Memory Clinic experience

[Risa]

Hi all

Bit non-plussed with our dealings with the Memory Clinic so would appreciate some feedback as to what we should expect from them please.

After a GP appointment in March where Mum had a memory test (and did very badly), she was referred to the Memory Clinic and went there in June. I didn't go with her but believe they carried out a few more tests and she then had a brain scan. There was an appointment with the Memory Clinic in early July but when Dad took Mum there, apparently some report hadn't been completed and they hadn't got the scan results back so couldn't give a diagnosis. The Dr said that if Mum had VD then there was no treatment but if she had AD there were tablets available. Dad asked about potential side effects of medication (bearing in mind Mum takes other meds) but the Dr was pretty dismissive and said Mum will be fine, don't worry. That was the end of the appointment.

So yesterday Dad received a letter detailing Mum's results (she has Mixed Dementia) and the letter stated Mum would get a month's prescription for 5mg of Donepezil and if she gets on ok with that, she will be moved to a 3 month prescription for 10mg. The prescription is coming from the Memory Clinic but the 10mg will be from her GP as she will be referred back there. An appointment with the Memory Clinic will also be scheduled in about a month's time to see Mum again.

Now I am really surprised that the results weren't given face to face. We have lots of questions (such as how far advanced Mum is, what her scores were on the tests) and also concerned that with the interaction of one of meds she takes daily with Donepezil. I just cannot believe that we are going to have to wait another month or so before we can talk to anyone about her diagnosis and we are just supposed to give her the Donepezil in the meantime (although we won't do this until we find out it is safe to). Is this the normal experience of Memory Clinics? It feels to me that they giving Mum a tablet and pushing her out of the door

 

[pipd]

Snap

Hi
my experience with the Memory Clinic was very similar. I very much feel 'dumped' by them. My mum was put on the same regime of tablets and once she was up to the 10mg dose we were told she would be seen in a year !!!
I had to chase that appointment several times as there was no contact from them at all. I eventually managed to sort one out which took us well over the year in the end. It was a pretty pointless appointment and not much was said that hadn't been said before, the same old questions were asked of my mum and I felt the whole experience was a complete waste of time and nothing suggested by them was very personalised. All in all we have had a very disappointing experience with our Memory Clinic and I'm not quite sure where to go from here.

Hi all

Bit non-plussed with our dealings with the Memory Clinic so would appreciate some feedback as to what we should expect from them please.

After a GP appointment in March where Mum had a memory test (and did very badly), she was referred to the Memory Clinic and went there in June. I didn't go with her but believe they carried out a few more tests and she then had a brain scan. There was an appointment with the Memory Clinic in early July but when Dad took Mum there, apparently some report hadn't been completed and they hadn't got the scan results back so couldn't give a diagnosis. The Dr said that if Mum had VD then there was no treatment but if she had AD there were tablets available. Dad asked about potential side effects of medication (bearing in mind Mum takes other meds) but the Dr was pretty dismissive and said Mum will be fine, don't worry. That was the end of the appointment.

So yesterday Dad received a letter detailing Mum's results (she has Mixed Dementia) and the letter stated Mum would get a month's prescription for 5mg of Donepezil and if she gets on ok with that, she will be moved to a 3 month prescription for 10mg. The prescription is coming from the Memory Clinic but the 10mg will be from her GP as she will be referred back there. An appointment with the Memory Clinic will also be scheduled in about a month's time to see Mum again.

Now I am really surprised that the results weren't given face to face. We have lots of questions (such as how far advanced Mum is, what her scores were on the tests) and also concerned that with the interaction of one of meds she takes daily with Donepezil. I just cannot believe that we are going to have to wait another month or so before we can talk to anyone about her diagnosis and we are just supposed to give her the Donepezil in the meantime (although we won't do this until we find out it is safe to). Is this the normal experience of Memory Clinics? It feels to me that they giving Mum a tablet and pushing her out of the door

 

[lin1]

I have no experience with memory clinics. My mum just saw a psychiatric consultant.
But what has happened with you and your family seems wrong to me .

I would discuss your concerns with mum's GP.
Sometimes doctors ect have problems with confidentiality and can refuse to discuss another person with you, though they should listen to what you say, to prevent this happening.
IMO it would be a good ideaif Mum is willing, to write a letter which mum signs ,giving the doctors permission to discuss everything with you and your dad , do use your names and relationships , I would also include that this can only be rescinded in writing by myself (mum) in writing.
Hand this into the GPs practice , I would also do a few copies to give to other professionals mum may be seen by who are not at the practice.

 

[Grey Lad]

Our mum had been attending a memory clinic for the past three years with an appointment every 6 months just basically to see how she was, and how we was coping and to issue another prescription for her memory tablets. (Mum is now advancing towards middle to late stages of AD). Our last appointment was March this year, and because the memory tablets are no longer having an effect on the AD the doctor signed us off saying he no longer needed to see her as his job was done on issuing medication, gave us a business card in case we need a care home sorting, as he told us by next March 16 she will need more than the carers and us to look after her in her own home! So I felt myself and my sister were very much left to "get on with it", as there was no more the medical profession could do. Felt very much left in the lurch so to speak.

Just the same here and being left in the lurch is very difficult indeed.

 

[tre]

Here in Herts things are very similar. With my mum, once the medication was stopped then all contact with the consultant/ memory clinic was also terminated and she was returned to the care of the GP which was no regular reviews. If the GP decides there is an issue which needs consultant imput you then wait months for a new referral as the case is closed.
Since mum was discharged Herts now starts you off with EMDASS early memory support and diagnosis team which does give support for the first few weeks. I think 16 weeks but this may not now be the same. All the Services seem to be shrinking due to the cuts.
I would suggest you contact your local AS branch and they will put you in touch with your local carers organisation. ( Carers in Herts who help me are great). They will help you negotiate the system. We are quite close to the border and I have seen some AS people from Essex in Harlow who were also a great help.
with best wishes to you and your mum and dad
Tre

 

[tss502]

Our experience with the memory clinic has been very mixed. It started off well, when we got the diagnosis the head of the memory clinic had us in his office for well over an hours talking us through the options re medication but also other things we should think about such as lasting power of attorney. He was very helpful and so we opted to stay with the memory clinic rather than be referred on to the young onset alzheimers team. The consultant said he would call us back in for an appointment in 3 months, but that never happened and I ended up requesting an appointment through the GP. The consultant we saw the 2nd time was much less helpful, and I got the impression that she didn't really know what she was talking about. She did follow up with some further information that I had asked for by phone, but I felt that she was just reading out to me what she had just Googled, and she offered to send me factsheets from the Alzheimer's Society which I had already found through Google myself. She has now referred us to the young onset team - and I hope we'll have a more consistent experience with them.

 

[Long-Suffering]

My dad has had dementia for at least 2 years and we haven't even managed to get a referral to the memory clinic yet! I've been badgering the Community Carer through email for god knows how long, but all I get is apologies and promises she will contact the GP and care consultant. I think my dad will be dead before we get an appointment at this rate!

LS

 

[Risa]

Many thanks for all your feedback, it is much appreciated

Got a letter ready to drop off to the GPs today asking what is needed so that my sister and I can accompany my Mum to any appointments/discuss her medical treatment. Dad goes with her but if he was unable to go we would need to step in - thanks for that suggestion lin01

Thanks Tre as well. I contacted the local AS in Harlow and the lady I spoke to was very helpful and told me that they would be getting in touch once the Memory Clinic had sent them a referral. Probably won't be until Sept as they have a backlog but it is good to know as this will provide the gateway to Mum accessing day care and Singing for the Brain etc.

Having had both parents diagnosed with cancer and seeing how much assistance and information they were given right from the get go from the hospital, it does contrast very badly with dementia when you just get sent just a letter with a diagnosis

 

[Soobee]

To be honest I think it is all mental health services, as my daughter is supposed to see the consultant neurologist for epilepsy every six months. But the last appointment was 9 months and this one will be 11 months after that. She is supposed to be having memory tests and these have a very long waiting list according to the specialist nurse.

In other parts of the NHS I have only waited between 1 and 2 months to see a specialist as a first appointment. Recently I managed to get an ultrasound scan within a week. It seems a complete lottery depending on your symptoms.

 

[tre]

While you are waiting for the referral it might be worth popping in to the Dementia Cafe in Harlow which unless they have changed the venue is at the Moot House at the Stow. Again I can recommend their friendliness and they also give out information. No-one in Herts told me they had a Sensory Services Team ( my husband has a rare dementia which starts by affecting the vision) but the Dementia Cafe in Harlow had a talk from Essex Sensory Services which put me on the trail of the Herts Service who were very helpful but rather a well kept secret. I did 'fess up that we were from over the border in Herts but they had no problem with us attending but said any trips subsidised by Essex would not be available to us
Tre

 

[Long-Suffering]

To be honest I think it is all mental health services, as my daughter is supposed to see the consultant neurologist for epilepsy every six months. But the last appointment was 9 months and this one will be 11 months after that. She is supposed to be having memory tests and these have a very long waiting list according to the specialist nurse.

In other parts of the NHS I have only waited between 1 and 2 months to see a specialist as a first appointment. Recently I managed to get an ultrasound scan within a week. It seems a complete lottery depending on your symptoms.

I agree, Soobee.

My mum was sectioned for schizophrenia 30 years ago. When they let her out she was prescribed anti-psychotics and she has been on repeat prescriptions of them for 30 years without ever again seeing a psychiatrist. Mental health care in general is ****, and from what I've seen so far, dementia patients are treated worst of all b/c the attitude is they'll never get better and they'll die soon anyway, so why bother.

LS

 

[chick1962]

I agree, Soobee.

My mum was sectioned for schizophrenia 30 years ago. When they let her out she was prescribed anti-psychotics and she has been on repeat prescriptions of them for 30 years without ever again seeing a psychiatrist. Mental health care in general is ****, and from what I've seen so far, dementia patients are treated worst of all b/c the attitude is they'll never get better and they'll die soon anyway, so why bother.

LS

LS I so agree with you! We went for our appointment today and yet again new nurse? Consultant has left again and new one ( 7th in 2 years) is starting in Sept. John got asked various questions and when he answers she kept on saying I have to move you on???!!!! If that's the ppl who are dementia trained then God help us. Box ticking exercise again john was upset and I am fuming!


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[mavismavis]

what for the memory clinic

hi, first time on here. my mum has recently been diagnosed with 'mixed dementia' at the local memory clinic. she was prescribed Donepezil tabs but didn't get on with them cos they made her throw up. So she was then prescribed the dermal patch form of same drug. we tried this for a little while and all along i found myself feeling uneasy every time i stuck one on her. The uneasiness stems from putting a drug into my nearest and dearest that i understand only sometimes works. so i discontinued it, cutting it down gradually. what i'm a bit shocked by though is when i took mum back to her last appointment at the memory clinic, when i said we werent continuing donepezil the doctor said there was nothing more they could offer. at the time i was a bit taken aback by this but said nothing.
my question is, what, actually is the point of these so called memory clinics?
i also felt uneasy about the memory tests that my mum was asked to do. demeaning springs to mind.
i would like to hear other peoples experiences
thanks

 

[Kevinl]

Hi Mavis, welcome to TP
As you can see from the thread pretty much everyone's experience is the same, diagnose you and dump you.
Given that there's nothing other than getting the medication right there's nothing else to be done by the NHS. Were it some illness with a cure the OK but there isn't and there's simply too many people affected for them to cope so they leave you to cope and wait for a crisis.
I take my wife to the memory clinic ever 6 months she can't do the test or say anything meaningful about how she feels, all a bit of a waste of time really but it keeps the NHS busy I suppose.
On the basis there is no help we just get on with our lives, the situation is what it is and there's nothing to be done so we just get on with it.
K

 

[fizzie]

I think memory clinics are appalling. I am in herts too and they have just changed our system which appears to be just as rubbish as the first one! i think now the emphasis is on numbers - how many people can we diagnose and how quickly, what we do with afterwards doesn't matter!! Thank the Lord for the voluntary organisations - well as long as they don't start colluding with the NHS and remain independent.

Carers in Essex are your carers org http://www.carersinessex.org.uk
that might be helpful

If they have any carers cafes do go they are wonderful places for support and help

These people are useful too in your area
http://www.carerstrustcrossroadsehhr.org

and as well as the AS helpline Age uk also operate a freephone 365 days a year on 0800 169 2081

Hope some of these are useful add ons

 

[Slugsta]

There seems to be a huge difference between what the patient/carer wants from Memory Clinics - diagnosis, management, information and ongoing support - and what they actually get. It would be interesting to know what the Clinics (or rather, the people who staff them) believe to be their remit - I suspect it will not be what we think!

Sorry, I know that is not at all helpful

I am currently awaiting an appointment with the Memory Clinic for my mum, at least I know better than to expect much from it.

 

[pitufi]

I remember being told by the doctor at the memory clinic in a terribly roundabout way that my mother might have alzheimer's. thats the best diagnosis she's had since.

On that same appt she was prescribed donezepil, and the doctor asked me if i had any questions!

For a start, ive never had to take medication and neither did my mom so i wasnt even aware at the time of the side effects that may manifest, and there was a couple, two still to this day that bother my mother a lot.

how can i ask questions that i didnt know i should ask? she told me to read the website and that was that.

i think it took me almost a year to understand the severity of alzheimer's. my mother being a proud person hid most of her symptoms and underplayed forgetfulness, at one point i even felt like that appt at the memory clinic was a dream, that it didnt happen, yeah my mom was forgetting stuff but no more than usual i felt, it was only later on after a 3rd appt when we spoke with a different doctor that they really drove home how much help my mom needed now and in future.

I wish i'd had the second doctor be the only one we spoke to, he was much nicer, gentler and compassionate, and offered information i didnt know how to ask for.
she now has a mental health nurse do home visits and it's so much easier for my mother to know the same person will be visiting her and, they really like eachother.

 

[di65]

My dealings with our Memory Clinic have been vastly different. When the GP referred us, we had an appointment within two weeks. The doctor we saw holds the Clinic every Tuesday and is in fact a GP in her own right, but a specialist in dealing with Dementia.
She is very professional and really takes an interest in her patients. We initially had appointments every six months, but they increased to every four months as things progressed. She took an interest not only in Lex's welfare, but also mine and referred a care support person to visit us and also organised the Day Care Centre twice weekly. Lex's GP also had a three monthly check-up system in place and the GP and MC doctor were in contact regularly. When I raised the white flag and admitted defeat in caring for him, the MC doctor arranged everything - right down to getting the Day Care people (he was there that day to take him to the Care Home. I can't speak highly enough of them. I did drop of a chocolate cake to thank her for her help

 

[fizzie]

My dealings with our Memory Clinic have been vastly different. When the GP referred us, we had an appointment within two weeks. The doctor we saw holds the Clinic every Tuesday and is in fact a GP in her own right, but a specialist in dealing with Dementia.
She is very professional and really takes an interest in her patients. We initially had appointments every six months, but they increased to every four months as things progressed. She took an interest not only in Lex's welfare, but also mine and referred a care support person to visit us and also organised the Day Care Centre twice weekly. Lex's GP also had a three monthly check-up system in place and the GP and MC doctor were in contact regularly. When I raised the white flag and admitted defeat in caring for him, the MC doctor arranged everything - right down to getting the Day Care people (he was there that day to take him to the Care Home. I can't speak highly enough of them. I did drop of a chocolate cake to thank her for her help

Hi there I see you are in NZ - here in the UK we need models like this which work exactly as they should do - absolutely brilliant so pleased you had such a 'joined up experience'

 

[tigerlady]

My OH was also dumped by the memory clinic - after years of trying to get him there, I eventually got him to an appointment in Feb 2013, and he scored 8,and was told very abruptly by the psychiatrist that he was taking his driving licence off him and that there was no medication that would help someone with such a low score!

To say we were devastated was an understatement! If I had know how it was going to be I would never have taken him.

Eventually our CPN told our GP to prescribe diazapan and temazapan to help with the aggression and sundowning (which it didnt) and later in May 2014 the CPN and an Age Uk helper managed to get him to a hospital to have a brain scan where he was finally diagnosed with Alzheimers and some vascular dementia (I could never get him to go)
In June 2014 he was sectioned and was put on memantine as they said he was too far gone for aricept to do any good, although from some posts here, I have read that aricept did help people with moderate dementia, and slowed it down.

My opinion of the memory test is that it is not a good tool for diagnosing how advanced the dementia is. My OH would have had a low score on that even if he had been ok as he is a practical man - and not used to answering quiz like questions, or questions he doesnt see the point of. I have since read books by Graham Stokes, who also does not have a high opinion of memory tests.