Dementia, a condition that has long been shrouded in fear and misunderstanding, is now being challenged by a group of determined individuals: those living with dementia who refuse to be defined by it. Maxine Linnell, Julie Hayden, George Rook, and Kate Swaffer are four such activists, each with their own story of resilience and defiance against the stereotypes surrounding dementia. Their collective voice is powerful, and it's time we listen.
Maxine Linnell, a retired psychotherapist, was diagnosed with dementia four years ago. What surprised her was the immediate shift in people's attitudes. "What was striking was how many people's attitudes changed almost immediately... 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."
Julie Hayden, a nurse and social worker, was diagnosed nine years ago at the age of 54. Her journey began with a long-standing suspicion that something was wrong, only to be constantly told it was depression or menopause. Her doctors still associated dementia with old age, failing to consider young onset. "At the point of diagnosis," she recalls, "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.'"
George Rook, an ex-teacher, was diagnosed in 2014 at the age of 63. He was given advice that he found absurd, such as 'don't take risks' and 'prepare.' He emphasizes the need for encouragement to continue socialising, staying active, learning new things, and volunteering.
Kate Swaffer, an internationally known Australian dementia campaigner, lost her job immediately after her diagnosis. She calls the advice to disengage from life 'prescribed disengagement.' Instead, she and others like her have thrown themselves into dementia activism, establishing new groups or becoming active members of existing ones. They are 'experts by experience,' involved in research projects and even Swaffer's PhD.
The fear surrounding dementia is deeply ingrained, with half of people in the UK now fearing it more than any other health condition. This fear is amplified by popular culture, which often portrays dementia in a negative light, focusing on the later stages and conforming to stereotypes. The 2024 Alzheimer's Society ad, 'The Long Goodbye,' was particularly damaging, with its message that 'With dementia, you don’t just die once; you die again and again and again.'
Despite the challenges, these activists are making a difference. They are reframing dementia, challenging the 'tragedy narrative,' and advocating for a more holistic approach. They want to expand the range of images, not replace one with another. They face challenges, such as balance issues, language loss, and difficulties with numbers and dates, but their activism serves as a 'mental gym,' helping them develop new neural pathways.
The activists' ultimate goal is to empower and enable people to live as well as possible, for as long as possible, with as much autonomy and independence as possible. This includes access to national dementia nurses, dementia training as part of medical education, and a clear, properly funded dementia pathway. They make a crucial distinction between the support received after a dementia diagnosis and that for conditions like cancer or stroke.
The activists also emphasize the importance of person-centred care, drawing on the work of Tom Kitwood, who challenged the dehumanisation of people with dementia. They face a Groundhog Day-like situation, constantly reminding others of the human dignity of those living with dementia. Linnell suggests that 'remembering someone’s name isn’t such a big deal; our memory isn’t who we are.'
In conclusion, these dementia activists are not just challenging the stereotypes but also the very systems that perpetuate fear and misunderstanding. Their voices are a call to action, urging us to listen, learn, and support those living with dementia. It's time to embrace a different narrative, one that celebrates resilience, dignity, and the power of human connection in the face of this challenging condition.
