In a world where dementia is often viewed as an inevitable descent into darkness, a group of rebels are challenging the status quo. These are not your typical patients; they are dementia activists, diagnosed with the condition yet determined to change the narrative. Among them are Maxine Linnell, Julie Hayden, George Rook, and Kate Swaffer, each bringing their unique experiences and perspectives to the forefront. Their stories are not just about living with dementia; they are about defying stereotypes and demanding a different future for those affected by this condition.
Maxine Linnell, a retired psychotherapist, reflects on her diagnosis four years ago. What struck her was the immediate shift in people's attitudes. "They stop seeing you as a person and see only dementia, some professionals included. Like this is the end and everything after will be devastating." This sentiment is echoed by Julie Hayden, a nurse and social worker, who was diagnosed at 54. "At the point of diagnosis, most of us are told: 'Well, it's dementia, nothing we can do about that. Best go away and get your end of life affairs in order.'" These stories highlight the pervasive assumption that a dementia diagnosis signals the end, a belief that is both frightening and inaccurate.
George Rook, an ex-teacher, shares his experience of being diagnosed at 63. "Don't take risks. Don't get tired. Prepare." These pieces of advice, he argues, are absurd and fail to encourage continued social engagement, activity, and learning. "Don't take risks is just an absurd thing to say. You don't take stupid risks, but you take risks just by living." This sentiment underscores the need for a more holistic approach to dementia care, one that encourages continued engagement and activity.
Kate Swaffer, an internationally known dementia campaigner, speaks of the "prescribed disengagement" she faced after her diagnosis. "Instead of disengaging, I choose to engage even more vigorously." This is a sentiment shared by all four activists, who have thrown themselves into dementia activism, establishing new groups or becoming active members of existing ones. They are "experts by experience," actively involved in research projects and advocating for a change in public perception.
The activists argue that the fear and anxiety surrounding dementia are often amplified by the way it is depicted in popular culture. The Alzheimer's Society's ad, "The Long Goodbye," with its strapline, "With dementia, you don't just die once; you die again and again and again," is cited as an example of how the condition is often portrayed as a tragedy. "As activists, we're very aware that there are people much further along the line than we are, who perhaps have lost their voice," says Hayden. "And we're constantly campaigning with and for them."
The activists want to expand the range of images, not replace one with another. They are frank about the challenges they face, from balance issues and wheelchair use to stress and temporary loss of language. Yet, they believe that their activism has served as a "mental gym," helping them develop "new neural pathways." Linnell argues that prescribed disengagement "may hasten what people are expecting to happen." This perspective highlights the potential for adaptation and continued engagement with life.
Despite their efforts, the activists have faced accusations that they "don't look like you've got dementia." This raises a deeper question: How do we empower and enable people to live as well as possible, for as long as possible, with as much autonomy and independence as possible? Swaffer succinctly states, "How do we empower and enable people to live as well as possible, for as long as possible, with as much autonomy and independence as possible?" This should include access to national dementia nurses, dementia training as part of medical education, and a clear, properly funded dementia pathway.
The activists make a telling distinction between what happens after a person is diagnosed with dementia compared to cancer or stroke. They argue that people diagnosed with dementia should be given the same resources and assistance available to those with other disabilities. "Every person with a diagnosis of dementia is supposed to have an annual dementia review with someone who knows about dementia in their GP practice," says Rook. "Most people don't get that and, when it does happen, it's rarely actually seen as useful."
The activists are not just challenging the status quo; they are reframing dementia. They are opening a portal to our understanding of the condition in a new way. James McKillop, a retired civil servant who discovered an ability to write lyrics after his diagnosis, sums it up eloquently with the title of one of his songs, "Diff'reently the Same." These activists are not just living with dementia; they are living beyond it, challenging stereotypes, and demanding a future where dementia is not the end, but a new beginning.
