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Lillian Wilson

What I Wish People Knew About Dementia by Wendy Mitchell

An honest account of a dementia journey, providing valuable insights and fresh perspectives on living with dementia.

What I Wish People Knew About Dementia

The book has gotten 4.28 ⭐️ on GoodReads.

When being diagnosed with an early one-set of dementia in 2014, Wendy Mitchell was overwhelmed by all the false beliefs and clichés, concerning dementia, created by media and popular culture.

After immersing herself in the actual science of the disease, Wendy came to the conclusion that she had much less to be afraid of than she thought. In her book ‘What I Wish People Understood About Dementia,’ published eight years after her diagnosis, Wendy candidly shares her transformed perspective on the disease, backed by research, and her sharp sense of humour and wisdom, all aimed at enlightening readers about things she wishes they knew about dementia.

Author’s background

Wendy Mitchell is a former non-clinical team leader in the NHS. In response to the lack of awareness about dementia, she became a passionate advocate for raising awareness and showing that life can still be fulfilling after a diagnosis.

Wendy Mitchell (r)

For her contributions to research, she was honoured with a Doctor of Health degree by the University of Bradford in 2019. Wendy is a mother of two and resides in Yorkshire.

What is the book about?

In her enlightening book ‘What I Wish People Knew About Dementia,’ Wendy Mitchell shares her firsthand experience of living with dementia and how she took control of her diagnosis to shape her life positively. The book covers various aspects of dementia, including its impact on nutrition, relationships, communication, emotional capacity, and sensory hallucinations, which are often overlooked.

Divided into six sections, the book addresses Senses, Relationships, Communication, Environment, Emotion, and Attitude, providing valuable advice for both those with dementia and their caregivers. Wendy’s uplifting narrative showcases her ability to find joy in small moments and embark on thrilling adventures, like skydiving, despite living with dementia.

Wendy’s personal journey is filled with practical tips and insights, such as using reminders and alternative solutions like no-tie shoelaces and getting the same food when eating out. She also delves into the fascinating world of sensory hallucinations, sharing her coping strategies, like photographing what she thinks she sees to distinguish reality.

Thus, Wendy Mitchell’s book is an inspiring read that offers valuable insights into living with dementia, challenging misconceptions, and embracing life’s joys even in the face of challenges.

Table of contents

  • Introduction
More…
  • Senses
  • On How I Eat
  • On What I Eat
  • On the Choice of Food
  • On Eating in Care Homes
  • On Boiling an Egg
  • On Smell
  • On Olfactory Hallucinations
  • On Hearing
  • On Vision
  • On Dreams
  • On Touch
  • Relationships
  • On Caring
  • On How Caring Changes Relationships
  • On Caring as a Daughter
  • On Living Alone
  • On the Need for Connections
  • On People with Dementia as Carers
  • Communication
  • On Facing Criticism
  • On the Fact That Words Matter
  • On Language Used By Professionals
  • On Being Disabled By Others
  • On Depictions of Dementia
  • On Communicating Without Language
  • On Social Media
  • On Technology
  • Environment
  • On the Seasons
  • On Walking
  • On Making Places Dementia-Friendly
  • On the Neighbourhood
  • On Feeling Lost
  • On Living at Home
  • On My Memory Room
  • On Homes and Care Homes
  • On Dementia Villages
  • Emotions
  • On Our Ability to Feel Emotions
  • On Sadness
  • On Fear
  • On Anxiety
  • On Anger
  • On Guilt
  • On Happiness
  • Attitude
  • On the Bad Days
  • On Diagnosis
  • On Coping
  • On the Attitudes of Professionals
  • On the Attitudes of Family
  • On a Sense of Self
  • On Positivity
  • On Peer Support
  • Epilogue
  • Bibliography
  • Acknowledgements
  • A Note on the Author

Key takeaways from ‘What I Wish People Knew About Dementia’

1Dementia changes the way we experience emotions

The fifth section of the book dwells on the topic of emotions and how people with dementia feel sadness, fear, anxiety, anger, guilt and happiness.

Wendy Mitchell points out the problem that there isn’t enough research on the emotions of dementia patients and that the available studies focus on the feelings of caregivers. Besides this, she provides examples of her friends who have dementia to showcase how drastically a person’s emotions can be changed by the disease.

For example, fear is almost not present in their lives. The author herself had a fear of darkness her entire life, however, after the diagnosis she didn’t feel the need to turn on the lights to guide her.

When it comes to sadness, Wendy’s friends expressed various viewpoints. Some could experience sadness to be more lasting than happiness, while others expressed being unhappy for a really short time and quickly switching to other emotions.

2Dementia modifies our dreams

With the progression of dementia, dreams serve as a portal to happier times. The author reports that her dreams are vivid and always show episodes of happy past moments. It looks as if dementia is bringing forth fragments of former identities, reuniting people suffering from it with their younger selves, their loved ones, and moments of joy.

On the flip side, the integration of dreams and reality becomes more pronounced, making it difficult for individuals to distinguish between the two. Vivid dreams can trigger confusion and anxiety upon waking, leading to a struggle to discern what truly happened and what remained in the realm of dreams. The fear of revealing dementia-related challenges to others, like living alone or experiencing memory lapses, further complicates the emotional journey.

3Creating dementia-friendly environments is crucial for ensuring an equitable society

The book devotes a whole section to the topic of creating a comfortable and safe environment for people with dementia. Wendy Mitchell cites the WHO study that emphasises the need for cities and communities to prioritise enablement over disablement. Practical measures like public seating, accessible facilities, clear signage, and safe pedestrian crossings are essential in promoting inclusivity. Understanding and accommodating diverse coping styles, along with involving people with dementia in the design process of buildings and public spaces, are crucial steps in creating dementia-friendly communities.

Additionally, the positive impact of simple changes, such as coloured pavement markings, benches, and friendly staff, is emphasised in fostering an environment that supports the well-being of individuals living with dementia. Ultimately, the key lies in recognising the significance of both physical and social support in enhancing the lives of people with dementia.

Strengths and weaknesses, according to readers’ reviews

Strengths

  • Chatty and readable style, making it engaging and enjoyable to read.

  • Filled with numerous anecdotes and stories, adding depth and relatability to the content.

  • Comprehensive coverage of various topics provides a well-rounded understanding of dementia-related challenges.

Weaknesses

  • Some sections may not provide valuable insights for readers who are already familiar with dementia.

  • Some chapters contain too much information from reports and studies, making them less engaging.

  • Overlaps with the content of the author’s previous book, diminishing its uniqueness.

Best quotes from ‘What I Wish People Knew About Dementia’

“Decision-making can be a very complicated process when you have dementia. In my case, it means I often opt for the same thing to eat.” 
“It’s not often that you hear people talking about how vision is affected by dementia. It’s not our eyes that are the problem, but the way the brain interprets the messages it receives from them.”
“Despite all this, it might surprise people to know that I feel I am better living with dementia alone. I don’t have someone rushing me or questioning. The one thing I always need more of is time. My brain can’t work quickly, so the worst thing anyone can say to me is: ‘Hurry up.’ Those two tiny words prompt panic, confusion and a sense of failure. But living alone, my time is my own; I can go at my own speed.”

Final takeaway

Wendy Mitchell’s book, ‘What I Wish People Knew About Dementia,’ is a profound and enlightening journey through the complexities of living with dementia. With her candid perspective and research-backed insights, Wendy challenges misconceptions and reveals the true nature of the disease.

This book is a valuable resource not only for those directly affected by dementia but also for caregivers, family members, and anyone seeking to better understand this condition.

Where to buy

You may purchase ‘What I Wish People Knew About Dementia’ on Amazon at the best price. It is available in paperback and hardcover, so you may choose an option that appeals to you the most.


Healthypedia FAQ

The book strikes a perfect balance between personal experiences and scientific information. Wendy Mitchell candidly shares her own journey living with dementia, offering heartfelt anecdotes and insights into her day-to-day life. Additionally, she supports her perspectives with research and scientific studies, providing readers with a deeper understanding of the disease and its impact on various aspects of life.

Absolutely! Wendy Mitchell's book, 'What I Wish People Knew About Dementia,' is a valuable resource for caregivers and family members seeking to better understand the challenges and experiences of those living with dementia. The book provides practical insights and advice on how to create a supportive and dementia-friendly environment, fostering empathy and understanding for both individuals with dementia and their caregivers.

Yes, professionals in dementia care and related fields can benefit from reading this book. Wendy Mitchell's candid narration provides unique perspectives and valuable insights into the lived experience of dementia, which can help professionals in understanding and empathising with their patients or clients.

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