‘Nothing About Us, Without Us’ Are we really listening to people living with dementia?
Kate Swaffer has stepped away from advocacy.
Since being diagnosed with a rare form of young-onset dementia at just 49 years old, Swaffer has become one of most widely known advocates for the rights of people with dementia and older people, globally. She is a highly published author and poet, an international speaker, an independent researcher, and an award-winning campaigner for dementia to be recognized and managed as a disability. In 2014, Swaffer co-founded Dementia Alliance International, a registered charity providing peer-to-peer support, social support and advocacy for people with dementia.
Ad-vo-cate: a person who supports a cause.
Yet, Swaffer asserts that “Advocacy's not working. I meet people nearly every week, newly diagnosed with dementia, who still get told to get their end-of-life affairs in order”. She terms advice to abandon pre-diagnosis life prescribed disengagement and has written about how this nihilistic perspective sets up a “chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive."
After 15 years of advocacy, Swaffer is disappointed to have not seen significant changes in the public health response to dementia that might enable better post-diagnosis supports in her home country of Australia or for others living with dementia across the globe.
Another reason Swaffer no longer calls herself an advocate is that she is increasingly uncomfortable about how people with dementia are being engaged as advocates by organizations and researchers, suggesting that in her experience, “Nobody wants a truly authentic voice." She observes that “we should have more than one person or even a few people with dementia on an advisory group because one person can't represent the 55 million people currently living with dementia." Along with more representation, she also suggests more diversity among advocates is required to enable meaningful participation by people who have dementia in research and the design of supports. “It's the same people with dementia over and over and over again being interviewed for research projects or being members of advisory groups."
Ac-tiv-ist: a person who campaigns to bring about social change.
While she may no longer call herself an advocate, Swaffer remains an outspoken activist and highly engaged civil rights campaigner. Despite increasing recognition that people with dementia have the right to be supported to live well, Swaffer observes that “the healthcare sector and dementia researchers still refuse to embed dementia as a disability into post diagnostic pathways.” This has a huge negative impact on post-diagnosis mental health. “When you've been told there's no life left, it's pretty easy to sink into apathy, depression, giving up, hopelessness, and learned helplessness” she notes.
Swaffer continues to campaign for all people to have access to ongoing rehabilitation after a diagnosis of dementia. “Rehabilitation for people with dementia should be offered in the same way they'd get if they had a stroke”. She asserts that “intensive rehabilitation should be front and center from the time of diagnosis. It's not, and there’s no funding for it either." Swaffer finds this lack of support especially frustrating in light of new knowledge about the brain that has emerged through research, since her diagnosis. “I’ve realized that with support I can do a lot of things for myself still. I can use neuroplasticity to create new pathways in my brain.” She wants others diagnosed with dementia to be supported to explore how rehabilitation can help them create a meaningful new post-diagnosis life.
Cat-a-lyst: a person who provokes or speeds significant change.
Swaffer also continues to champion change for people living with dementia by influencing social policy development. Through PhD studies at the University of South Australia, she is investigating how issues of discrimination, neglect, stigma, and dementia policy intersect to oppress people living with dementia. She was a co-researcher in a landmark paper calling for reparations for harms experienced in residential aged care that describes the necessity and scope of reparations, along with forms reparations might take. Swaffer has also recently written a book chapter titled “The Elephants in the Room” in which she shares her perspectives on some of the reasons advocacy continues to be ‘about us, without all of us’ and explores the notion that people with dementia are no less oppressed in 2022 than they were in 1982. The book, titled “Ageing of the Oppressed: A Pandemic of Intersecting Injustice” will be released on September 12, 2023.
Even as she navigates life with dementia, Kate Swaffer remains a powerful catalyst for change by actively questioning the status quo and by championing the rights of people living with dementia, and all older adults. While it’s a role she may not have wanted or chosen, her courage, spirit and example have inspired others worldwide to create change to improve the lives of people with dementia and care partners.
GET MORE INFORMATION
The World Health Organization has mandated rehabilitation as a core recommendation in the global action plan on the public health response to dementia.
Learn more in the Global Action Plan on the public health response to dementia 2017 - 2025.