Women with Dementia: Speaking from the heart
Is dementia a women’s issue? And if not, isn’t it high time it was?
In theory at least, this question has already been answered, by a steady stream of reports marshalling the evidence[1] [2] [3] over the past few years. We now know that dementia has not only become the leading cause of death among British women – but also that British women are far more likely than men to end up as carers of those with dementia. And in fact, across all regions of the world, dementia disproportionately affects women. Both prevalence and risk are higher – and, intriguingly, the symptoms women typically experience are more severe. Two thirds of primary caregivers are women – and, in all formal care services (whether in the community, hospitals, or care homes), the workforce is predominantly… women.
And yet… there is so little research focusing on the gender issues in care or dementia, and the experiences and voices of the women affected are almost always missing.
Led by Nada Savitch, we recognised this early on. Our JRF-funded project with York University [4] aimed to use stories and reflections from individual women to inspire and inform the debate in a unique and insightful way. Kicking off with a national conference at York University in November 2014, the project led on to a report, a short literature review, a website featuring thoughts and reflections, and several pieces of work with smaller groups. Together these showed that the way women experience dementia is affected by gender, but also by many other factors – including education, ethnicity, sexuality, class, age, and disability. It also highlighted frequent resistance to framing – or even talking about – dementia as a women’s issue.
So what has happened as a result of all this work? Well, in our view, not a lot! National policies and strategies across the UK hardly mention women’s needs or contributions as a specific issue. There is little debate about the higher level implications of what we have discussed – the possible impacts on how we as a society should arrange and adjust matters of pay, benefits and pensions, research priorities and funding, reasonable adjustments, employment policies, public toilets, continence services and the menopause, scammers, family counselling.. the list goes on. And few if any professional groups are specifically trained in what to talk or ask about when interacting with women with dementia.
So that’s why, this summer (2019), we held a wonderful gathering of women in London, to shine a new spotlight on the issue. The private, women-only event, was hosted by the amazing Jane Garvey (presenter of Woman’s Hour and the ‘Fortunately’ podcast), and brought together 14 women living with dementia, and some of their supporters too. They spanned three decades in age, they were straight, gay and non-binary, they were from ethnic majority and minority communities – and they travelled in from Belfast, the Black Isle, Brecon and beyond. Some were single, some in couples – some had children, others didn’t. They included a former police officer, a manager, an international writer, a nurse, a minister and a care worker.
One of them, Wendy Mitchell, later blogged: “Everyone started to arrive, and the room started to fill with laughter and pure joy…Hugs were in abundance, new friends made and old friends reacquainted…that feeling of instant unconditional friendship hugging the room.”
In the space of just a few hours, we talked about retaining femininity, respect in the workplace (and in general), being ‘talked over’, losing roles, making adjustments and compromises within the family, sex, incontinence… and so much more. Here’s Wendy again: “We spoke of the role of mother being renegotiated. Dementia strips away so much from you, but stripping away the role of mother hits hard. I’m lucky in so far as me and my daughters were able to talk about it. Some families fail to talk and suddenly a mum with dementia is stripped of the most precious role – because those around her believe she now needs to be cared for.”
Serious issues all – but nevertheless there was much laughter in the room and many comedy moments (some completely unrepeatable). Every woman there inspired the rest – they were indeed, as one present described them: “some of the strongest, most honest, warm-hearted women I’ve ever met. They are more than inspiring.” The women they gained confidence and strength in just being together – and found that they had so much in common that needs recognising and addressing. As another said: “we have a choice in life – lie down and die or get up and fight.”
So what next? Within the DEEP network, we have already started a regular online meeting place for women with dementia, using the ZOOM platform. The ‘ZOOMettes’ will doubtless continue to grow, flourish and support each other. But the numbers who can engage with this are of course minuscule in the wider scheme of things (there are over 600,000 women with dementia in the UK [5]). So we will use the outputs of the event – a film, photos and an accessible booklet – to spread the word much more widely. There will doubtless be blogs and Dementia Diaries[6] too, from many of those who took part. We hope to co-produce guidance for professionals such as nurses and occupational therapists on ‘what to ask women with dementia.’ And we’d like to reach many more of the public through mainstream radio programmes and podcasts.
But at the end of the day, we’re a small outfit. We need many more allies (both female and male) to take up these issues and to shout out loud that Yes, dementia is a women’s issue! After all, it’s a matter of rights and equality. So what can you do?
[1] ‘Women and dementia: A marginalised majority’ (ARUK 2015)
[2] ‘Women and dementia: a global research review” (ADI 2015)
[3] GADAA https://www.gadaalliance.org/women/
[4] ‘Dementia: through the eyes of women’ (Savitch et al:JRF 2015)
[5] https://www.dementiastatistics.org/statistics/numbers-of-people-in-the-uk/
[6] https://dementiadiaries.org/
Philly Hare
Co-Director, Innovations in Dementia
