Shedding new light on dementia

WHEN Wendy Mitchell wrote a best-selling book about life with dementia, Somebody I Used to Know, it had all the fascination of a dispatch from an unchronicled foreign land.

Four years later, in partnership with the same collaborator, Anna Wharton, she has followed it up with What I Wish People Knew About Dementia, a compelling blend of how-to manual and manifesto for a more sympathetic and informed approach to the disease. Even those whose own lives have yet to be touched by Alzheimer's and other forms of the condition - a dwindling number given the 55 million believed to have dementia worldwide - will surely respond to this uplifting depiction of the survival of the human spirit in the most testing of circumstances.

The notion of "living with" - rather than "suffering from" - a disease has become part of the discourse in recent years as patients have insisted on not being defined by their condition. But it must still have taken a special courage for Mitchell, a retired National Health Service (NHS) administrator diagnosed in 2014, aged 58, to step forward and write with such eloquence and insight about a disease which for years was presumed to rob sufferers of sentience.

The price of her high profile, and that of others she labels "dementia activists" who do not present the stereotypical image of sufferers helpless in the face of unstoppable senescence, is to have their diagnoses doubted on social media, she reveals.

"They don't see me curled up in bed the next day, my head unable to even gauge which day of the week it is, simply because I have exhausted myself", she writes, describing the depletion she suffers after a speaking engagement. Yet the dire need for testimony from one who intimately knows the condition and its ravages emerges with shocking clarity from these pages.

For years attention has been on the drive to find a wonder drug to prevent or cure the disease. But reading this book is to conclude that far more mundane forms of support would make a huge contribution to the ability of those with the condition to continue to live a productive life.

A NEWSLETTER FOR YOU

Friday, 2 pm

Lifestyle

Our picks of the latest dining, travel and leisure options to treat yourself.

Sign Up

Even medical experts, Mitchell suggests, all too often view a dementia diagnosis as an end point rather than the beginning of a different way of living. She recalls that after her own diagnosis, she was dismissed; any form of follow-up care apparently viewed as pointless. "If I had been diagnosed with cancer, or a stroke, or diabetes, would the consultant have discharged me?" she asks.

Many of the insights here are practical. Mitchell offers a chance to view the most quotidian of activities - shopping, cooking - through the eyes of someone coping with the sensory changes the disease produces.

A much-anticipated trip to a new branch of department store John Lewis, for example, is almost ruined because the marble floor appears to her as "a polished black ocean of grey swirls that looked like waves". Fighting down nausea, the only way she can traverse it is by keeping her eyes fixed on the ceiling. "It seems such a simple thing that architects and interior-design specialists could be aware of to make the experience so much more inclusive," she says.

Changing perspectives

The book incorporates academic and clinical research but its strength is that the vast majority of the material comes from her own experiences and those of friends: a rare chance to understand the perspective of a group routinely assumed to lack a capacity for rational judgment.

In one passage she tackles the notion that those with dementia are prone to "wander", pointing out that before their diagnoses these "wanderers" might simply have been described as "walkers". She crisply notes: "People with dementia have a purpose even though it may not be obvious to others."

But for all its positivity and its sense that dementia is a disease that can be managed and even, to use a favourite word, "outwitted", Mitchell is careful to acknowledge that for many, such an approach will seem unattainable. After delivering a speech she is approached by a man who finds the notion of "living well with dementia" utterly dissonant with how "rubbish" he actually feels. After reflecting, she comes up with a more nuanced ambition: "living as well as your circumstances allow".

The book closes with an emblem of her determination to defy her disease: a skydive undertaken for charity. Yet a far more mundane act of heroism sticks in my mind: an occasion when, having long been forced to give up the home cooking she had always enjoyed, she manages, through a combination of intuition and ingenuity, to boil an egg.

Coping with dementia is an everyday struggle, about the small victories rather than the big gestures. For those with the condition and everyone who loves them, this is a volume to rely on for both practical advice, and reassurance about how much living those with the condition still have left to do. FINANCIAL TIMES

What I Wish People Knew About Dementia By Wendy Mitchell Bloomsbury £14.99 (S$26.67), 240 pages

Sarah Neville is FT's global health editor