Wendy Mitchell was diagnosed with dementia at the age of 58, three years ago. At the time, she was a non-clinical team leader in the NHS, managing rosters for hundreds of nurses and keeping much of the information stored in her head. She lived in York and had brought up two much-loved daughters on her own. She was clearly efficient, organised and independent. Mitchell realised something was wrong when, after a series of falls, she experienced a distinct lack of energy (she had been a keen runner and walker): a ‘fog’ in her head. The diagnosis was slow — her GP initially told this fit and able woman that ‘there comes a time when we all have to admit to ourselves that we’re just slowing down’ — but it was confirmed after a series of visits to a neurologist and various scans and memory tests.
Somebody I Used to Know, written with the help of the journalist Anna Wharton, is Mitchell’s memoir of her life after diagnosis, a record of how she spends her days, and her thoughts, emotions and fears. At first, she felt abandoned by doctors:
I have heard nothing from any doctor since my diagnosis three months ago, nothing but one appointment at the memory clinic…How can I help my daughters understand my diagnosis if I can’t understand it myself? That’s what I feel angry about. That’s why I feel broken and abandoned, discarded by an NHS that I have worked in for 20 years…
Mitchell, however, was determined to adapt to her changing circumstances, finding ways round problems, being positive and not letting dementia win. For example, she lost the ability to follow plots of new films, so she watched those she had seen dozens of times before:
Not that I can remember what happens — it’s always a surprise at the end — but I feel a certain familiarity throughout, a sense of the ending, even if I don’t remember the details.
She switched from reading novels to reading short stories and poetry. Clever.
Anyone who has lived with someone with Alzheimer’s will recognise many of the frustrations and fears that Mitchell writes about: the stigma of a mental disease, the terror of getting lost, doctors’ unhelpful remarks (‘There’s nothing we can do, I’m afraid,’ she was told when given her diagnosis), so-called friends going to ground, the steady decline in memory and the increasing inability to speak to and recognise people.
Wendy Mitchell’s lifeline came through contact with the Alzheimer’s Society network: she began to meet other people with dementia, and became a Dementia Friends Champion. She continues to speak at conferences, writes a blog and has a Twitter account. So despite this horrendous disease she has made something positive of her new life with humour, truth and grace, this book giving a unique insight into what it’s like to live with Alzheimer’s.
One reads almost daily that lifestyle choices — exercise, diet, sleep, work and so on — will prevent the onset of dementia, but they did not in Mitchell’s case. And the bleak fact is there is no cure. There are now 850,000 people with dementia in the UK, with one in six over the age of 80 developing it. But there’s been no new drug to treat it in the past 15 years. And the American pharmaceutical giant Pfizer announced recently that it would stop work on new drugs to fight Alzheimer’s and Parkinson’s because it believed that its research didn’t make sense financially. Depressing.