we’re not unformed, indeed although I cancelled the ACE test I am not even the patient perhaps if they had spoken to my husband directly?
my husband has missed out on receiving his diagnosis from the consultant and an explanation of that diagnosis. Indeed he may even have missed out on the possibility of taking medication to slow things down.
I intend to make a complaint as I am extremely disappointed that vulnerable people with dementia are just cancelled.
i naively believed that the memory clinic was a resource, a place for information and advice for when things got worse l am not absolutely sure what it’s function is and have lost total confidence in it. Does anyone know whether the consultant can be seen without the memory clinic involvement.

I’m sorry you’re having such a hard time. i don’t know the answer to your question but think it would be helpful for you to seek advice from the Admiral Nurse service -

Admiral Nurse Dementia Helpline

Call or email our Dementia Helpline/Alzheimer’s Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.

www.dementiauk.org