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What I Wish People Knew About Dementia: From someone who knows by Wendy Mitchell with Anna Wharton

by
17 June 2022

Margaret Duggan reads advice about dementia

THERE are as many forms of dementia as there are personalities for the disease, which is both affected by and affects the person it so cruelly afflicts. Wendy Mitchell was only 58 when she was diagnosed with early-onset dementia, and seven years later is still living alone, still lectures on living with the disease, has been awarded two honorary doctorates from Bradford and Hull, and has just published her second book, though co-written with help from Anna Wharton.

In this, she is remarkable, in that she is quite unlike most people’s experience of the gradual, sometimes fierce, decline of memory and personality which they see in old age. But she is aware that this is yet to come and, meanwhile, tries in this book to explain how the perception of the world, relationships, the environment, food, emotions, and attitudes can change: how human touch, perhaps a hand massage, can be so important; how a shiny marble floor or a twirly carpet or a glass door can be so disorientating; how someone with dementia (she hates the word “sufferer”) can eat the same meal several days running as they have forgotten that they had it before. She found, in her own home, that closed doors confused her. She solved the problem by removing them.

The book, having two authors, can itself be confusing; for it is not always clear what is Mrs Mitchell’s own experience and what is research by her co-writer. But what she is fierce about is the attitude of many professionals towards those with memory-losing diseases. Her own diagnosis was given her bluntly by a neurologist with no follow-up, leaving her feeling terrified and that she had lost control of her life. But she hadn’t. She found that what was most important was to be able to share experiences, to meet friends who also had experiences of living with dementia, and who understood the changes that it could make to life and how to cope with them.

But there are many hints here for people who will live with and care for those whose minds are changing. A white plate with white food, potatoes, fish, can look empty, and flat plates difficult to manage. Once-favourite foods can lose their taste. Swallowing can become a hazard. Not only do memories disappear, but fantasies can take over. Aggression can become a serious problem. But there are cases where family memories remain when family members keep closely in touch. And physical disabilities can overtake the mental ones. Everybody is different, but everybody remains a person with an individual personality to be cherished.

Margaret Duggan is a former Church Times columnist.

What I Wish People Knew About Dementia: From someone who knows
Wendy Mitchell with Anna Wharton
Bloomsbury £14.99
(978-1-526-63448-1)
Church Times Bookshop £13.49

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