What Are You Doing Here? Reflections On Dementia
(The Caxton Press, 2013)
Janet Wainscott
161 pages

‘Love is not love that alters when it alteration finds’
(Shakespeare, Sonnet 116) - Opening quote after dedication

Overview
What Are You Doing Here? is a memoir – Janet Wainscott’s mother had dementia. The title of the book is what Janet’s mother would often say to her when she arrived for a visit. The twenty-one short chapters are the story of how dementia affected the family, and personal reflections on that experience.  Chapter one challenges myths around dementia – see examples below.  Throughout the book, Wainscott quotes from other people with lived experience whom she interviewed as part of her research.

Who would find this book helpful?
People with dementia and their supporters would find this book helpful, particularly at the pre or early diagnosis stages – for the tips on planning for the future and the shared lived experience.    

There is an important message in the book about not buying into the stigma of dementia; Janet’s mother found it difficult to acknowledge her illness and wanted to carry on as if nothing was wrong. In the last chapter (Aftermath) Wainscott reflects on the ‘courage, determination, and dignity’ it took for her mother to maintain her denial. She then hopes that if she were in a similar position she would acknowledge the diagnosis, let other people know, and plan ahead.  

My reflections

Wainscott’s straightforward, unsentimental, spare style, made it possible for me to learn a lot in a short space of time.  I like that she asks some hard and important questions e.g. ‘How do we respond to someone whose sense of reality is seriously distorted?’ and ‘Why do so many people who walk alongside a loved one with dementia feel so damned guilty?’ (p.9).

I loved chapter one, where dementia myths are refuted.  Here are two of the five:                                                                                                                     

Myth 1: People with dementia are quite happy because they don’t know what’s happening to them

Myth 2: People with dementia are not really people anymore;

Wainscott writes robust responses to all the myths such as:
‘One thing I have learnt is that no matter what damage dementia does to a person, it doesn’t make [them] less of a person or less worthy of respect. Generally, at the very end there remains a self-aware sentient being, still capable of feeling.’ (p5)
It is hard to convey in a short review all the wisdom contained in this compassionate, informative, compact book, the tone of which is summed up by the opening quote from Shakespeare.  

 
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, Kristen likes reading, walking and dancing Argentine Tango. 

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