The writer-activist Wendy Mitchell, who has died aged 68, won hearts and minds by advocating for living positively with dementia. She was determined to remind people that those living with the disease are not “sufferers” and that there is “a beginning, a middle and an end to the disease – with so much life to be lived in between”. She held strong beliefs that people should have the right to choose their own death, and campaigned for assisted dying laws in Britain – one of the subjects of her final book.
Wendy wrote three bestsellers, Somebody I Used to Know (2018), What I Wish People Knew About Dementia (2022) and One Last Thing: How to Live with the End in Mind (2023) – I was fortunate enough to be her ghostwriter on all of them. They were translated into dozens of languages, and her advocacy work won her honorary doctorates from Bradford and Hull Universities, and a British Empire Medal last year.
When I met Wendy in 2016, she was writing a daily blog, Which Me Am I Today? ,which she had started simply to document her day-to-day life, though it soon had tens of thousands of followers. After her diagnosis of young-onset vascular dementia and Alzheimer’s disease in July 2014, Wendy was shocked at the lack of information and support available to those newly diagnosed.
In Somebody I Used to Know, she wrote about her own depression at the diagnosis, until she realised: “I was still the same person I had been the day before my diagnosis.” She threw herself into academic and medical research, speaking to doctors, nurses and other professionals. What I Wish People Knew About Dementia chronicled how the disease affects different parts of daily life, aside from memory, including taste, smell, hearing, gait and vision.
Her tips, such as draping a scarf over a flat-screen television to avoid it looking like a hole in the wall, or sticking photographs of clothes on wardrobe doors as a reminder of what is inside, made all the difference to those who were newly diagnosed.
Wendy enjoyed finding ways to outwit dementia. As she wrote in her final blog post: “Yes, dementia is a bummer, but oh what a life I’ve had playing games with this adversary of mine to try and stay one step ahead.”
Born in Wakefield, West Yorkshire, to Violet and Ken Draper, Wendy described growing up in their pub in her first memoir. She went to school in Pontefract and was a keen sportswoman, excelling at tennis and running – after her diagnosis, she swapped running for fell-walking in the Lake District. She described the Lakes as her “paradise” and Friars Crag as her favourite place to sit.
Wendy raised her two daughters, Sarah and Gemma, alone after her divorce from their father in the early 1980s (although she continued to use her married name). For many years she earned her living as a cleaner, until she started working in administrative roles within the NHS, gaining promotion to become a non-clinical team leader. Eventually she was forced to retire from her job as a rota manager at Leeds general infirmary, and later campaigned for workplaces to support those newly diagnosed with dementia to continue working: “We don’t lose all our skills overnight just because of our diagnosis,” she said.
In early retirement Wendy discovered other skills, including writing, and enjoyed her “trundles” around the village of Walkington, in the East Riding of Yorkshire, where she lived, capturing local wildlife with her trusted Nikon camera. She revelled in the fact that villagers unaware at first of her diagnosis described her as “the lady with the camera”.
She met many dementia advocates, and was inspired to take up campaigning when she heard Agnes Houston talk at a women and dementia event in York. Wendy became a guiding light to others, a regular contributor at Innovations in Dementia and York Minds and Voices, part of the DEEP UK Network of Dementia Voices.
She gathered her own formidable team of friends living with dementia, who produced video content chatting about the issues they encountered and nicknamed themselves “the Four Amigos”. She advised on the BBC TV series Casualty and the movie Still Alice (2014), and received a mention from the Hollywood actor Julianne Moore in her Bafta acceptance speech.
Wendy raised tens of thousands of pounds for Dementia UK with her annual “wacky challenges”, as she called them, daredevil stunts that included walking across hot coals, skydiving, wingwalking and, last autumn, a swim in Derwentwater after she was forced to abandon her abseil down the Leadenhall building in London (the “Cheesegrater”) due to technical issues (theirs, not hers). She insisted that she was fearless after her diagnosis, having already faced the worst.
Wendy was a force of nature, but dementia made her life harder and harder. She ended her life by voluntarily stopping eating and drinking (VSED), a subject she discussed in One Last Thing. In her last blog post, written in advance, in which she announced her death, she said: “Adapting to this life with dementia is over, but I don’t consider dementia has won, as that would be negative … it’s me calling time on my dementia – checkmate – before it plays its final move.”
She also pleaded for people to campaign for assisted dying laws in her memory.
Reviewing Somebody I Used To Know for the Sunday Times in 2018, Jackie Annesley wrote: “The world could do with more Wendys.” I couldn’t agree more, but there was only one wonderful Wendy, taking people by the hand and showing them how to live a good life with the disease in tow, or indeed how to talk about the end of life so they can instead focus on living.
Wendy is survived by her daughters.
• Wendy Patricia Mitchell, writer and campaigner, born 31 January 1956; died 22 February 2024
