1. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Can anyone tell me whether there is a correct 'time' for assessment/memory test clinic?

    We have not seen or heard from anyone since early January of this year (even that was a posponed appointment). I am not even certain that it makes any difference as no one has a magic wand. Someone mentioned that it should be every six months but I am not sure if this is 'standard' or not.

    Although it may not be possible to make much difference, it would be good to know that the Mental Health Team, or others, had some interest in our progress.

    Best wishes all Jan
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Hello Jan.

    We go every 4 months. The consultant is very good, asks how things are going, reads the ` saga` that I send a week in advance and has a general chat.

    If I have any cause for concern, I phone his secretary and we get an earlier appointment.

    And now Dhiren is attending the consultant`s memory Clinic, whilst I attend the Relative`s Support Course.

    I really cannot fault them.
     
  3. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Can you find out who is the Community Psychiatric Nurse for your area? Not sure how to do this, but you might get his/her number if you either phone the hospital and ask for the Elderly Mental Health Consultant's secretary or local social services and ask for the elderly mental health social worker. Once in touch with the CPN they should be able to arrange for somone to visit to do the memory test.

    I'm not sure how these assessments help anything along 'though. All they seem to be used for is to monitor how the disease is progressing re: memory retention. They seem to be of some use to the Consultant. However in practical terms it does not have any effect on helping to take care of the AZ sufferer (in my experience).

    You are the one in daily contact and you are able to assess any changes in behaviour. In my opinion the main carer, or family are the best monitors of this disease. Best wishes, TinaTxx
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Jan: were that there would be a 'good time'

    Sylvia has replied that they go every 4 months. When is a 'good'time.

    This awful desease progresses at it's own pace. What gives us the best support?

    Is it the support fro the memory clinic.....and eveything associated.?

    Or does our best support come from our 'piers'?. Who knows. We alone know our loved ones the best. We realise that apart from the occasiona lhelp from an antidepresssant, we are the only ones that can really 'help'.

    This is a desease where I feel only positive help can overcome. Not the desease itsself, only the outcome.

    "Together we stand etc.............................
     
  5. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi.to find out who the local CPN is,ring the local hospital and ask for the "elderly mental health unit" you should be asked wether the person you want to speak about is over 65.There are 2 seperate units dependent on age.I was told by dads consultant yesterday after the diagnosis that he will send the CPN in a few months to do the mmse again,then he will receive an appointment for the memory clinic.Hope you have some luck in locating the CPN love elainex
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    I know nothing much comes from these assessments, and they are really just for statistics, but somehow it`s reassuring to know there is contact with medics........ just on the off chance..........of what I don`t know.
     
  7. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Frequency of Memory Testing

    This (6 monthly MMSE) is required (by NICE guidelines) if the sufferer is prescribed anti-cholinesterase inhibitors (e.g. Aricept).

    It can also help with prognosis since rate of loss of cognition function as measured by MMSE is currently the best predictor of disease progression (especially rate of progression through to death). In practical terms the more accurate the prognosis the better families can prepare for eventualities. (2006 article published in US Alzheimer's Research Journal - let me know if anyone wants the reference).
     
  8. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    It might be "required" be we certainly did not, and do not, get it!
     
  9. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Thank you Petrus - I think this is what I was looking for!!

    Nebiroth: You seem to be in the same situation as me.

    I do agree that the test is not a true measure BUT I do believe there should be some contact and review in each and every case.

    Tina: thanks for your comments. I vaguely know who the CPN is but there has been little or no contact. I have a general feeling that unless we get to the critical stage no one can deal with us. The whole department is overloaded - that is a good excuse for them but does not help my feeling of 'neglect'.

    Thank you for all replies - I was trying to get a feel for how the whole 'country' deals with reviews. I come to the conclusion that there are extreme variances.

    Best wishes to all Jan
     
  10. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    National Variations

    There is a recent National Audit Office report about the huge variation in diagnosis and treatment of dementia and support for carers. You can find this (as well as the NICE guidelines - one on dementia; one on carers) on the web. If any one has problems, I can supply precise URLs.

    I have written previously on TP that I have received just about everything that I should have - GP diagnosis (a trainee!!), consultant, scans, memory clinic, second opionion, social services care manager, social services support. periodic checks by consultant and GP - here in very rural Northumberland. If it can be done here, it can be done everywhere.

    That having been said, there are huge gaps in understanding what sufferers and carers need in terms of support (see NICE report on carers) because so little research has been done. I (and the consultant and care manager have identified things that would have been appropriate for J. but they are not provided because of the lack of data showing their effectiveness - let alone value).

    I have previously made the point on TP that I consider that it is in the broad area of diagnosis and support to sufferers and carers where the society should be focussing its campaigning efforts, not on medicines which are truly effective for only a very small group of sufferers - although they should be campaigning to determine what it is about that small group that makes the medicines effective. However, nobody in the society has ever bothered to respond to e-mails, letters or TP posts. (Ironic that my sense of aloneness should be with the society - except TP - not the medical and social services systems).
     

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