Published on: September 5, 2014
by Susan Scutti for Medical Daily:
Observed annually in September, World Alzheimer’s Month was originally launched two years ago by Alzheimer’s Disease International, accompanied by a seminal report, “Overcoming the Stigma of Dementia.” It is a perfect time, then, to revisit the theme of social stigma, beginning with the thoughts of someone with the disease.
“It’s just a complete loss of self-esteem and self,” Greg O’Brien, an award-winning investigative reporter, told Medical Daily. At the age of 64, he is in what he describes as the “early to mid-stage” of the disease, which hasn’t stopped him from publishing a first-person account of his illness, On Pluto: Inside the Mind of Alzheimer’s. “I’ve lost my balance, I have problems with spatial judgment, and my filter is gone,” he added, “And I’m in tremendous rage, which is part of it.”
O’Brien’s descriptions of the disease and its symptoms often blend the lyrical and the comical. “I say my brain is now like an iPhone, a very sophisticated device, thanks to inherited intelligence, but it pocket dials, it has a short memory, and it shuts down without notice,” he told Medical Daily. “And that’s what this stage of Alzheimer’s is like — it’s the connection that doesn’t make it.” At the same time he’s clear about the fact that “60 percent of my short-term memory is gone in like 30 seconds,” while also revealing what is rarely discussed, certainly not in the media.
“I see hallucinations that are scary and that I don’t know how to explain,” he toldMedical Daily, recounting one particular episode in which he saw an (imaginary) gate pulled down and blocking his family’s car in a late night parking garage. He increasingly finds it difficult to express his thoughts and he wakes every morning feeling like all his files “are spread all over the floor,” yet when asked how he could be lucid — he did not appear demented in the least — he explained, “People just don’t understand. You can rise to the moment. Tomorrow I will crash.”
Clearly, O’Brien like many others daily fight not only the disease but also its stigma, which, according to the Alzheimer’s Disease International report, prevents many from acknowledging their symptoms and taking steps to gain the help they need. A survey found 24 percent of English-speaking Alzheimer’s patients concealed their diagnosis from others, while a full seven out of 10 respondents to the Chinese survey did the same. Unfortunately, there is good reason for hiding the truth.
“In most circumstances I have found that if I have disclosed that I have dementia, my thoughts, opinions, conversations are discounted and dismissed,” stated one such patient residing in the United States (whose name, along with all others mentioned in the report, is withheld for privacy). “This will affect the neighbours’ view of my family,” noted a Chinese patient. “They may mistreat us.”
When asked if they’d been treated differently because of their diagnosis, English-speaking respondents were evenly split: 40 percent answered yes and an equal amount answered no. Awkwardness was first and frequently mentioned. “Friends, family are uncomfortable and say they don’t know how to behave ‘normally’ around me anymore — they didn’t really give our relationship a chance to move forward,” said an American.
Another thread running through respondents’ answers was social exclusion, as more than 59 percent of respondents indicated their own friends were most likely to avoid or treat them differently following diagnosis. A Spanish respondent noted how his neighbors switched to using the dimunitive: He is now Monchito, instead of Moncho. “They are all really good people, but I feel that they treat me like a child,” he said. A patient in the United Kingdom simply wrote, “Some of my friends have moved on.”
Meanwhile, awareness of the disease is lacking, including and perhaps especially in reports on TV and in newspapers. “The media still portrays dementia as one thing: end-stage Alzheimer’s disease,” said a U.S. patient. “There is little awareness of other types of dementia or of stages of Alzheimer’s.” A dementia patient in Australia expressed the same perception: “Stereotype of late stage old person in nursing home is all that is shown when dementia is mentioned — never positive images or only a few and counteracted by the usual negative ones.” Some sufferers see a slight shift in perception. “It’s getting better,” one UK patient noted. “More people with dementia are being asked for their opinion and some interviewers are even willing to wait or listen to the answer.”
“I know all these people are going through it and can’t talk about it, and I said, someone’s got to start talking about it,” O’Brien said. “I’m not stupid, I have a disease. That’s the difference.”
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