What Does It Feel Like to Have Dementia?

Retired Australian surgeon and public speaker John Roth, diagnosed with Alzheimer’s, wants others to know, “I am the same person with a thirst for knowledge, a strong social conscience, a love of debate and I just happen to have a condition called Alzheimer’s Disease.”

He maintains that “memory does not define a person.  It is imply one of the tools mankind has to survive.  But with the diagnosis of dementia, it is almost assumed that all other skill sets have disappeared.  They have not.”

For those trying to understand what dementia feels like, they must recognize that individuals with dementia are “not deaf or stupid.”  Rather, they have a hard time processing and retaining information: “the components of the message do not always line up sequentially, or, from malfunction within the brain, message components simply drop out of sequence.”

Many of us walk into a room and forget why we went there. We retrace our steps, remember what we were looking for, and laugh at our absentmindedness.  Dr. Roth says that when he does the same thing, he is frustrated “knowing what the end point of any activity should be, but the forgetting of a step, or a piece of information, makes arriving at the end point impossible.”

Dr. Roth realizes that he now doubts himself and that others will then doubt his abilities as well.  He observes: “That, for any thinking adult, is the greatest pain of dementia—the loss of dignity, the loss of self-respect, the loss of the community worth of the “WHO I AM.’”

Programs recognizing a person’s dignity, self-respect, community worth, and intellectual capability are invaluable to individuals with dementia.  

Amy Sarcevic, “What Does Dementia Feel Like?”  www.informa.com

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