Memory Clinics - How often is enough?

[Poppy17]

Hello

Can anyone tell me what the usual timetable is for memory clinics - quarterly, bi-annually etc?. I rang my mother's memory nurse today to ask when her next clinic appointment was as it's been 4 months since her last one. I was very surprised (and not too happy I have to admit) to be told that memory clinics were only every 6 months in our area (in line with guidelines). Unless there is a major problem there will be no more than this. Personally, I would say that the fact that my mother has Alzheimers in her 60's is, for my mother, myself and my family, a major problem and worry everyday.......

What I find inconceivable is that if my mother had another type of terminal illness she would certainly be seeing a health professional more than twice a year. What an inequality!

Having watched the John Suchet interviews, I have also asked whether there are any Admiral Nurses in my mother's area (North East) and have been told no......

Sorry for the mini-rant.

Poppy

 

[connie]

Dear Poppy,

We too are in an area that had memory clinic appointment every 6 months. I used the clinic as a focus point to access other services.

In themselves I never did discover just what they were intended to do, other than a sounding board for our frustrations, and a point of contact.

Lionel was just 60 when he was diagnosed. Our first contact for day care came through the Mental Health team, who ran the memory clinic.

 

[BeckyJan]

Hello Poppy:

In Derbyshire the memory tests should have been conducted 6 mthly (a requirement for repeated Aricept prescription!). David rarely had one more than once every 8/9 mths. To be honest they make little difference.

If there is a problem or significant downturn with your Mother, then I suggest you ring the Consultant.

During 6/7 yrs pre diagnosis and after, we only saw the Consultant four times Even now with David in NH with behavioural problems and at the request of GP, he still has not seen her 5 weeks later.

The excuse is she is busy!

Like you we have no access to Admiral Nurses or Crossroads - they are charitable groups and much depends on voluntary initiatives.

Is there a local Alz Society? - they may help you to locate any voluntary service in your area.

Others may post here with their experiences.

Best wishes Jan

 

[susiesue]

Hello Poppy

My husband is 67 and has been visiting our local Memory Clinic approx every 4/5 months since his original 'probable' diagnosis two years ago. We have the same ritual every time we go - ie MMSE test for him and general questions on whether he is still looking after himself ie washing etc, for me - and that's that!!! They also supply him with a repeat prescription for Aricept.

We no longer seem to be under a Consultant and really have found the Memory Clinic of no help at all. They have never suggested any support for me as his carer.

Like you there are no Admiral Nurses in this area either.

Good luck

 

[Amber 5]

I've just realised that it will be six months since my mum had her first meeting with the Memory Clinic team at her house. Since then she has had a CT scan in February and we have the second appointment on Friday 3 April (I'm hoping someone will finally discuss the scan then). I will ask when the next appointment is likely to be and let you know. Think I already know what the answer is going to be though.
Regards,
Gill x

 

[Margarita]

In themselves I never did discover just what they were intended to do, other than a sounding board for our frustrations, and a point of contact

In themselves I never did discover just what they were intended to do

I did finally found out, as I never even knew that my mother was entailed to see then yearly.

As After my first consultation with the memory nurse, who kindly tell me that there is nothing more they can do for my mother, then giving her the medication she is already on for AZ, but they did organize a Demetria nurse to come around for a few mouths , who told me all the services that was available in my LA. Then she left to work somewhere else .

A year passes, AZ day centre notices changes happening to my mother behavior.

who tell me my mother should be seeing the memory clinic twice a year , because changes does happen in the decline in the dementia , as in behaviour changes so medication needs to be reviewed, care plain needs to be higher to give me more support. It from the reports from the memory nurse that is sent to social services, to up my support while my mother is living with me.

if no one tell you anything how the services work how are you meant to know, or even understand the changes in Demetria .

Talking to someone in person to understand the changes in Demetria was helpful for me to understand what was happing, with moods, behavior changes, over the progression of the Demetria .

 

[bucko]

Memory Clinics

My husband who is 62 and was diagnosed 2 years ago has his memory tests every six months. Through the Alzheimers Support Group we were introduced to the support network. We now know that if we have a problem of any type, I ring the Alzheimers or Parkinsons Specialist Nurses who are fantastic and so supportive. From his last memory test they saw a marked decline. When I questioned the purpose then of him being left on Rigastigmine (Exelon) (as I was originally told that this would stabalise his memory at the level it was at first diagnosis) yet now I was being told it had declined and it did not appear to be doing him any good so why were they keeping him on it. I was rather anxious at this point as they then told me that as his illness fluctuates it could be that another time he would be tested, he may get better results??? This confuses me as to the accuracy of this test. I was also told by the Doctor that they wanted to keep John on this drug as if they took him off it, he may show more of a decline. This worried me significantly and I then asked my GP who told me he felt that they were airing on caution as they did not really know what the outcome would be. It doesn't make one feel that confident does it? He is due for another memory test in May and I am eager to see the outcome of this.

 

[Clive]

Hi

We went to see the Consultant at the Memory Clinic every three months for about 5 years.

The service was excellent, and we were seen within 10 minutes or so of the appointment time every time.

The clinic building was new when we started, and the Consultant had lots of bright ideas as to what would happen at the Clinic… but the ideas were never carried on past one visit.

I do not think we gained anything from going every three months.

Other than… the diagnosis… the Aricept being prescribed….. and the Aricept being stopped…. there was nothing else.

I suppose being able to tell the Consultant how mum was progressing was a type of therapy for me… but that was all. (we probably had the memory test every second visit but it varied)


Clive

 

[bear]

Hi

Like so many of you I am unsure of what benefits the memory clinics have. My dad is 60 and was diagnised a year ago after 4 years of telling doctors there was a problem. He is rapidly declining and having problems with violence and aggression and yet the consultant does not alter his medication. My father has no awareness of his condition and is seen in the geriatric psychiatric department which causes him much confusion, the consultant also asks my mother infront of him how he is.This causes much friction between them and my dad leaves angry and my mum leaves upset and helpless. I fear nothing will change with the management of my dads condition and I do not believe as yet his medication or care has benefited him at all. My mother on the otherhand is at breaking point and as he is under 65 there seems to be no help for us in our area.

 

[Poppy17]

Memory Clinics - Just As I Thought

Hello everyone

Thank you all for your in-depth replies. Myself and my baby have had a nasty sickness virus hence the delay in replying.

It is re-assuring (?) I suppose to know that we aren't being 'short changed' living in our area, if the 6 month rule for memory clinic visits is considered the norm. I am probably looking to the clinic as a form of support and I gather from your replies that this isn't its job. I will definitely be looking to tap into other support networks for extra help as I don't feel able to keep trudging on alone anymore in the AD wilderness. My mother has been having quite a bad week and her confusion is the worst its been so far - it's heartbreaking isn't it?

Thank you all again.

Poppy

 

[purtycat]

hi everyone

I had a memory test done last july and i can't have an other test done until july i hope ,

 

[jackie1]

My husband is 56 and he has been go to the memory clinic every 6 months since diagnosis and to be honest, in his case, do not feel that there is any point in going more often. All they seem involve is me handing over a list in changes a quick chat and the handing over of a repeat prescription.