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I was diagnosed with dementia by a psych-geriatrician in Hobart in April of 2008; my diagnosis was dementia probable Alzheimer’s.
She based this diagnosis on my test scores previously given to me by a Neuro-psychologist, the Mini-Mental and other dementia tests. She started me on Aricept that day. I continue to see her on a regular (every 6 months) basis. At those visits, she evaluates any progression of the disease.
Because my progression has been so slow, I continue to take Aricept under her direction. She and I are convinced that the Aricept has helped me improve my functioning and slow any decline. I also offer as evidence of my slow progression that I prepared this statement on my own even though it took me over 3½ hours to complete the task.
Furthermore, I want to discuss the over reliance of the government’s use of the Mini-Mental to evaluate dementia progression despite considerable limitations.
First, it is well documented that the Mini-Mental produces false positives for people with low levels of education and/or from a CALD background; it also produces false negatives for people who are under the age of 65, highly educated, and/or very intelligent.
Second, the scores of an individual vary considerably from day to day.
Third, there are many inter-rater reliability issues depending on how individuals giving the test score particular items.
Fourth, the test itself is available on the internet and I know individuals who have downloaded it and practice taking it to improve their scores to maintain their prescriptions of anti-dementia drugs.
There are numerous dementia tests that are more reliable and valid including the ADAS-Cog and the ACE-R (Addenbrooke’s Cognitive Examination-Revised). The government would be better served by using either of these tests instead of the unreliable and invalid Mini-Mental.
Finally I am a pensioner and thus have limited financial resources. Finding out that the federal government is considering ending my access to Aricept under PBS is my worse nightmare.
PLEASE DO NOT DO THIS!
It will be very difficult to afford my anti-dementia medication and if the government ends any PBS payments, my eventual decline and death will be hastened by this decision.