Overview

What I Wish People Knew about Dementia describes what it is like to live with dementia, from the point of view of someone who has the condition.  This makes the book significant, as most lived-experience dementia books are written by carers/supporters.

Mitchell’s writing is witty, passionate,and full of anecdotes which makes this book a page-turner.  Mitchell’s recommendations and insights are based on her extensive reading of dementia research and membership of groups such as Innovations in dementia (UK)

Mitchell covers six themes: Senses, Relationships, Communication, Environment, Emotions and Attitude.  Within each theme there are short sections e.g. in the Senses theme there are eleven sections including, ‘On eating’, ‘On Smell’, ‘On Dreams’.  The index makes it easy to find sections a reader may be particularly interested in without having to search through the whole book.

Who would find this book helpful?

I think that anyone with a diagnosis, or who thinks they may have dementia, would gain helpful information about what dementia can be like, as well as helpful suggestions for how to live with the condition.  They may also feel less alone because of Mitchell’s detailed sharing of her lived-experience.  Mitchell is also careful to say that dementia is experienced differently for each person, there is no ‘one size fits all’ way to live with dementia.

Whānau and friends will gain more knowledge of how dementia could be affecting their person, and by extension more skills and understanding of how to be supportive.

Health Professionals will find recommendations on more ways of supporting people living with dementia both in the community and in care-homes.  

My reflections

It would have been great to have had this book when Dad was diagnosed; it would have helped me understand better what he may have been going through e.g. now I have more understanding of why Dad’s face became less expressive over time, the lack of a smile or acknowledgement could be disconcerting at times.

As someone who works for a community dementia support organisation it was interesting to read Mitchell’s rejection of the phrase ‘Living Well with dementia’, and what a burden it can be for some people due to the high expectation it creates.  ‘Living Well’ is a phrase that we use a lot to describe dementia education and peer support groups.  Mitchell suggests that a better concept is ‘living as well as your circumstances allow’ - her bottom line being to let everyone live with dementia in the way they choose, or need to.

There are descriptions of living with dementia that I found very moving, one where Mitchell describes herself as  ‘looking over the shoulder of another person while they type’ and one where she writes that  ‘what is missing is real emotion’.  And yet despite describing the difficulties and the social challenges – ‘I have always talked of the importance of not giving up on ourselves – so many others will do that for us….’, Mitchell describes herself and her friends as dementia activists.  She gives lots of examples of ways to ‘outwit dementia’ from using brightly coloured plates to make food more visible to the need for more education of health professionals and the  importance to her of the strong peer support she has.

I will be referring to this book and recommending it often,  as there is still a lot I can learn from it.  I feel fortunate that Wendy Mitchell has chosen to share her life ‘with dementia in tow’ so fully to benefit others and increase understanding. What I Wish People knew about Dementia is a hopeful book, and a call to action to reduce the stigma and fear that can surround a dementia diagnosis.

Kristen Phillips grew up in Te Awa Kairangi / Lower Hutt. She went travelling ‘for a year’ and returned to Aotearoa after thirty years based in London.  Her father, Don, was diagnosed with dementia in 2011 and died in 2019.  She currently lives in Te Whanganui-a-Tara with her partner, the writer Mia Farlane.  As well as working part-time for Dementia Wellington and Dementia New Zealand, Kristen likes reading, walking and dancing Argentine Tango. 

Reading about other people’s experiences helped me emotionally and practically around my dad’s condition.   My hope is that these reviews will raise awareness of the ever-increasing number of books (fiction and nonfiction) available to support and educate those of us affected by dementia.

If there are any books you would like reviewed, please leave a comment below.