Published on: August 29, 2017
by The Advocate:
For the most part, when someone is diagnosed with Alzheimer’s disease. friends and family members become afraid of saying or doing the wrong thing around them so they avoid contact altogether. Socialization dwindles, and the individual becomes isolated and alone.
Additionally, Alzheimer’s can cause depression or make the person fearful or embarrassed to meet with others because of their deterioration due to the illness.
The late Dr. Richard Taylor, a Houston clinical psychologist who was diagnosed with dementia of the Alzheimer’s type at age 58, knew all too well what follows after a diagnosis of the brain debilitating disease. In his efforts to cope and fight depression after his diagnosis, he began a journal about his experience, writing about his fears as a way to “gain control over what was happening between my ears,” he said. He wrote 82 essays published in his book, “Alzheimer’s From the Inside Out,” many of which spoke of his feelings of isolation and loneliness during the progression of the disease.
Taylor found after his diagnosis that friends and colleagues stopped calling or visiting him, and he was left feeling alone and missing the socialization of friends. One day he himself finally called a colleague and asked him why he hadn’t heard from him. The colleague hesitantly told him that he just didn’t know what to say. Taylor told his colleague, “How about starting with just a ‘Hello?’ ”
Through his illness, Taylor, a founding member of Dementia Alliance International, continued to write his essays and also spoke internationally, focusing on the continued humanity of the person with Alzheimer’s disease or dementia and how such individuals should not be discounted as “half empty.”
For many, a diagnosis of dementia or Alzheimer’s disease becomes all about the disease, and individuals forget to keep living the other parts of their lives. Kate Swaffer, Taylor’s colleague and a consultant with Alzheimer’s Australia, was diagnosed with frontotemporal younger onset at age 49 in 2008. She was told by others to get her affairs in order, quit working and think about her plans for care in the future. From all the recommendations, she subsequently coined the term, “Prescribed Disengagement.”
Though the guidance she got was well-meaning, Swaffer felt it was generally based on preconceived notions of how individuals can or cannot live with dementia, and sets that individual up to live a life without hope, future or well-being, or a life of isolation. These types of recommendations, she said, negatively impact the affected person’s ability to be positive, resilient and proactive.
The best answer as to why individuals with Alzheimer’s disease or dementia become isolated lies not only with the individual and his or her personal feelings, but more with perception, the attitudes of society and others and the stigma that follows the disease. Moreover, supporting change in these attitudes through better education and training of health care professionals and raising community awareness of the disease can help to eliminate misguided and preconceived misconceptions in addition to creating a more impartial and dementia-friendly experience for the affected individual, and an environment and lifestyle that does not promote isolation.
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