Testing
Our history of diagnosis and monitoring of my wife (J.) is exemplary, based on my reading of the recent National Audit Office report:
May 2006: visit GP with concern that J. has thyroid problem (as her mother did). GP (a trainee - our practice always has 2 or 3 working) runs physical checks, takes blood sample and asks us to make special appointment for 2 days hence. Completes a shortened mini mental state examination (MMSE); tells us sympathetically he fears dementia and will arrange for J. to see a specialist consultant (old age psychiatrist).
June 2006: Consultant makes appointment for CT scan and appointment to visit us at home one week later. During home visit consultant conducts MMSE and Addenbrookes Test. (I had also provided her with written observations from our son and daughter-in-law, my sister and brother-in-law and me). She discusses results and gives probable diagnosis of early and rapid (6-9 months since start) on-set AD. She also set out, with approximate timings, what will be done in coming weeks to check diagnosis, suitability of medication, weekly session in memory clinic and social services support (importantly organising a care manager). She also recommends a book for me to read and provides contact information for local Alzheimer's Society.
July 2006: SPECT and MRI scans. Attendance at memory clinic. New consultation at memory clinic with confirmation of diagnosis and recommendation to start Aricept - 5 mg. for 1 month and, if no side effects 10 mg. (there were no side-effects at all).
August - October 2006: 3 Home visits by psychiatrist colleague of consultant to assess J.'s writing (she is published author); painting and embroidery (she has held exhibitions and won prizes).
September - November 2006: Neuropsychological testing - 4 home visits each of 1-2 hours (I suspect this equates to Zebb37's "6 week long psyche tests"). The purpose of the testing was to determine whether or not there were congition functions that were less damaged and which could be used to help keep other functions operational as long as possible. The tests involved Weshler Test of Adult Reading (to help with the estimate of pre-morbid ability - very high); Weshler Adult Intelligence Scale to determine intellectual functioning; Adult Memory and Information Processing Battery to determine memory functioning; Trail Making Test to determine executive functioning. Sadly the results showed very significant and consistent loss of performance (40 - 60%) with the best being verbal tasks. Psychiatrist commented that story-telling was far above what would be expected (Even in May, J. could no longer write with correct syntax and only with childish vocabulary)
November 2006: I requested a second opinion through the GP who liaised with the consultant to minimise need to re-run tests and to ensure that she did not have concerns that I was dissatisfied (quite the reverse). The consultant recommended a leading specialist (psychiatrist) who runs a clinic in Newcastle upon Tyne and within 3 weeks we saw him together with his psychologist colleague. J. was examined for over 2 hours including MMSE and Addenbrookes tests (same scores as in June). Diagnosis was confirmed. Three points made: 1) "There is nothing that can be done for J. except loving care". Social services will be of more value to us than medical resources; 2) Aricept has not had a significant effect, but since there are no side-effects might as well continue. However, we should expect to see a consistent, gradual decline followed, at some probably not too distant point, by speedy, significant worsening 3) it is very unlikely that the neuropsychological tests will show any significant variation - if they do it would be worth re-visiting the clinic (at this time the results noted above were not available).
February 2007: Meeting with consultant with shortened MMSE test together with reports from memory clinic, social services and me. Agreement of consistent, gradual decline; memory clinic no longer of value; will arrange for social services to take J. out 2*3 hrs per week to further assess her condition. Although prognosis is very difficult (far more difficult than with cancer) I should plan on the basis that J. will need specialist care starting winter 2007/08; social services care manager will work with me on the options.
July 2007: Shortened MMSE test. J. is now officially severely demented. Her verbal skills are far above what would be expected - she is still able to use stock phrases, sentences and stories to react to conversation. These are not always appropriate or clear and are often repeated but the level of conversation is remarkable. Recommend to stay on Aricept (since no side effects and it might be helping); fuller consultation needed in 3 (rather than 6) months. prognosis on when specialist care will be needed remains most likely (but you can never tell); if J. expected to remain at home beyond early 2008, I should arrange for 1, ideally 2, weeks respite so as to ensure I do not start to suffer (and respite does not include doing extra of my voluntary work with UNICEF or the Church).
In parallel with this there has been an integrated programme with social services.
