Hazel McHaffie

Early Onset Alzheimer’s Disease

Heads above the parapet

Two things to report this week: both related to author appearances.

The first was a salutary lesson to me. I discovered quite by chance, and after the event, that a reporter had slipped incognito into one of the sessions I was doing and published a lengthy report of it! Phew. Over my Dead BodyHad I known, I’d have been super-conscious of what I was saying, but I had no idea. I thought I was talking unscripted to a lovely group of book lovers in a public library on a beautiful sunny Wednesday evening about my latest novel and the issues it raises. They all seemed fully engaged with what I was talking about, and asked some very relevant questions. I simply responded to these and their non-verbal cues.

So it was a bit of a shock to find a pretty full account of what we’d talked about in The Edinburgh Reporter! A few comments have been given an emphasis or slant that I certainly didn’t intend, and hope I didn’t say quite like that, but hey, I’m impressed that the reporter gave our quite low key event so much space.

Then, this past weekend, I was one of four authors invited to take part in a Readers’ Day in North Ayrshire. We were each asked to select two books – one of our own and one other – to discuss in workshops. My choice was Still Alice by Lisa Genova, a brilliant novel about Alice Howland, a Harvard Professor of Neurolinguistics, who gradually loses her sense of self through Early Onset Alzheimer’s Disease when she’s in her late 40s.

My choice of bookWhy did I chose this? Because it’s a brilliant book which takes you inside the skin of this character and her condition. Because I work with people with dementia, so it’s a topic near to my heart. Because I’ve written on the subject myself (Remember Remember). Because I love a book that challenges me to think about important issues. Because I personally identify in many ways with both the author and her principal character, Alice. Enough reasons for my choice, huh?

By chance, dementia has been making headline news again this week too, so I felt it was doubly appropriate … not that the issue is going to go away any day soon, of course.

As we get better and better at curing illnesses, and health and life-expectancy improve, so the number of people contracting this particular set of diseases which affect the brain, memory and behaviour, grows. However, it’s a sobering fact that global spending in this area is five times below the level allocated to the field of cancer. It’s also a fact that many people now fear getting dementia more than they dread a diagnosis of cancer.

You’ll probably remember that last December, the G8 summit advocated a concerted global attempt to combat this growing scourge – in a nutshell, more spending and better coordination in order to find effective treatments. Common sense really. They drew attention to the horrific statistics at the time: approximately 44 million people currently suffering from it; a new case every four seconds; a global cost of 440 billion euros. A predicted increase to 135 million by 2050 (according to The Alzheimer’s Disease International Federation); numbers doubling every two decades (according to The World Health Organisation). The G8 pledged to find a cure by 2025. Bring it on!

Sands of timeAnd this week we’ve heard more of the same here in the UK: the government’s hopes, plans and deadlines for action – increasing investment in research, developing new drugs, giving early access to medication and innovative new treatments, world-wide pooling of resources.

Wouldn’t it be brilliant if people in their forties today – the prime minister, my children, their generation – loved members of families, with bright todays, and promising futures … people like Alice – could be spared the horrors of losing touch with themselves and their memories? Maybe books like Still Alice ought to be compulsory reading for anyone in a position to do something to further this aim; to remind them of the human impact of dementia. Hey, maybe we need readers’ workshops at an altogether higher level!

 

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