Two thirds of people living with dementia in the UK are women, as are the majority of carers, both family and professional. It's an issue that affects women disproportionately in various ways - financial, practical, political - as I have previously discussed.
This summer I was interested to take part as an interviewee in Dementia Women, an ongoing project funded by the Joseph Rowntree Foundation and run by Innovations in Dementia and the Social Policy Research Unit at the University of York, which examines women's experiences of dementia in the wider social, cultural, and emotional sense.
I was invited to speak at the launch of the booklet (written by Helen Cadbury with photography by Eloise Ross), which aims to spark discussion and raise awareness of these often hidden stories.
What I had to say was a provocation to debate: I make no apology for stating it as personal opinion - there are more than enough stats out there (see my links above!).
For me the greatest tragedy of dementia is its effect on identity and relationships.
And I would suggest that society more readily grasps the loss of identity experienced by men – living with dementia or in a caring role - because it equates the man’s self with his public role: doctor, engineer, lawyer, sportsman, driver, head teacher, famous author. Something active and respected, the loss of which is visible to the outside world.
Of course there are women in these same public roles today, and maybe by the time they and their children have aged, expectations will be more equal; but older women already living with dementia now (and their female carers) are less likely to be identified by public status than their husbands, brothers, or fathers.
Read any news headline and a woman is still more likely to be described as “wife and mother, 32” or “grandmother of four”, regardless of profession and interests. Unless, of course, she’s a sex worker – which will be deemed worthy of mention, if she’s a victim of violent crime.
Last year, there was an outcry on social media when the New York Times published an obituary with the opener:
“She made a mean beef stroganoff, followed her husband from job to job, and took eight years off from work to raise three children. ‘The world’s best mom’, her son Matthew said. But Yvonne Brill, who died on Wednesday at 88 in Princeton New Jersey, was also [my italics] a brilliant rocket scientist…”
More recently, Amal Alamuddin was feted in the media, not for her achievements as a top international human rights lawyer, but for marrying George Clooney – and, of course, for losing weight.
Last weekend, I went to see the new Mike Leigh film, Mr Turner, in which Timothy Spall gives a bravura performance as the celebrated painter. Like The Invisible Woman, Abi Morgan’s adaptation of Claire Tomalin’s book about the relationship between Charles Dickens and the young actress Nelly Ternan, 'Mr Turner' shows that male genius is often achieved at the expense of female sacrifice. It’s a familiar image: the driven artist or pioneering scientist, feverishly toiling in his studio, laboratory, or office, while his wife or lover brings him a drink, tidies the house, and keeps the children and creditors at bay.
Now intellectually, we know this is an outmoded stereotype; we know women can do these things too and some most certainly do. But on an emotional level, we still largely expect women to be the nurturers, the “supporting cast”. Their identity, in the public consciousness is not autonomous - even if they are high-achievers - but bound up with those they care for.
So when a woman begins to lose her faculties or starts to withdraw from professional life to care for someone else, it may pass without much notice.
Coverage of dementia in news stories and government edicts usually focuses on financial constraints: working hours lost to the economy, the cost to the NHS. These are tangible things that affect the “male” world of politics and finance. But what of the cost to the individual?
Women’s identities, the greater bulk of their lives, are often hidden in the domestic realm, like the body of a whale, showing no more than a dorsal fin above water. So when they begin to lose grip of who they are, who notices? Who cares?
And if we are so much the product of our relationships with others, what happens when shared memory erodes, and those bonds too are gone?
My mum was a singer, a teacher, chatterbox, comedienne; a lover of pretty things - perfume, jewellery, music, animals – and most of all, of me. Who mourns the loss of all that? Only me. And who am I now, after more than a decade of watching dementia take her? Single, childless, back to square one in my career; unknown even to the person who gave birth to me, to whom I have devoted those years.
Dementia is about much more than economics. Yes, we need policy-makers to address the many financial and professional disadvantages it forces on women; but I hope this project – and all our collective efforts – will shine a light on the deeper losses of self that are felt by so many women behind closed doors.