A diagnosis of Alzheimer’s disease typically comes long after the symptoms have been showing, yet finally knowing what is behind one’s atypical behavior can be devastating to the individual and their family. Despite the fact that this is a progressive degenerative disease, some experts and those living with the Alzheimer’s, are looking for positives and ways to live differently.
Dr. G. Allen Power, MD, is a geriatrician, professor and author who specializes in dementia. According to Dr. Power, the old way of looking at dementia (Alzheimer’s disease is one form of dementia) was to “focus on loss…viewed mostly as progressive, incurable” with a focus on associated burdens. These attitudes lead to stigmas that all too often leads to people being left out from regular life.
He proposes a new definition: “Dementia is a shift in the way a person experiences the world around her/him.” When the diagnosis is viewed through this lens, Dr. Power says it can lead to seeing the person as someone with “changing abilities” instead of having a fatal disease and allows them and their loved ones to accept a “new normal” instead of hoping or trying to change the person back to who he or she was before the illness.
No doubt there are still challenges and to be clear, everything is changing.
Michael Ellenboggen was only 39 when he showed the first signs of dementia. He had been a corporate executive, but was soon not able to keep his job as a result of illness after his diagnosis of Young Onset Alzheimer’s Disease. Today at 57, he is an Alzheimer’s advocate who has spoken at conferences around the world and to Congress in his efforts to raise awareness about this disease.
“For the last decade I have campaigned on behalf of myself and all those suffering from this devastating disease” he wrote in a blog for Homewatch CareGivers. “Why do I have to campaign? I do it because over five million Americans have Alzheimer’s, and other forms of dementia. And what is more shocking is the lack of knowledge out there about this illness.”
Mr. Ellenboggen “wrote” his article with the help of a friend as he admitted his ability to speak or write was diminished. While he is frank about the challenges that come with the disease, he is living a new normal, one which includes travel with his wife, and continues to work on helping others like him who are living with dementia.
Indeed, he is not alone, as others are also writing books and articles and speaking publicly about their “new” lives after a dementia diagnosis. It’s not about sugarcoating the hard parts, but striving to show an alternative to no longer being a part of society as many living with Alzheimer’s experience.
In order to live a full life with Alzheimer’s disease, Dr. Power recommends a focus on the individual’s well-being. This approach has these attributes:
Surely there will be more to address than a change in attitude and approach; yet there is for better communication and understanding between all parties involved after a diagnosis of Alzheimer’s disease. Think of it as living with Alzheimer’s, not against it.
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