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Care Managers Show


29 Feb 2024

Care Managers Book Club: What I Wish People Knew About Dementia

Care Managers Book Club: What I Wish People Knew About Dementia

In this month’s Care Managers Book Club, Care Managers Show content manager Sophie Davies gets an insight into what it’s like to live with dementia from Wendy Mitchell’s What I Wish People Knew About Dementia.

Wendy Mitchell was diagnosed with young-onset dementia in 2014, at the age of 58. After diagnosis, she felt there was a significant lack of aftercare and practical advice available for both herself and her family. What I Wish People Knew About Dementia, published in 2022, is designed to fill that gap, sharing everything that Wendy had experienced and learned in the years following her diagnosis. The result is essential reading for anyone looking to understand more about dementia.

The book provides a fascinating insight into the mind of a person with dementia – something it’s difficult find elsewhere. At one point, Wendy comments that when doing her own research into dementia, she came across plenty of literature from the perspective of carers, but very little from the viewpoint of people with dementia themselves.

She also makes the case that just as every person is different, every person with dementia is different and should be treated as such. Therefore, in addition to sharing her own insights, she includes others from friends with dementia and highlights the fact that her experience is by no means universal.

Throughout the book, we hear about all sorts of unusual and unexpected ways that dementia has impacted her life, from modifications she has made to her house (such as removing all of the doors because they disorientate her when closed) to problems she encounters in public spaces (patterned flooring becomes difficult to navigate, with shapes appearing to dance around). One particularly interesting early chapter focuses on senses, detailing how dementia has changed her sense of taste, smell, hearing, sight and touch.

In addition to walking us through her day-to-day experience of living with dementia, Wendy also argues that fear of dementia is so prevalent because people know so little about it and mistakenly believe that life is over once you get a diagnosis. She reminds us that dementia has a beginning, a middle and an end – and when most people think about it, what they are usually thinking about is the ‘end’ stage that we most often see portrayed in the media.

Wendy explores how this general lack of awareness around dementia causes distress not just for the person with dementia but also for their relatives and/or partner, who suddenly find themselves in a role they haven’t been prepared for and don’t know how to handle. She adds that friends often don’t understand and drift away, believing the person they once knew is now gone when this isn’t the case.

False ideas of dementia are something that Wendy also notices in medical professionals. We hear about her frustration at being spoken to like a child, or ignored when she attends a walk-in clinic with her daughter, and how she decided to stop going to assessments because she finds them so negative and unhelpful. It’s difficult not to feel exasperated as she tells us the fate of a course called ‘A Good Life With Dementia’, designed to offer emotional and practical support for people newly diagnosed, which she was involved in creating. Despite receiving funding from CCGs and support from the local council, uptake was poor because they weren’t receiving referrals from clinicians.

In the epilogue, Wendy takes part in a charity skydive with approval from her GP. Why did the GP have no issue signing off on this? Wendy explains: "Luckily for me, since she read my first book (Somebody I Used To Know) she has changed her view about dementia."

What I Wish People Knew About Dementia is a remarkable read, shedding much-needed light on what it’s really like to live with dementia. It offers insightful, practical advice not just for those who have received a diagnosis, but for anyone who knows a person with dementia and wants to offer them the best possible support.

Wendy Mitchell sadly passed away this month. Read her obituary in The Guardian here.


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