A dementia manifesto

The Australian writer Kate Swaffer appears to be one of a kind. Diagnosed with dementia before she turned fifty, she has done much more than just advocate for dementia funding or promote progressive policies that could help people who have been warehoused to reclaim a share of happiness. She has created, in Australia, at least, a sense that it is possible that the final years of dementia don’t have to be everyone’s nightmare. At the same time, she has been battling an assortment of symptoms, some of which are atypical. For example, since she was diagnosed with dementia, she has been diagnosed with acquired dyslexia. And she has remarked that the reason she blogs is not to build up a readership, or to educate people about this often misunderstood disease. It is to leave behind a digital version of her long-term memories, which she describes as fading. But despite her many difficulties, she continues to speak publicly, in Australia and abroad. Acknowledging that her mind needs help, she has nicknamed her husband her Back-up Brain, or BUB.

In her book, What the Hell Happened to My Brain: Living Beyond Dementia, Swaffer presents a sometimes angry slant on how people regard the disease. This is not the first book-length treatment of dementia that I’ve read by someone with the disease. I learned much from my fellow Massachusetts writer Greg O’Brien, who wrote an insightful and sometimes entertaining book, On Pluto: Inside the Mind of Alzheimer’s. But Swaffer’s book goes one step further. It is a manifesto. Swaffer and I are of the same generation. We came of age in the early eighties, when the AIDS epidemic was in its early and most horrifying phase. A cure was many years into the future. I wasn’t very politically active during those years, but it appears that Swaffer was.

Her activism is most notable when she is zeroing in on the elder care industry. In an inspired move, Swaffer coined the term “Prescribed Disengagement®, and then had the phrase registered. This is why the sentence you are reading includes the trademark symbol—®—near its end. Some readers skimming through the book may assume that Prescribed Disengagement® is a good thing. Doesn’t the ® confer legitimacy? Quite the contrary.

When Swaffer was diagnosed with frontotemporal dementia at age 49, she was told that she should stop working and studying, and live [Swaffer’s italics] for the time that remained. “It seems extraordinary,” Swaffer commented in her book, “that one day I was studying for a tertiary degree, working full-time, volunteering, parenting two teenage boys and running a household, doing the shopping and gardening, living a very busy and full life with my husband, and the next day, told to give up life as I knew it and to live for the time left.”

Thanks to Swaffer’s book, I feel confident saying that the stigma of dementia is a good deal worse in Australia than it is in the United States. Many Australians, it seems, can’t get the stereotypes of dementia out of their heads. And for that reason, it takes more courage for Australians with dementia to come out of the closet. Swaffer reports that some relatives and acquaintances don’t believe she has anything wrong with her at all. As Swaffer puts it, “Others have openly suggested or accused me of lying for notoriety or sympathy.” One person with dementia Swaffer knows makes a point of carrying a letter from a neurologist, and another person keeps a brain-scan image at all times to demonstrate that the person really does have a serious disease.

One of the strongest parts in this book is Swaffer’s critique of Australia’s nursing-home industry. In a chapter titled “The Language of Dementia,” Swaffer points out that only recently has it become permissible for people with dementia in Australia to play a part in the language that, in many cases, controls people’s lives. She bluntly states, “When people with dementia have reduced or impaired language abilities, then it is up to others to learn how to communicate with them, not the other way around. If challenging behaviours become part of the experience, then it is more likely due to not being able to express things like pain, poor-tasting food, or being bored, than it is the fault of the dementia.” Other tweaks in language, such as replacing “suffering from” to the neutral “diagnosed with,” can provide a more neutral (and accurate) description of the disease, Swaffer notes.

One part of Swaffer’s agenda gave me pause: That people in nursing homes “wander”—essentially, escaping from their nursing homes because they are overmedicated and dreadfully bored. I don’t doubt that the previously sentence is correct. But while it’s all good to theorize about the state of mind of people far down the dementia path, it seems improbable that loved ones of the person with dementia would countenance anything that should put the person with dementia in harm. Even in temperate climates, wandering can be deadly.

That said, there is much wisdom in Swaffer’s prescription. Don’t condescend to those who have the disease, no matter how “demented” the person is. Don’t underestimate their capabilities. And, most of all, don’t wantonly talk about the person who is present. He or she may be listening.