Early On-set Dementia: The Challenge of Getting People to Understand


    I have a son who has struggled, since early grade school, with juvenile rheumatoid arthritis. He's had to try to make people understand what it's like for a child to live with what people perceive as "an old people's disease." 


    That was the first thing I thought of when I read Richard Bozanich's article in the American Society on Aging Newsletter Dimensions. The article, titled "A View of Early-Stage Alzheimer's Disease: From Diagnosis to Treatment and Activism," is a first-hand view of what it's like to get a dementia diagnosis when you are in your 40s.


    Bozanich describes how his Alzheimer's first made itself apparent, and his struggles to get diagnosed. He says, in the article, "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."

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    It's so easy for people to buy into a concept and then go about their business. It can't be Alzheimer's - you're too young. We all have memory slips. Some doctors can be, as Bozanich says, "glib," in their effort not to alarm the patient, with comments meant to make them "feel better" about their memory slips.


    Bozanich was referred to a psychiatrist, who ruled out schizophrenia and depression. He then went undiagnosed for two years. Fortunately, he then found the right doctor who ordered the right tests. They ruled out other possibilities and diagnosed him with Alzheimer's disease. Bozanich has seen Alzheimer's in his family and suspected that he had the disease. He was relieved, as at least one study has shown most people are, when he finally found out what was wrong.


    When we know what is wrong, we then know where to look for options, when we know how to find what treatments are available, we often get some sense of empowerment. New medications can slow the progress of the Alzheimer's disease. It gives the person with the disease, and his or her family, time to plan for the future.


    Bozanich has become an activist for early on-set Alzheimer's. He wants to see changes in how people perceive the disease. It's not just an "old people's" disease. I believe this man will make a difference. His courage in putting his dementia out there for all to see, like that of Richard Taylor, author of Alzheimer's from the Inside Out, and our own Leah, here on Our Alzheimer's, is astounding. We can hope that people will become more open to education. An informed public will be a force for enhanced research and a change in how people with dementia are perceived. 


    To learn more about Carol, please go to www.mindingourelders.com or www.mindingoureldersblogs.com.

Published On: May 28, 2008