by Richard Bozanich

Richard Bozanich

Alzheimer’s disease runs in my family on my mother’s side, but when an uncle or cousin was diagnosed, our relatives sequestered them so we never heard from them again. In 2006, when I was diagnosed with dementia, probable Alzheimer’s type, at age 48, I made the decision not to hide, but rather to speak out and be an advocate.

The first symptom I experienced was falling to the floor when my legs gave out underneath me. My spatial relationships were off, and I started walking into walls. I experienced auditory hallucinations, hearing sounds like music that wasn’t there. Though these symptoms are listed in the DSM-IV under associated features for Alzheimer’s, my doctor referred me to a psychiatrist, who ruled out schizophrenia and depression. I then went undiagnosed for two years as my symptoms continued.

My memory always had served me well, but I began to get lost in familiar places. Routine household tasks became baffling. Preparing meals confused me, and I found myself pouring coffee in the toaster. I also developed agnosia, a symptom where an object -- a glass of water, my wallet, even a building --would exist but I did not perceive it. I developed problems with word retrieval, and now there are times when my brain can’t tell my mouth how to speak.

I found a new physician who heard my concerns and ordered a complete workup. The MRI ruled out a brain tumor. A PET scan and two full days of neuropsychological testing led to my diagnosis. A Mini-Mental Status Exam was not an effective screening tool in my situation. I believe it is often not sensitive enough for those who are early on in the disease and who may be higher functioning.

Professionals who don’t wish to alarm their clients should be cautioned not to minimize how a patient feels when they are experiencing these symptoms. Saying, “I do that, too,” can seem glib, especially if your patient knows you can’t possibly misplace buildings or hear things that aren’t there.

‘Speaking in Our Own Voices’

I feel fortunate to have received a diagnosis because I finally had an explanation. Not knowing what was wrong with me was much worse than knowing what I’m dealing with. I went through a dark phase for two months after my diagnosis until I went to the Alzheimer’s Association, which referred me to a local support group where I met my friend Jay Smith. We decided to create a conference in Los Angeles that would be by and for people with early memory loss so people would hear us speaking in our own voices. The 2007 Early Memory Loss Forum was a sold-out success.

People are too comfortable with the misconception that this is only a disease of the old, which fosters ageist attitudes that must stop if true progress is to be made toward proper funding for research. Those of us with dementia have cognitive impairments, but we still want to be viewed as capable. Like me, several of my friends were diagnosed in their 40s. Their disease also was caught early and we were put on medications. As more of us are diagnosed at younger ages, I believe people will become less comfortable writing off Alzheimer’s as an old timer’s disease.

I am frustrated by the lack of a national will to stop this disease. There are 5.1 million people diagnosed with Alzheimer’s in the United States. Supporters can act by lobbying for increased funding for research. If enough resources are applied, Alzheimer’s can be a manageable, treatable condition until we are able to find a cure.

Richard Bozanich formerly worked as a writer and editor for various publications. He was the cochair of the first Early Memory Loss Forum and serves on the Early-Stage Advisory Group for the national Alzheimer's Association.

Photo: John Dlugolecki/Alzheimer's Association

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