discharged from memory clinic

[esmeralda]

Your consultant sounds wonderful, Marion! I think there is a lot of difference between treatment if you have AD or dementia. Agree about the value of the memory tests too, before my husband had a diagnosis I had spoken to the consultant physician at the Falls Clinic about his memory problems so he dashed off this quick test, about 10 questions, and told my husband he was doing very well. The neurological OT who seemed much more switched on did a battery of test which showed that he had severely impaired cognition! She said this often happened, the consultant told people they were ok and when she gave them the results of the more complex tests they were upset with her!

Personally I think it would be helpful for me to understand if/how fast he is deteriorating as if you don't get any input you can wonder if it's you who is imagining things. I think for him though it would just be upsetting, so on balance I prefer for him not to have to go through it.

 

[Lawson58]

My husband was diagnosed with early AD last July but had been doing these memory tests for 3 years prior to that which was when he learned them off by heart. Before he goes in for one of these, now he checks out with me what day and date it is and says them over and over to himself. The thing he messes up on is copying the shapes and repeating back the 3 words that he had been told earlier.

During these 3 years he learned to play bridge and still is though from what I hear he is perhaps starting to play poorly. He can also count backwards by 7s faster than I can do it forwards. He grew up with a bookmaker father and was one himself and still excels at numbers. Crosswords? Forget it!

Like in Esmeralda's post, Tony always does well on this test but it is the far more analytical ones that he fails and give us far greater insights into where he is at.

 

[pamann]

My husband has been doing memory test for 3yrs, we go again soon, he doesn't do very well lastime he got 8 out of 30, he doesn't mind doing the test as he likes the Dr. He is so nice my husband thinks he is just a friend, he loves going to see him. ♡♡♡

 

[Pudster]

So interesting to hear of everyone's experiences. We went to the main hospital for numerous appointments to receive the diagnosis but were told that OH would then go annually for memory clinic appointments to check progress. I think that is one of the problems I have; OHs expectation has not been met, in fact he has been discharged... so he now choses to believe that it is because there is nothing wrong with him.
I have found the last couple of years very difficult, to support him to contact DVLA, discuss PoA, writing a will (he is 71 so not shocking!) not that we have made any progress on the last two, and I very occasionally float it through a conversation.
The second problem I have with the process is that it is not person centred to the individual and (potential) main carer. TBH I would have welcomed 6 monthly clinic appointments as I have found this diagnosis to be the most isolating experience (here excluded) of my life. Particularly when OH wants his diagnosis kept secret. I have taken the force of his anger and rage in relation to his diagnosis (and mine I feel) particular triggers are around driving. He has an annual licence and health are asked to provide information. He reapplied in early Sept for renewal mid Nov and we are still waiting...because this is anxiety creating, OH cant remember that he can still drive and hasn't since his original diagnosis. Any way back to the GP to restart process, oh and we have written for local support groups, again very much a postcode lottery as to what is available in each area and a waiting list to join. Thanks for input to help me think my stuff through!

 

[pippop1]

I think there's a very good argument to say that the memory clinic should also offer separate appointments for carers to attend in order to discover hints and tips in order to cope with their partner's/parent's ongoing dementia.

Firstly to discover what the person and the carer are entitled to (we didn't know about the Council Tax exemption for years - as MIL lived on her own - until I read it on here in spite of at least two memory clinic appointments), and secondly all those little ideas and suggestions - such as not arguing and not correcting them all the time, that are obvious when you know about them.

The staff would then be performing a kind of "informed counsellor" role which would be of use.

 

[ASH74]

FIL was seen by care of the elderly (COE)....who tested his memory..only dropped 2 points...but the SPR was concerned as although he passed the test he presented as having a memory issue.

Long story short...SPR couldn't refer to the memory clinic as a different NHS trust.....asked GP to...who wouldn't as only 28/30!

After lots of hassle due to COE saying he couldn't drive (thank goodness) and then discharging him unexpectedly (I suspect because they thought he would be under the memory clinic) we finally got seen by the memory clinic. Lovely OT did the assessments, Consultant was very nice when giving the diagnosis (plus initial prescription) but then nothing apart from one nurse follow up who then discharged him back to his GP.

Consultant wrote a care plan saying very little.....we really are no further forward!

BTW FIL revises for memory tests....every prime minister etc etc......precisely when his last appointment was......he came unstuck at his follow-up at COE as he was free flowing about his last appointment with the COE consultant ....."how nice it was to meet again since I last saw you on the 4th July @ 10.30" he was desperately trying to give the impression of remembering....the thing he hadn't revised was the change of consultant from being a man to a woman......it just demonstrated how many coping strategies he was employing......quite amazing!


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[keegan2]

O/H has an appointment with the consultant every 6 months and the with the memory clinic whenever they feel like it. They make an appointment then cancel, they even cancelled one an hour before it was due. (Try explaining that to someone with Alzheimers).. Either way the appointments are a waste of time, how is he?, are you getting any help?, same old questions nearly the same answers. No, no help from anyone, have noticed his memory deteriorating. Doctors reply sorry can't do much else as he is on 10 mg of aricept daily and 10 mg twice of memantine, highest dose nothing else available. Did ask for advise on if anywhere available for husband to go to as he hates being home alone and I still work part time. Received some leaflets for Age Uk of clases in local area. (he can't go, who will take him and even if I could drop him off before work someone would have to stay with him activities such as yoga, bingo and coffee time by himself would just not work).

 

[dunlin]

Interesting to read everyone's experiences.

My dad diagnosed with mild (now moderate) Alzheimer's, was fine going to the memory clinic, I especially didn't feel like I was on my own.
He couldn't take the medication, made him very very ill
So after one visit from a CPN at home, and the suggestion of support and monitoring it all suddenly stopped and we were told to refer to the gp should things change and get re-referred again.....

I felt like we had been spat out of the system because he couldn't take the medication

I'm grateful for this website! Given me more information and support about Alzheimer's than anywhere else has

 

[canary]

This is an interesting thread as it seems as though what people expect is at odds with what actually happens.

I strongly suspect that the memory clinic sees itself as somewhere that will formally diagnose dementia, start people on medication and (probably) monitor the meds (although mums MC has referred her back to the GP for her meds). However, it seems that what people are expecting (and in the most part, not getting) is support and advice for the carer in dealing with the symptoms of dementia.

I would guess that this is something that most carers would welcome - comments on here about not feeling alone etc and, like many others, the only support and advice I have found has come from here.

In my local eye clinic there is a Sight Care Adviser who can advise patients/carers who are partially sighted or blind. She advises on benefits, visual aids, grants, help in returning to work/education and knows what support groups are out there. She is very good and will always see people for support. I do feel that there is a crying need for someone like that attached to the memory clinic who knows what is available to help and can advise on coping strategies.

 

[marionq]

Interesting to read everyone's experiences.

My dad diagnosed with mild (now moderate) Alzheimer's, was fine going to the memory clinic, I especially didn't feel like I was on my own.
He couldn't take the medication, made him very very ill
So after one visit from a CPN at home, and the suggestion of support and monitoring it all suddenly stopped and we were told to refer to the gp should things change and get re-referred again.....

I felt like we had been spat out of the system because he couldn't take the medication

I'm grateful for this website! Given me more information and support about Alzheimer's than anywhere else has

Dublin we have a system in Scotland introduced by Nicola Sturgeon when she was Health Minister - if a patient cannot take medication and has no need for a CPN they are allocated a Link Worker for a year. The link is between patient and Memory clinic. This person will advise on Attendance allowance, council tax, groups run by Alz Scotland, may well run group cafes etc. at the end of that year it is hoped that the patient and carer are in the system with a knowledge of how to access further care. The Link worker will report back to the Memory clinic consultant. I found it all very helpful but of course with cuts to funding it is much harder for everyone to access things like day care etc even if you have all the contacts.

 

[canary]

Dublin we have a system in Scotland introduced by Nicola Sturgeon when she was Health Minister - if a patient cannot take medication and has no need for a CPN they are allocated a Link Worker for a year. The link is between patient and Memory clinic. This person will advise on Attendance allowance, council tax, groups run by Alz Scotland, may well run group cafes etc. at the end of that year it is hoped that the patient and carer are in the system with a knowledge of how to access further care. The Link worker will report back to the Memory clinic consultant. I found it all very helpful but of course with cuts to funding it is much harder for everyone to access things like day care etc even if you have all the contacts.

This is exactly what I was thinking about. I wish we had someone like that here

 

[Izzy]

Dublin we have a system in Scotland introduced by Nicola Sturgeon when she was Health Minister - if a patient cannot take medication and has no need for a CPN they are allocated a Link Worker for a year. The link is between patient and Memory clinic. This person will advise on Attendance allowance, council tax, groups run by Alz Scotland, may well run group cafes etc. at the end of that year it is hoped that the patient and carer are in the system with a knowledge of how to access further care. The Link worker will report back to the Memory clinic consultant. I found it all very helpful but of course with cuts to funding it is much harder for everyone to access things like day care etc even if you have all the contacts.

Is this new? Bill was diagnosed 14 years ago and we got none of that. All my support and help has come through the Dundee Carers Centre, our social worker and most of all the local branch of Alzheimer Scotland. Much of what I have got established over these 14 years has been down to me seeking it out. No link worker! I know there is now a post diagnosis team in Dundee. Perhaps that is where the link worker comes in now.

Just thinking. Bill did have medication and attended the memory clinic but no advice was given re any support.

 

[Sue J]

Because I refuse to take medication without a diagnosis (and react badly to it also) I am seen by some as someone not willing to engage and so an attitude of we can't, won't help you seems to follow. Also I am expected to say what I need, just saying 'I need help' isn't understood very well. A link worker is what I need but where I am I don't know what they'd link up with as the social system of care is in such disarray. I muddle on as best I can, persist in trying to get a diagnosis, and what help I can and am thankful for TP and what help I do have.

 

[Pickles53]

This is an interesting thread as it seems as though what people expect is at odds with what actually happens.

I strongly suspect that the memory clinic sees itself as somewhere that will formally diagnose dementia, start people on medication and (probably) monitor the meds (although mums MC has referred her back to the GP for her meds). However, it seems that what people are expecting (and in the most part, not getting) is support and advice for the carer in dealing with the symptoms of dementia.

I would guess that this is something that most carers would welcome - comments on here about not feeling alone etc and, like many others, the only support and advice I have found has come from here.

In my local eye clinic there is a Sight Care Adviser who can advise patients/carers who are partially sighted or blind. She advises on benefits, visual aids, grants, help in returning to work/education and knows what support groups are out there. She is very good and will always see people for support. I do feel that there is a crying need for someone like that attached to the memory clinic who knows what is available to help and can advise on coping strategies.

Canary you have hit the nail exactly on the head; this is exactly what most newly-diagnosed people and their carers need. We waited 5 months for mum's first formal appointment and apart from prescribing an initial low dose of Donezepil (lasted one week owing to side effects, then nothing else offered) I ended up wondering why we had bothered.

 

[Wendy7713]

I was diagnosed with Alzheimers last July - I'm 58. I had to nag and keep ringing for an appointment with my memory clinic. I eventually got one but it was a struggle. I've now put myself forward for clinical trials and you are looked after so well with phone calls and follow up visits and checks galore. It also makes me feel useful and making a contribution to the search for a cure to this cruel disease. Think about signing up to ' Join Dementia Research' database. It's a new database on which you can express an interest to takepart in research - fully backed by the Alzheimers society.

 

[Linedancer122]

Memory clinic stopped

Yep, memory clinic stopped after about 2 years. I was told it was 'the new system!' If you want to see someone, you have to go to the gp and ask to get referred. Then it changed so that referral was to the 'access and assessment dept'. They come and see you and refer you on to whoever they consider appropriate.
My comments on this lumbering, jobs for the boys system are not printable. Continuity of care? Huh! I'm not sure who wins from this system, but it's not the patient.

My husband was diagnosed with dementia in 2009. He is on Donapresil now. The last time we went he didn't have a memory test and I was told that the idea of a memory test was if they scored 10 or below, they were taken off the medication. That goalpost has been removed now and they stay on medication regardless.

 

[Frank68]

Phew!

Again I am grateful for a thread because I always want to think it must be me / my fault! Then you discover others have had the same experience and view, as in this case.

We have had 3 CPNs assigned since Sue's AD diagnosis in 2010. No. 1 was a nurse who had done it for years - was knowledgeable, understanding and very sympathetic and we had 6 monthly appointments for the tests / reviews. She was always available on the phone and paid us several home visits. (She co-worked the sessions with assistants - who were frankly of little use!) In 2012 No.1 retired and another took over - again she was senior, lovely and saw us through some meds crises. But at the end of 2013 No 2 retired and we were put onto 9-monthly appointments. (I had the impression that both these senior nurses retired early, being fed-up with the direction in which the service was heading). Our relationship with a much younger No. 3 began with her sitting reading my wife's notes whilst she drank her coffee and then commented: "It's not really worth continuing with the memory tests". I got bundled off with the "Assistant" who was totally clueless - he had time with Sue later and at the end of it when I returned to the room she had turned her back on him - "Stupid man - he didn't say anything!". She was really upset at the whole experience, which hitherto she had quite looked forward to.
I do not really want to go again, but knowing our need of help can only increase I am nervous of cutting ourselves adrift from this channel? The Consultant, whom we have seen a coupe of times over meds issues, has been brilliant.

 

[marionq]

Izzy and others - I believe the Link worker is relatively new. Perhaps 3 or 4 years at most. I was told that when Nicola Sturgeon was Health Minister several years ago she went out with the dementia workers to see what was practical and delivered this addition to the CPNs.

As well as linking patient and Memory clinic I noticed that the Link worker would turn up at Alz Scotland groups just to see what was going on and who was using them and how. She visited us once a month for a year but I still bump into her because John and I go to quite a few groups. I think this would be helpful if rolled out in England and Wales too provided the staff were good.

 

[Sue J]

We used to have 'Link workers' in the UK, they were known as Health Visitors for the Elderly until they were taken away

 

[Izzy]

Izzy and others - I believe the Link worker is relatively new. Perhaps 3 or 4 years at most. I was told that when Nicola Sturgeon was Health Minister several years ago she went out with the dementia workers to see what was practical and delivered this addition to the CPNs.

As well as linking patient and Memory clinic I noticed that the Link worker would turn up at Alz Scotland groups just to see what was going on and who was using them and how. She visited us once a month for a year but I still bump into her because John and I go to quite a few groups. I think this would be helpful if rolled out in England and Wales too provided the staff were good.

I'm pretty sure that must be the same as our local post diagnosis team. I think they support people in their first year after diagnosis. I suppose we're unusual in that the diagnosis was so long ago - 14 years come October. I hope things have improved for people with this initiative.