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Test results from Memory Clinic

Discussion in 'I care for a person with dementia' started by Risa, Oct 19, 2015.

  1. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    I notice from other posts that people have been able to look at their loved ones brain scans or been informed of the test results (i.e. score number). How did you find out this information please? I called the Memory Clinic again this morning and asked for either an appointment to see them or for Mum's GP to be sent a copy of the results (which he doesn't have), so we can discuss it with him but they seem extremely unwilling to do either. I am therefore wondering if we have a legal right to know the information? All we were ever sent was a copy of the letter from the Memory Clinic to the GP stating Mum has mixed dementia.

    The Memory Clinic did give Mum a prescription for donepezil but due to the side effects, they agreed she could come off of them. That was over a month ago and although we were promised a follow-up appointment, we have heard nothing and when I mentioned an appointment this morning, I was told they "will see if it is possible".

    So we are left with the GP not having full details of Mum's condition and Mum having no treatment other than the amitriptyline which she has taken for years for bladder problems. Whilst they keep her calm, they were not prescribed specifically for dementia. As Mum sundowns all day and also wanders, it is very frustrating that we are getting no medical help. It is getting to the point where I wonder if it would be better if we should pay to see a consultant privately and get her re-tested/re-diagnosed so that at least we would be able to speak to a Doctor about her condition.

    Any advice would be most welcome.
     
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    I used to attend Mum's appointments with the Memory clinic with her. It was noted on her file that she agreed that I ought to be notified of any appointments or results. This was for multiple reasons though, a) my Mum was registered Blind and b) I held a registered LPA for Health and Welfare for Mum.

    If your Mum has not granted LPA or has written to give her authority to the clinic allowing them to pass information on to you, they cannot legally do so. If she has no capacity to authorise this then you may have to go down the Deputy route.

    The scores are only an indication of decline though and not solely significant if taken in isolation. The demeanour of the patient and their comprehension and general fitness are all taken into consideration.
    If you can accompany Mum to her appointments then you will get more information and perhaps reassure yourself of her status.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,338
    Female
    South coast
    Hi Risa. Im probably being a bit dim, but if you have had a letter saying that the diagnosis is mixed dementia why do you need to know all the details about the scans etc?

    Follow up from memory clinics is patchy across the country with regard to the help that you are offered, but I notice that you are in the same part of the country as mum. My mum had a scan, went to the memory clinic, diagnosis of Alzheimers, told she couldnt have donepezil (due to being too unsteady), job done. She has not been back to the memory clinic as she is not on meds and her GP has taken over her care. Im afraid thats the way it is in your area.

    TBH, her MMSE score is not important, I know that dementia is progressive, her GP will prescribe drugs to help symptoms and I have learnt far, far more from this site than any doctor could tell me.
     
  4. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    I tend to agree with canary. The test and scan results are open to interpretation and often they do not necessarily give the degree of information that people expect. I also suspect that the increasing use of the 'mixed dementia' diagnosis is sometimes down to the consultant saying that despite all the technology they actually haven't a clue about the specifics in some cases. Ultimately the most important things are to be aware of what the person can and can't do and to try to preserve what still works as long as possible and compensate, as a far as possible, for what doesn't.

    I would also highlight cragmaid's point about trying to attend the appointments with your mum.
     
  5. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    #5 Risa, Oct 19, 2015
    Last edited: Oct 19, 2015
    Thanks for your responses. I think what I don't understand is the secrecy that seems to be involved. From personal experience when you are diagnosed with cancer, the results are not keep secret from the family GP and you get more information such as the stage you are at, rather than the blanket response that you have cancer. For what it is worth, my sister and I both have POA but the Memory Clinic doesn't want to discuss the results with the patient let alone us! They made such a song and dance about Mum having a brain scan but for what purpose if Mum isn't allowed to know the results of her own scan.

    It would have been helpful for my Dad to have spoken to someone like a Doctor about my Mum's diagnosis rather than just be cc'd on a letter. He is struggling to understand it and still thinks that Mum can be cured if she stops taking medication altogether. As a family it would make a difference if we know Mum has early, mid or late stage - at present we are guessing. If we knew it would make a difference to a discussion about medication. If she is at the severe stage then instead of asking for an alternative for donezpal, it may be more appropriate to look at SSRIs.

    Feel like she has been written off :(. If the memory clinic doesn't want to schedule any more appointments with Mum, that's fine. However it doesn't make any sense for her GP not to be given her results as it would obviously give him more information when prescribing.
     
  6. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,399
    Male
    Cornwall
    When I see my consultant at memory clinic he then sends a letter to my G.P I always insist on a copy of all letters written or test results etc even if there is a cost involved
     
  7. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,490
    Female
    Near Southampton
    #7 Saffie, Oct 19, 2015
    Last edited: Oct 19, 2015
    Hereabout the main purpose of the Memory clinic seems to be for the overseeing of prscribing donapezil. If your mother no longer takes this then repeat visits would be pointless. It may be different in other areas though.

    Dementia isn't an exact disease and people will progress at different rates and in different ways, especially with mixed dementia. The stages given are usually only applicable to Alzheimer's and even then people vary considerably. Medication is of limited use once the dementia has reached a certain level so is usually stopped.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,338
    Female
    South coast

    I dont think its a question of secrecy - I think its about ignorance. There has been lots of research into cancer, but very little on dementia, so even the "experts" actually know very little. The scan appearance doesnt seem to bare much relationship to the level of cognitive ability, people (like my husband) can score very highly on the MMSE, but have quite advance dementia. There are no tests for behaviour and very few for ability to do things and a lot of the diagnosis is based on the comments of their carer eg whether or not there are hallucinations, aversion to bright lights, loud noise and other stimulants, delusions and confabulations. There are no tests for these.

    Every person who has dementia is different. They have different symptoms and presentation. Sometimes the progression is rapid, sometimes it is very slow over many years and sometimes they can be stable only to suddenly and unexpectedly go downhill. When mum was diagnosed I asked the consultant how long she had and he shrugged and said "how long is a piece of string?"

    I would recommend you contact your local Alzheimers Society and see if there are any teaching programs that might help your dad to understand what is happening. They also have things like memory cafes which he might find helpful.
     
  9. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,399
    Male
    Cornwall
    Yes Saffie memory test at the clinic do oversee the prescribing of medications prescribed by your G.P however they also support you to continue in your employment for as long as it takes or until your retirement in my case this continued for eight years
     
  10. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,359
    south-east London
    #10 LynneMcV, Oct 19, 2015
    Last edited: Oct 19, 2015
    I have always been kept informed of my husband's mini test scores, not because I asked for them but simply because I was there at the sessions. There have been several different people carrying out the test over the last 3.5yrs and all of them without fail have given the latest score at the end of the meeting without being asked for it.
    Maybe it is because my husband is fairly relaxed about the test and the fact that he has dementia and knows and accepts that things at best will remain on an even keel, but that eventually abilities will decline.
    At this stage he accepts the situation without distress but pure acceptance - I am the same at the meetings (any distress I reserve for myself, alone and in private). It may be because of this joint approach of acceptance that the professionals feel it is safe to divulge the info. Maybe if my husband presented as someone who would feel worried or embarrassed to see his score decline, or if I came across as someone on the brink of despair, they wouldn't provide info that might escalate those feelings.
    How useful is the info? I am not sure. I appreciate having it as, for the most part it backs up what I have already told the professionals whenever they ask me how I feel things have gone over the past 6mths. It also gives me an idea of what stage of the disease we are at and what I need to start thinking about in my approaches.
    The scores are just an indicator of how that person is on that day though, so not something set in stone.

    In fact, at my husband's last assessment the test was abandoned because he was struggling so much following a series of UTIs which he barely had time to recover from between each one.

    Give him the assessment today though and he would do quite well. This time last year he scored 22, he has definitely declined since then but not to the level he was displaying at his abandoned test last month. Hopefully the next scheduled one in the New Year will give more of an idea.

    I really don't understand the level of secrecy you have encountered, even if they don't say the score in front of your Mum, there is no reason not to include it in the letter to the GP. Our does that too, and hubby is sent a copy at the same time.
     
  11. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,399
    Male
    Cornwall
    When I have the different memory tests and they total the score , I always say ok we finished with that old tripe no let see what I do know at what I can actually do my reason for that is if I'm being tested on questions I wouldn't know the answer to obviously it going to be low so I alway ask some questions of my own 95% of the time they can't give the correct answer either so it not all about questions & answers
     
  12. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,359
    south-east London
    Totally agree. I think one of the funniest sessions was when my husband was asked the name of the American president assassinated in 1963. My husband couldn't bring the name to mind but told them them the exact time and location. He even knew the names of the people in the car with the president. The consultant looked stunned and somewhat confused. He had no clue if my husband was right or not (I can confirm that he was right) - but the test didn't allow for that - it just wanted to know if my husband knew the name of the President or not!
     
  13. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,490
    Female
    Near Southampton
    That's good Tony. My husband wouldn't have needed that as he had already retired early.
     
  14. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    I think attending with your mum is the key. I did not have POA for my mum ( vascular dementia) but took her to her appointments and asked her in front of the clinician whether she wanted to go in alone or for me to be with her. She always elected for us to go in together so I was then aware of the scores.
    My dad, aged 87, does not have dementia, but again elects for me to go in with him. He has poor hearing and wants me to hear what is said by his consultant so I can tell him later and he does not miss anything. I know all dad's info and with his permission they only have my phone number, again because of his deafness.
    I do not think there is any reason for them to be secretive but they need some indication the patient has allowed you to know.
    With regard to what has been said about cancer I feel sure that if a patient did not want their family to know the physician must respect their wishes.
    Tre
     
  15. Slugsta

    Slugsta Registered User

    My mum has only had 1 appt with the Memory Clinic, we are still awaiting a diagnosis. At this first appointment she was asked whether she would like a copy of all letters to be sent to me too. It seems that this does not happen everywhere :(
     
  16. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,399
    Male
    Cornwall
    Hi Saffie I was 57 when first diagnosed with Alzheimer's far to young to retire it was a difficult to remain at work and I needed the Consultant Occupational Therapists and Unison
    To support me to carry on at work it would have been easer to just give in and go but I fraught to carry on and did for eight years the Occupational Health said I was covered by DDA so my employer had to employ disabled people
     
  17. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    Thanks once again for all your helpful comments and suggestions :) I spoke to the Psychiatrist at the Memory Clinic today and she was very helpful. Finally got an answer re Mum's tests results (12 out of 30 for the short test and she couldn't complete the longer test). Also confirmed that Mum does have advanced dementia which is good to know for future planning.

    Mum should have had an appointment to go back to discuss her medication and from that, the next step would have been to either refer her back to the GP (who would then be responsible for her meds) or else the Memory Clinic would still be responsible for seeing her and prescribing meds. However due to management changes with the clinic, the appointment was overlooked. The Psychiartist was very nice and she is going to sort out either getting her an appointment or, if the wait is too long, will discharge her back to the GP. We had a long talk about meds and hopefully have agreed a way forward. She did take on-board that Mum does need to take an SSRI and agreed that amitriptyline shouldn't be used for anti-anxiety but for what it was originally described (pain relief).

    So hopefully I will get a phone call from her tomorrow to tell me what is being organised. Thanks for the suggestion to attend her appointments with either the GP or the Memory Clinic - my sister and I will be going to future appointments. I will also be asking to get copies of any tests/letters as well.

    Dad has been to the local Memory Cafe but stopped going over a few visits. Unfortunately the venue they host it in is not suitable for so many people and the issue of safety in the event of a fire has been raised as people are literally crammed together in a small room and many have walking frames/sticks so couldn't move very quickly. Both parents found it too noisy and it didn't allow the opportunity to speak to anyone without yelling over the top of someone else plus the room got extremely hot with so many folk in it!
     
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    That is all good news re the psychiatrist well done! They did a short test on my Ma at one point and she scored 13, she continued to live independently with support until the end a few years later, and she still went to a mainstream lunch club each day so I'm not a great fan of testing (they did that one without my knowing what it was when I took her for physiotherapy and I wouldn't let them put it on her record) for memory. I think test results and application to everyday life are poles apart in many cases. Still every situation is totally different.

    What a shame about the memory café - daft isn't it to have such a good idea and so much effort into running it in a place that is so difficult for so many!! Maybe they will move it now there is a risk!


    Dad has been to the local Memory Cafe but stopped going over a few visits. Unfortunately the venue they host it in is not suitable for so many people and the issue of safety in the event of a fire has been raised as people are literally crammed together in a small room and many have walking frames/sticks so couldn't move very quickly. Both parents found it too noisy and it didn't allow the opportunity to speak to anyone without yelling over the top of someone else plus the room got extremely hot with so many folk in it![/QUOTE]
     

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