Nearly ten years ago, I recommended the book How to Age, written by journalist Anne Karpf, as a perfect “introductory” work for those who intend to transform their maturity years into an active and pleasurable phase. The author states that we must rid ourselves of the so-called “deficit model” of aging, as if it only brought losses – especially since the brain is more elastic than previously imagined.
I make this introduction because it was with great pleasure that I read your article about the “dementia rebels,” published in the British newspaper The Guardian. Couple sunbathing: people diagnosed with dementia are fighting against stereotypes and demanding adequate medical support TungArt7 for Pixabay Few things are more feared than such a diagnosis, because from that moment on, patients begin to be treated as if they were no longer capable of managing their own lives and needed continuous supervision. Now, “dementia rebels” are fighting against stereotypes and demanding adequate medical support.
“It is a hybrid of ageism and ableism combined,” the journalist describes. She unfolds numerous stories, such as that of psychotherapist Maxine Linnell, 78, diagnosed four years ago. The biggest shock, in her opinion, was the change in attitude from acquaintances: “They stop seeing you as a person and see only the disease.
It is as if, overnight, I were one step away from the advanced stage of dementia.” Professor George Rook received three similar pieces of advice – all duly ignored – when he was diagnosed in 2014, at age 63.
“First, don't take risks. Second, don't get tired.
Third, prepare yourself. Not taking risks is an absurd thing to say.
You don't take stupid risks, but you take risks just by living. There was no incentive to continue socializing, staying active, learning new things, or volunteering,” Karpf said. People diagnosed with dementia are still routinely advised to disconnect from life as they know it and to prepare to die.
Kate Swaffer, an internationally known Australian activist, calls this approach “prescribed disengagement.” However, instead of slowing down, Linnell, Rook, and Swaffer chose to fight vigorously, combating stereotypes and the lack of support after diagnosis.
In the United Kingdom, there are several “dementia rebels” organizations, such as the Young Dementia Network, the Dementia Alliance International, and the Deep (Dementia Engagement and Empowerment Project). The activists do not need to be reminded of the growing challenges they will face. Their main argument is that the advanced stage is not the only existing story, although it is frequently portrayed as such: they want to expand the range of images, not replace one with another.
Due to the predominant view that patients cannot learn new skills, they are rarely offered any type of rehabilitation, despite its benefits having been documented. Swaffer, who is pursuing a PhD at the University of Adelaide, summarizes: “If you develop aphasia after a stroke, you are referred to speech therapy, something that does not happen when someone with dementia presents speech problems.” Frontotemporal dementia challenges doctors and science.
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