Tuesday, April 1, 2008

Alzheimer's Disease-from bad to worse

I read today that drugs commonly used to treat some Alzheimer's Disease (AD) patients do not do any good, and may even do some harm. The BBC reported on their website that the neuroleptic drugs that are sometimes given to AD patients to control behavior, can also compromise verbal skills in patients with only mild cognitive impairment. These drugs were originally developed to treat psychosis in schizophrenic patients but are often given to elderly patients with dementia because they can control the aggression that comes with the progression of AD. This latter indication is an off-label indication since the FDA has not approved it for such use, nor has it been tested widely in the elderly. Olanzapine (trade name, Zyprexa) made by Lilly) has come under particular fire lately for inappropriate advertising and administration for off-label indications.

In 2004 the Committee on the Safety of Medicines in the UK issued a warning that Zyprexa could cause strokes in patients with dementia and recommended it not be used for that purpose. In 2004 my father died from the effects of Zyprexa while under the care of a nursing home in my home town of Newark, UK.
My father had been deteriorating from the effects of Lewy Body Disease (a type of dementia that has features of AD as well as Parkinson's like shuffling) and was taking Zyprexa daily to control aggression. I remember the day the hospital doctor told me it was his only hope. He would sit on the floor and refuse to get up, strike out occasionally and wander in the streets at night. It was explained to me that Zyprexa was his last chance to retain some some semblance of manageability as his dementia continued to progress. That same doctor told me that he 'was not in there' when he went through a phase of not talking, but of course, his family knew differently. He was there all along, but he just couldn't always show us. After he had been in the nursing home for a couple of years, the doctor decided to increase his dose of Zyprexa. He was too lively it seemed. Not for long. The day nurse increased his dose. The night nurse increased his dose. The result was a fatal overdose. The day he got the double dose, he immediately spike a fever. My mum relayed to me that his face was very flushed and he was silent. He seemed to be in pain and his urine was very dark. He had taken to his bed and could not get up. The research I was doing at the time while at Pfizer led me to the web where my suspicions were confirmed. He was suffering a rare (but is it that rare?) side effect of some anti-psychotic medications, Neuroleptic Malignant Syndrome. The high temperature brought on my the drug caused his muscle tissue to break down giving rise to the tell-tale dark brown urine color of rhabdomyolysis or muscle toxicity. He never got out of bed again and 4 months later, passed away. His medicine records were never found and my mum would not consent to a postmortem so it looked as though he just slipped away from advanced dementia. There are so many things wrong with the picture I just painted but I want to raise one that has nothing to do with the use of anti-psychotics in the elderly and everything to do with how we view dementia in the first place. A new book I am reading called The Myth of Alzheimer's questions our categorization of the disease and suggests that we over-focus on the disease labels and unnecessary treatments, and under focus on the social aspect of caring for our elderly as they progress through old age and is challenges. In his book, Dr Peter Whitehouse suggests that AD is little more than a convenient marketing empire that distracts us from the core issues with the disease which are, that we do not know what causes it, or whether it merely represents a 'normal' aging of the brain that occurs at different times in different people (a bit like some people get aching bones earlier than others perhaps...).
The book makes me wonder about my own experience with a loved one with dementia. The drugs, the quick proclamation that 'he's not in there any more' when he clearly was very much 'in there', and the fear and denial associated with his daily delusions (he was usually happy with his hallucinations, it was us that were not). Perhaps we need to learn to be more gracious with the demented. Perhaps our social systems should be more geared towards support of the elderly rather than condemnation to a disease state that strikes fear into the hearts of all of us. My dad had a good life and retained his character until the end but in a changed form. His 'disease' created another version of himself that was as fascinating as it was sad. He didn't lose himself as much as found a new self. If we had been able to grasp that at the time, we may have been better company for him in his last years.
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