A tribute to a fearless advocate and friend, Wendy Mitchell

“I met Wendy for the first time seven years ago. I’d been in post as Chief Executive for three years and we crossed paths at a conference. That would be the first of many meetings, and the beginning of a close friendship.

“We initially began to work together through the Young Dementia Network – and bonded over our shared belief that systemic change was needed to improve the lives of people experiencing young onset dementia, or indeed any form of dementia.

“Wendy was a powerhouse. Yes, she was outspoken, but I say that in an endearing way. She wasn’t afraid to challenge people, no matter what positions of authority they held. I really respected that about her. I vividly remember years ago when a healthcare commissioner told Wendy that there were likely only a few cases of young onset dementia in his county. Wendy, knowing too well this was statistically untrue, gave him a piece of her mind! She was able to influence people by her sheer force of personality.

“When I started working with Wendy, many of the materials written about young onset dementia came from the field of academia. Often, these weren’t accessible to the wider public, or didn’t reflect what was happening in practice. It’s a skill to be able to translate complex experiences into accessible information and Wendy was a master of it. She used this skill in the books she authored, which have resonated with so many.

“Wendy was also a member of Dementia UK’s Lived Experience Advisory Panel (LEAP) – a group of people with dementia and carers who ensure the voices of families living with dementia are heard in everything we do. Her input into ensuring our materials are understandable and tangible to real lives of people affected by dementia has been invaluable.

“Wendy was an incredible fundraiser for our charity. The manner in which she raised funds often raised my eyebrows, such as open water swimming in the Lake District; she really was an adventurous spirit. But if I ever asked her about it, she’d just say, “What’s the worst that could happen?”

“Wendy always fought for the value of getting a diagnosis, and for accepting how life changes once you get that diagnosis. Changes, but doesn’t end. She approached her own diagnosis from a standpoint of, ‘This will not get the better of me.’ I can confidently say that it never did. She was a tireless voice of hope for people living with dementia, right to the end.

“I will dearly miss her passion. And I will dearly miss our friendship.” – Hilda Hayo, Chief Admiral Nurse and CEO at Dementia UK

Further tributes from members of Dementia UK staff who worked closely with Wendy

“We will be forever grateful that Wendy supported and influenced the work of Dementia UK with her expertise and gentle challenge through the Lived Experience Advisory Panel. Although we will miss her very much, her memory will live on as a guiding light in all that we do.” – Suzy Webster, Lived Experience Co-ordinator

“I will always be grateful to Wendy for her input in our yearly Admiral Nurse forum where she shared her story in person, and online in more recent years. Her honesty and openness have had a huge impact on us all and on our nursing practice. We won’t forget her.” – Gayle Madden, Head of Admiral Nurse Academy

“Wendy Mitchell was a powerful dementia activist who also happened to be living with dementia herself, such was her impact on the world of dementia care practice. The impact of her message to others living with dementia was and will still be felt widely for decades to come. In her personal drive for independence and autonomy in the face of a diagnosis with dementia has enabled us all to see what is possible.” – Dr Karen Harrison Dening, Head of Research and Publications

“Wendy spoke candidly about how her dementia affected her, and her efforts will leave a lasting impact in the way we understand dementia and approach dementia care. Her contributions to our Lived Experience Advisory Panel helped to ensure the specialist dementia care we offer reflects the needs of people facing dementia.” – Paul Edwards, Director of Clinical Services

“When adapting to dementia, Wendy chose hope and held this hope as she met each challenge. She chose to share her hope with many others including the Young Dementia Network. Wendy contributed hugely to many aspects of our work – she was generous, warm and wise, ready to laugh and equally ready to be forthright about how astonishingly disabling society is for those with dementia. Wendy’s courage, talents and utter determination to love, live and be true to herself are remarkable. Let’s use this, and her rich legacy of literature, to deepen the Network’s efforts to create the much needed changes and bring hope for the future.” – Tessa Gutteridge, Programme Director for Young Onset Dementia

“It was such a privilege to have known Wendy. Wendy was so generous with both her time and with how she shared her experiences. When speaking to our Admiral Nurses, she captured everyone’s attention – we absorbed every word she said, and her smile lit up a room. She will be missed, but her legacy to support a better experience for others living with dementia will live on and we are hugely grateful for her support.” – Caroline Scates, Deputy Director for Admiral Nurse Development

*Photography credit: Philly Hare