Women's Identity: Who Cares?

Two thirds of people living with dementia in the UK are women, as are the majority of dementia carers, both family and professional.  It's an issue that affects women disproportionately.

In summer 2014 I took part as an interviewee in Dementia: Through the Eyes of Women (a 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 examined 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 aimed to spark debate and raise awareness of these often hidden stories.  

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.

In 2013, there was an outcry on social media when the New York Times published an obituary with the opener:

Mum (right) with her friend,
Jean

“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…”

The following year, 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. 

Around that time, Mike Leigh's film, Mr Turner, opened, 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. 

Mum, backstage at
Manchester Belle Vue

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.


Postscript: since publishing this post, I have written a play, The Things We Never Said, which explores these issues further, through the prism of a mother/daughter relationship. Starring Lia Williams and Siân Phillips, it was first broadcast on BBC Radio 4 on 11 May 2017, won Best Radio Drama at the Writers' Guild Awards 2018, and is available to read at BBCWritersroom Drama Archive.

Social Care: A Women's Issue?

As I was writing my previous post, Socialcare Is Not a Lifestyle Choice, it struck me that this issue impacts disproportionately on women.

Longer life expectancy means that women are on average more likely than men to need care services.  For instance, 1/15 women aged 75 to 79 has dementia, as opposed to 1/19 men; that figure rises to 1/9 women v 1/10 men over 80, and 1/2 v 1/3 over 95: UK Alzheimer's Society 2014 infographic. And UK National Life Tables 2012-2014 calculate that period life expectancy at birth is now 79.1 years for men, 82.8 years for women.

Thus, more women will live beyond 80; more women will develop dementia – and need high-cost, 24-hour care. Two thirds of those currently diagnosed are women. Visit any care home, and you won’t need stats to tell you that most residents are female.

Women are also more likely to be carers, both as family and as (notoriously underpaid) professionals.

Why does this matter?

Well, for a start, let’s look at care funding.  As I have discussed in my previous post, those in England with over £23,250 in assets, including their own home, currently have to pay 100% of care costs.  Let’s take for example an elderly couple owning their own home, which is their main joint asset; one of them dies, the other needs full-time care.

Apart from that house (which would disqualify either of them from state funding), the female partner is likely to have far fewer assets.  Women on average earn less in their working lifetime (due to lower paid jobs and part-time posts); their pension will be less, because of the very life expectancy that means they are more likely to need care; and they may have had a career break to bring up children or to care for elderly relatives themselves, which means they have made fewer pension contributions and have less disposable cash to save for retirement or the “care insurance” the government now wishes to promote.

So the length of time until a woman expends all her assets on care will be shorter than for the equivalent man, while the time spent in care will be longer. More women may therefore face a traumatic move into cheaper care in very old age, and/or will die with little or nothing to leave to their family.

And what of the carers?

Looking after someone with a long-term, chronic or degenerative disease is hugely draining of both time and resources. A relative may start to help out informally, while also keeping up a full-time job. But as the loved one’s needs increase, the carer may have to reduce working hours or give up paid work completely. If they are self-employed, they may find themselves losing out on work opportunities, due to decreased availability and the stress of being on 24-hour call for emergencies.

If they take on the caring role full time, they will find that Carer's Allowance is £69.70* per week; probably much less than they might have earned in the workplace. And they will only be eligible if the person they care for is also receiving a qualifying disability benefit – in the case of a person with dementia who resists formal diagnosis, this might not be easy to achieve. Many family carers may therefore find themselves living on their savings in order to take care of someone else, which in turn reduces their own capacity to plan for care.

Then there is the toll on personal relationships.  A social life is hard to maintain when you lose touch with work colleagues, have no disposable income, and little or no respite from the person you care for.  Marriages come under strain and may break up; or if you have become a carer at a relatively young age (as many more will do, with older first-time parenthood), you may never have formed a long-term relationship.

Of course there are many male carers (particularly of spouses) who experience these hardships too and may arguably find the loss of income and status even more of a shock; but there are far more women in this situation. Women remain the primary carers of children and thus are more likely to find themselves sandwiched between conflicting care demands and work in their middle years or indeed retirement. And women who have devoted their twenties, thirties, or forties to caring for parents may miss out on having children altogether, which leaves them without family support in their own old age.  Men at least have the continued potential to create another family life.

So that’s the situation on the ground: more women as both carers and cared for, struggling on fewer resources than their male counterparts.  And who makes the public policy for care needs?  Men.

The Sex and Power Report 2013 (2018 update here**), examining ‘Who Runs Britain?’, revealed that women remain very much in the minority at the higher end of office in most walks of life. (At that time only 22% of MPs were female; by 2021 that had risen to 34%, but women were still notably absent from key Cabinet posts.) The majority of media commentators, particularly in the “serious” areas of politics and finance, are also male, and, I would suggest, less likely to confront the above privations at first hand.

In early 2013, when the care-funding recommendations of the Dilnot Report were again on the news agenda, I listened to a radio debate in which a male MP*** said that, although it was regrettable that some people had to sell their homes to meet care costs, it was not unreasonable.  He could sympathise, he said, as his mother had been house-bound for the last two years of her life, and he and his siblings had been contemplating residential care for her.  In the event, she passed away before they had to make the decision; but if they’d had to sell the family home, they would have faced that with equanimity, because they were all grown up with careers, homes, and children of their own. They didn't need that inheritance. 

He may have meant well.  But I couldn’t help thinking his situation was probably not as representative as he imagined. Yes, if you have a good professional job with occupational pension and other benefits, partner and siblings to share the caring responsibility, a house and children of your own, you may well be able to meet a parent’s needs with relatively little disruption to your own life.  But many carers lack one or more of these things.  Some (most often single women) give up their own homes to move in with the person who needs care, only to find themselves homeless when that person later has to go into residential care and siblings demand the family home be sold to meet costs.

And I would be willing to bet that, if that MP’s mother had needed full-time care within the family, and he had female siblings, it would not have fallen to him to give up his career – income, status, and social network – to take care of her at home. Indeed, many women find themselves becoming full-time carers not just to parents, but to aunts, uncles, or parents-in-law, while their husbands continue with their careers. It may be that this is the most practical option for some; at least these women have a partner for financial support. Single carers of both sexes have to manage without.

So whenever I hear male politicians and pundits opining so dispassionately on the fiscal equations of care provision, as if money were the only issue, I can’t help but think they might view it a little bit differently if they were personally liable to spend the prime years of their lives alone at home with a chronically-ill relative, attending to that person’s every need including continence, for a maximum of £69.70 per week.

On 10 January 2013, there was a parliamentary debate on dementia, organised by the Committee of Backbench MPs.  You can read the transcript here (scroll down to Column 515, Paul Burstow):

Hansard 10 January 2013

Some fine, informative, and heartfelt contributions were made by the MPs present, most of whom had first-hand experience of the issue.  It was the kind of debate to restore faith in politics.  Except that it passed with almost zero coverage.  The previous debate was on Syria – a “sexy” subject that was attended by far more members and covered extensively in the media.

I watched the dementia debate live online and found it incredibly moving; I cheered many of the statements made.  But when I later tried to send a BBC iPlayer link to others who might have missed it, I found that only the first hour of that day’s session was included – the Syria debate, of course.

Now I don’t dispute the importance of events in Syria as a major international humanitarian and political crisis.  But it’s not one for which the UK government has direct and exclusive responsibility.

It seems to me that the contrasting value placed on those two debates is emblematic of our society’s macho priorities. The Backbench MPs' dementia debate shows that there are hard-working, thoughtful, genuine politicians, who truly identify with issues relevant to their constituents. But they remain, on the whole, backbench**** MPs.

To those at the top of public life, grandstanding on the world stage is more important than addressing the daily needs of ordinary people who depend on them and pay their wages. We can send troops to Afghanistan, consider interventions in Libya, Syria, and Mali, but there’s no money, we're told, for social care. Might that be because it’s “women’s work?”


* updated 2022.

** Read updated Sex & Power Report 2018.  

*** Conservative MP Mark Field, in June 2019 suspended as Foreign Office minister after forcibly ejecting a female climate change protester from a dinner at London's Mansion House.

**** In September 2015, MPs Barbara Keeley and Debbie Abrahams, both passionate advocates of carer issues, who spoke at the Dementia Debate on 10 January 2013 (see Hansard above, columns 544 & 551), were appointed to posts in the Shadow Cabinet.  As of June 2016, Debbie Abrahams has been Shadow Secretary of State for Work and Pensions; in October 2016, Barbara Keeley was appointed Shadow Minister for Mental Health and Social Care.