As I was compiling a roundup of the last six months of dementia news for MacIntyre’s Dementia Special Interest Group recently, one story jumped out at me:
“In 2020, 46,000 women died from dementia, almost twice as many as men (24,000) – and more than died of COVID-19 (41,000).”
Before we go any further, just let that statistic about Covid-19 verses dementia sink in for a moment.
Imagine if dementia grabbed as many headlines as Covid-19
I personally find it shocking, and of course worrying as a woman myself and for all of the women in my life, that dementia poses a greater risk to women than that which was billed as the greatest modern-day threat to all humanity.
I don’t generally like to compartmentalise by characteristics like someone’s sex, purely because I think anyone affected by dementia, be they a man, woman or someone who is non-binary, is first and foremost a person who will have their own unique struggles with their dementia. But the statistics reported by Alzheimer’s Research are so stark in relation to women that they are hard to ignore:
“Dementia became the leading cause of death for women in the UK in 2011 and has remained at this position ever since, including during 2020 at the height of the COVID-19 pandemic.
Two in three people with dementia (65%) are women, and longer life expectancy on its own does not account for the higher incidence of dementia among women.
Around two thirds (between 60% and 70%) of people caring for loved ones with dementia are women.
Women receive worse healthcare than men in the UK, which has the largest gender health gap within G20 countries.
Across medical research, women are less likely to be included in clinical trials, despite being more likely than men to experience drug reactions.
Female dementia researchers are less likely to move into senior roles compared to their male counterparts, meaning research may be missing vital different perspectives that could help address the gender data gap.”
I talk in my Tier 2 Dementia Training for 3SpiritUK that women are disproportionally affected by dementia, and if anything underlines that fact it’s the statistics above. For the government’s part, they’ve included dementia in the Women’s Health Strategy for England that was published over the summer, and should we ever get a settled government we can only hope action will be taken to address this huge inequality.
What can women do now?
Government strategies aside, where does this leave all of us women at risk of being in the 65%?
Apart from worrying, which is pretty useless, what can we do? Well, Alzheimer’s Research did publish some recommendations that are worth noting:
With no current treatments in the UK able to tackle the diseases that cause dementia, the government’s forthcoming Dementia Strategy needs to target brain health to help more people reduce their risk of dementia, with an emphasis on risk factors that particularly impact women.
Ongoing research to better understand why dementia is more prevalent in women than men is critical – and the government must deliver its £160m Dementia Moonshot commitment to research, including funds targeted at answering this important question.
For research to yield results that are relevant to all those affected by dementia, data from women and sex-based analysis of results must be included.
Research funders and drug regulators must develop clear plans to ensure women can contribute fully to dementia research, both as participants and as researchers.
I personally signpost to The Lancet infographic on risk factors for dementia a lot. I think it’s a great visual that helps to show the things we can change, most notably by correcting hearing loss, something that I’ve championed with my mum whose worn hearing aids for many years.
We need to know more, and research is the only answer
What screams out from the Alzheimer’s Research recommendations is the need for research. I’ve long championed research: it is fundamentally important to us understanding, diagnosing, treating and hopefully one day surviving developing dementia. My first ever speaking engagement in 2012, just five months after my dad died, was for BRACE, and I was very proud to become a BRACE Ambassador in 2013.
Whilst the majority of my work is focused on supporting people already living with dementia, I cannot emphasise enough the need to support research too. One simple way to personally get involved in research is to register with Join Dementia Research. This is something I have done, and I know many other people who’ve done likewise.
Tomorrow (Tuesday 1 November) I’m also (virtually) attending BRACE’s fantastic yearly conference ‘Together 4 Dementia’. It’s a hybrid event, with an array of brilliant speakers who will doubtless teach us all a great deal, and I’d highly recommend attending. Online tickets are still available.
Keep demanding better
Learning about dementia helps us all to understand what may keep us healthier for longer, and how we can provide the best care, support and treatment for people living with dementia now, as well as supporting all of those who are caring for family members or friends with dementia.
Collectivity – as men, women and non-binary people – we must keep banging the drum for research, for learning, and for anything and everything that helps to make the ‘silent’ killer of dementia something we can ‘live with’ rather than ‘die from’.
Until next time…