The subjective experience of Alzheimer's disease: The anatomy of an illness as perceived by patients and families

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Abstract
The onset of Alzheimer's disease is insidious and its course progressive. It robs the person-turned-patient of sense and sensibilities and disrupts the lives of victims and family members for years. Over the years I have come to regard individuals with Alzheimer's disease and other devastating chronic illnesses along with their families as modern archetypal figures. Borrowing the words of Oliver Sacks' they are both “warriors and heroes” as well as “victims and martyrs,” whose odyssey of care usually extracts an enormous emotional, physical, and financial toll. Caring for victims of Alzheimer's disease requires what Elaine Brody and Carl Eisdorfer have described as “interminable care” as the death of the mind precedes the death of the body. Inevitably, physical death becomes a reality, and family members have described the long process of watching a loved one die as a “living funeral.” Ethical and moral decisions around care and death with dignity often present deep andprotracted crises. The grieving after death varies a great deal, butfor many family members powerful emotions ranging from guilt to anger and sadness persist long after their relative is gone. Although we have learned a great deal over the last several years, we need to know more about the subjective experience of the dementing illnesses to provide better clinical care and develop ethical standards for clinical decision making.

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