By Oran Aviv, Creator of Hands-on Dementia & Certified Validation Teacher
Last month, we lost a remarkable woman who was an important advocate for dementia awareness, Wendy Mitchell. Diagnosed with early-onset Alzheimer's at the age of 58, Wendy refused to let dementia get the upper hand. Instead, she found ways to challenge her dementia and in doing so, reshaped our understanding of what it is like to live with dementia.
Wendy Mitchell graciously invited us into her world, providing a window into what it's like to live with dementia, and shared her strategies for overcoming challenges or, as Wendy preferred to say, how she "outwitted dementia." I've frequently featured Wendy's insights and tips in my blog posts.
I'm still coming to terms with the fact that this inspiring woman is no longer with us, but today, I'd like to share with you just how special Wendy was and how her contributions have changed the way we understand dementia.
Wendy Mitchell Before Her Diagnosis
Before her diagnosis, Wendy Mitchell knew how to face challenges. She was a dedicated single mother, who raised her two daughters from a very young age entirely on her own. Wendy worked tirelessly to support her family, starting as a cleaner and later advancing within the National Health Service (NHS) in the UK. Over 20 years, she advanced in administrative positions, ultimately becoming a non-clinical team leader.
When Wendy began experiencing uncharacteristic forgetfulness and spatial awareness issues such as not knowing where she was while at work, she realized that something was wrong. Her dementia diagnosis would not only transform her life but also set her on a path to becoming an unlikely hero in the fight against dementia stigma.
The Medical Community’s Failure
Following her diagnosis, Wendy Mitchell encountered a reality that sadly many people diagnosed with dementia face: a shameful lack of support and understanding from the institutions expected to help.
The medical community, while skilled in giving a diagnosis, offered little more. There was no guidance on living with dementia, managing symptoms, or dealing with the challenges ahead. This silence from healthcare professionals left Wendy and countless others feeling hopeless with nowhere to turn to for help.
The response from her workplace increased her sense of isolation. Wendy, who had dedicated two decades of her life to the National Health Service (NHS), found ironically, that her own workplace was ill-equipped to accommodate her condition, Sadly, this lack of support for individuals diagnosed with dementia is worldwide.
When Wendy Mitchell faced this lack of support and indifference, she first sank into depression but eventually managed to search for other options. She turned to research, connected with others living with dementia through online platforms, and began sharing her own experiences publicly. By doing so, Wendy created a new reality for herself and others. This was not just about managing dementia but about challenging and changing the narratives around it.
Wendy Mitchell - Changing Perceptions
Upon meeting Wendy and discovering her dementia diagnosis, people often expressed surprise, noting she didn’t fit their expectations of someone with dementia. Sadly, due to dementia stigma, which typically focuses only on the final stages of this condition, we rarely hear about those who are living fulfilling lives with a dementia diagnosis. Wendy always explained that dementia has a beginning, a middle, and an end with a lot of life still to live in between.
Wendy Mitchell didn’t just live; she thrived, authoring three books, maintaining a daily blog, and becoming a renowned speaker over the decade following her diagnosis.
In a heartfelt letter to British journalist Alastair Stewart after his own dementia diagnosis, Wendy shared:
“It doesn't seem possible, does it? I wouldn't have believed anyone if they'd told me that nine years ago either. I wouldn't have believed that I would write three best-selling books on the topic, be given two honorary doctorates and receive a British Empire Medal from the King, nor that I would have jumped out of a plane to raise money for charity.”
I saved Wendy’s important letter to Alastair Stewart and I share it not only with newly diagnosed individuals but with everyone. It’s a letter of hope and it challenges our perception of dementia.
Until the medical community acknowledges that there is a life to live after a dementia diagnosis, Wendy’s letter is a mandatory read for anyone diagnosed with dementia, along with their family and friends.
You can read Wendy Mitchell’s entire letter to Alastair Stewart here. Please save and share it with anyone you know who is diagnosed with dementia as well as with their families and friends.
Dementia: Beyond Memory Loss
In her first two bestselling books, "Somebody I Used to Know: A Memoir" and "What I Wish People Knew About Dementia: From Someone Who Knows," Wendy Mitchell not only deepens our understanding of what it's like to live with dementia but also highlights the many challenges those with the condition face beyond memory loss or confusion.
In both of these books, Wendy shares the sensory challenges encountered by herself and others living with dementia. She explains how anything black in color can appear as a hole and how people wearing black clothing become frightening floating faces.
Hearing difficulties are another aspect Wendy brings to light. She emphasizes the importance of speaking slowly to individuals with dementia, allowing them more time to process information. Face-to-face conversations are preferred over phone calls, as visual cues play an important role in understanding the emotions of the speaker. Further insights into these experiences can be found in our blog post, "Understanding Dementia"
Wendy also discovered her sensitivity to certain sounds—a common issue not always recognized by those living with dementia. Adjustments to her hearing aids enabled her to hear city sounds again without feeling stressed or panicked. She also mentions the difficulty distinguishing between 'T' and 'S' sounds, which improved when her hearing aid settings were adjusted. More on Wendy's hearing journey is detailed in "Support for Hearing Loss"
One of the more touching revelations is Wendy's request for understanding towards those with dementia who experience hallucinations. She shares how she would sometimes see her deceased parents as if they were physically present. Wendy considers this ability, despite the many difficulties dementia brings, as a precious gift—the chance to see her loved ones again.
Outwitting Dementia
One of the most inspiring aspects of Wendy's journey was her determination to live as fully as possible, despite the challenges of Dementia. She ingeniously adapted her daily life, using technology to compensate for memory lapses and reorganizing her living space to reduce confusion.
Amazingly, Wendy lived alone and felt that by depending only on herself, she remained independent. She often noted that when a family member began to take over, the person with dementia regressed.
Wendy’s strategies for "outwitting" dementia included posting photos of the contents on the outside of cabinets and closets so she would know what is inside them, the use of alarms and reminders on her digital devices, and using a travel app to navigate her way alone on public transportation.
Before her dementia diagnosis, Wendy described herself as a helpless technophobe. However, she learned to rely on technology to maintain her independence. This is yet another stigma that Wendy shattered, challenging the widespread belief that individuals with dementia cannot learn new things.
The Importance of Nature
Wendy emphasized the importance of staying physically active. Weather permitting, Wendy would take daily walks in the beautiful area where she lived, sharing photos and stories of her adventures in her daily blog posts. On a new walk, the photos of landmarks could help her find her way back home if she got lost, and her photos also helped Wendy remember what had transpired during her walks when her memory couldn’t.
Wendy shared her insights on the importance of going out in nature:
“All you got inside is dementia. Whereas outside, you got nature as well. It puts dementia aside just for a little while”
She revealed in her daily blog posts how challenging her days became when she couldn't go out for walks. Extended periods of bad weather often led her into a fog of disorientation or left her feeling depressed.
You can listen to Wendy Mitchell speak about the significance of getting out into nature and discover how she learned to adapt to various situations, showcasing her resilience and innovative approaches to living with dementia.
Wendy’s stunning photographs helped her to be known locally as “the woman who took photos” rather than “the woman who has dementia.” This recognition helped her in the village; when she got lost, people would assist her, simply guiding her in the right direction to get home. This supportive, dementia-friendly atmosphere illustrates how beneficial such an environment can be in helping individuals with dementia maintain their independence.
Wendy also used a tracking app and could call her daughters for directions home if she found herself alone and needing assistance.
Personal Struggle to Public Advocacy
RefusiFromng to accept that life ends with a dementia diagnosis, Wendy started a blog that connected her with thousands around the world, turning her personal struggles into a source of motivation and strength for others. Her open discussions about living with dementia broke down the stigma and wrong ideas about the condition.
Wendy went beyond blogging. She wrote two bestsellers about living with dementia, and her third book, “One Last Thing – How to Live with the End in Mind” published last year, was about to be released in paperback on February 29th. Sadly, Wendy passed away just a week before its release.
Through public speaking, interviews, and partnering with several organizations, Wendy became a strong voice for those living with dementia, showing that being diagnosed doesn't stop someone from making meaningful contributions to society.
Wendy inspired, educated, and changed how we see dementia. I will miss following her daily walks through her blog posts, filled with beautiful photos of animals, sunrises, and nature.
Although I never met Wendy personally and only interacted with her through comments on our Facebook pages, I feel a profound loss. Wendy was more than a teacher; she helped us understand the challenges faced by those living with dementia and showed us how to support them in maintaining their independence.
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