Wendy Mitchell Obituary

(31st January 1956 – 22nd February 2024)

Written by Philly Hare

Photo credit: Philly Hare

Dr Wendy Mitchell BEM – campaigner, educator and best-selling author – has died aged 68, after living with dementia for almost a decade.

Born in Wakefield in 1956, Wendy loved school and excelled at many sports, including tennis and running. A quiet and very private person by her own description, she brought up her two daughters single-handedly in Milton Keynes, earning her living first as a cleaner and then as a non-clinical NHS team leader. She continued in this role for several months after her diagnosis with young-onset Alzheimer’s disease and vascular dementia in July 2014, aged 58.

Initially thrown into depression by her diagnosis, Wendy’s life took a new turn a few months later when she met Agnes Houston MBE at a JRF-funded ‘Women and Dementia’ event in York. Agnes had already been living with dementia for several years and was an active campaigner. “She showed me that there is life after a diagnosis and changed my thinking about having dementia” said Wendy, who soon became equally passionate about promoting this more positive message.

Having never previously used social media, she began to write a blog ‘Which Me Am I Today?’, which now has thousands of subscribers worldwide.  As she explains in the forward to her blog: “It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living as well as you can with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.” While Wendy lost the ability to write or use the phone, she continued to type away almost until her death. The details of her daily life and contacts would quickly vanish from her memory, but recording everything she did, thought and felt in her blog, and posting on social media, enabled her to share her ups and downs with the wider world. Wendy was also an active member of Dementia Diaries. Her X (Twitter) account now has over 20,000 followers.

Wendy has co-written three books (published in 2018, 2019 and 2023) with Anna Wharton, all of which have become best-sellers and have been translated into many languages. In her books she explores with great honesty the many challenges that dementia brought her, and how she constantly tried to ‘outmanoeuvre’ it. But she also explains how dementia helped her to live a new life, becoming much more outgoing and fearless. One manifestation of this was the series of dare-devil activities she undertook to raise awareness and money – these included firewalking, wingwalking, paragliding and a zip-wire walk.

Wendy lived alone by choice, though with loving and sensitive support from her two daughters and son-in-law. Together they ensured that her last house, in an East Yorkshire village, was easy to live in and navigate, sticking photos of contents on cupboard doors, using Amazon Alexa to turn lights on and off, paring down cutlery and crockery to two of each type, taping round light switches to make them easy to find, and reducing her entire wardrobe to several sets of exactly the same clothes.  

Wendy soon got involved with her local DEEP peer support group in York, finding much pleasure and solidarity from her friendships with other people living with dementia, her ‘playmates’. Through DEEP, the UK Network of Dementia Voices, she participated in many ground-breaking local and national projects. Wendy also took part in numerous research studies – not just as a research subject or participant, but often as an adviser, co-researcher or even researcher in her own right. Both Bradford and Hull Universities awarded her an honorary doctorate.

Wendy also advised Julianne Moore on her award-winning role in ‘Still Alice’ (2014) and featured on Woman’s Hour and many other media programmes. In June 2023 she received a British Empire Medal for services to People Living with Dementia in the King’s Birthday Honours.

As she got increasingly involved in public speaking, research, campaigning and writing, Wendy would travel all over the country (and sometimes overseas as well.) She wryly claimed that she cast a hex over any public transport she used, frequently having to cope with delays, cancellations and changes of plan which played havoc with her dementia. Wendy’s favourite place in which to recharge her batteries was Keswick in the Lake District – she called it ‘Paradise’. In the last few years she would spend a few days there every month, always at the same guest house and relishing the same walks and views.

The Covid pandemic put paid to much of Wendy’s travelling and could well have sent her on a downward spiral. But she started walking many miles a day round her village area, taking thousands of photos of the wildlife and sunrises with her Nikon camera. She would post these not only on social media and her blog, but also in the village newsletter, soon becoming known locally as ‘the lady who takes photos’ rather than ‘the lady with dementia’.

In her final book, ‘One Last Thing’, she explored the issue of assisted dying, interviewing many proponents and adversaries of this controversial issue, and explaining her own carefully-thought-out views (in its favour) with great honesty.  Following an accident in January 2024, she decided the time had come to stop eating and drinking. As she explains in her final posthumously-published blog: I wasn’t depressed, I wasn’t forced or cajoled in any way whatsoever, it was solely down to my choice. I was ready… dementia didn’t play the winning card – I did.”

As a person, Wendy was positive, inspiring, kind, funny, brave, honest and endlessly generous with her time, energy and wisdom. She supported many other people with dementia to have their voices heard. Numerous professionals and family carers have testified as to the impact her words have had on their own understanding of dementia. She will be hugely missed by many.

Wendy is survived by her daughters, Sarah and Gemma, and her son-in-law Stuart.