Why women are bearing more of the impact of dementia

If you’re reading this blog, you probably don’t need me to tell you that dementia is devastating for all those whose lives it touches. But it may surprise you to learn that its impact is hitting women particularly hard.

Over a decade ago, dementia became the leading cause of death for women – and our latest analysis shows that in the years since, it has not moved from this top spot, even at the height of the pandemic. Women are more likely than men to develop dementia. In fact, women over 60 are twice as likely to develop Alzheimer’s, the most common cause of dementia, as they are to develop breast cancer during the rest of their lifetime – and there have been no new treatments for the disease in a generation.  At the same time, women are also more likely to find themselves providing unpaid care for a loved one with the condition.

Yet research data from women is often missing. This challenge is by no means confined to dementia research, but this trend means the group most affected by dementia is not adequately represented in many research findings. At the same time, we’ve found that female scientists are also facing barriers, being less likely to move into senior positions.

None of this is acceptable.

The solutions aren’t quick or easy, and many of these challenges stem from systemic issues that require a sector-wide, and society-wide, approach to tackle them. But by shining a light on them now, we aim to kick-start a conversation about how we can start addressing some of these challenges.

Why are women more at risk of dementia?

It’s well-known that women tend to live longer than men, but this alone is not enough to explain why women are more likely to develop dementia. Of all people with dementia in the UK, two in three (65%) are women.

We don’t yet know exactly why this is. Some studies have highlighted hormonal changes, differences in the effects of high blood pressure, and different rates of physical activity as potential contributors. But to be able to draw firm conclusions, continued research in this area is crucial. If we can tease apart why certain risk factors may affect women differently, we could uncover important clues that could ultimately help reduce the number of people developing dementia in the future.

With a new Women’s Health Strategy as well as a new Dementia Strategy about to be unveiled by the UK government, now is an ideal time to address this. It’s important that these two strategies are joined up as they are rolled out. And the government must deliver its ‘Dementia Moonshot’ pledge to double research funding to support this work – including targeted funds to understand why women are more at risk.

To learn more about gender, biological sex and dementia risk, you can watch our recent Lab Notes session that explores this topic in detail. And to find out how you can take steps to keep your brain healthy and help reduce your risk of dementia, visit our brain health hub.

The gender data gap in medical research

Our analysis also shows that across the medical research sector, sex and gender differences are too often overlooked – and it’s a challenge that exists from basic discovery science all the way through to clinical trials.

For example, many drugs tend to affect men and women differently, and studies show women are more likely to experience negative side-effects. Yet a study of clinical trials in 2018 showed that 72% did not report the results of any sex-based analysis of their trial data.

In addition, trials often won’t recruit people with other medical conditions due to legitimate worries about how this may affect the ability to interpret the results. An unfortunate effect of this is that, since women are more likely to have multiple health conditions, they are also less likely to be eligible to take part in trials.

These issues are common across medical research. But with dementia affecting so many women, these issues are even more stark and it’s vital that we address them. We need life-changing new treatments to work for everyone with dementia, but if research is leaning on data from just one half of the population, we could be missing crucial things from the picture.

There have been welcome campaigns on this that have already started to have an impact. In our own work, we now require grant applications to consider equity, inclusion and diversity in their study populations. But there’s more that we and the sector can do to reduce the gender data gap, and we hope this analysis will help open the door for more action.

Join Dementia Research is an important route for studies to be able to recruit volunteers, both with and without dementia. This Dementia Action Week, we’re encouraging everyone – especially women – to register their interest in taking part in research.

What about the women leading dementia research?

Sadly, the situation is not much better for the women who are conducting research. Our analysis shows that right now, although the majority (60%) of dementia researchers are women, female academic researchers are less likely than their male counterparts to move up the career ladder into senior positions.

When we looked at our own research applications, we found just 37% of the grants we awarded between 2000 and 2020 went to women. Of those, 64% were for early career researchers, compared to 33% for senior researchers – and this is something we want to change.

There are a number of reasons why this might be happening. For example, women may face more challenges in demonstrating their impact if they have taken maternity leave (as with dementia care, childcare duties in the UK still overwhelmingly fall to women). And of course societal biases that have built up over centuries can be hard to escape, whether they’re conscious or not.

Dementia research is not the only profession where women are playing catch-up, but this doesn’t let us off the hook. Women entering dementia research need to know their careers have a future, and be able to fulfil their ambitions of transforming the lives of people with dementia. Without female scientists represented in dementia research, we may be missing vital perspectives that could, in turn, help us to gender data gap.

For our own part, we have committed to a trial of ‘blind reviewing’ for our next round of grant applications, in an effort to remove any bias. We’ll continually review this approach and look for other ways to address the current imbalance – we don’t have all the answers and we want to work with other organisations on this too.

Join the conversation

This is just the start of our work on this, and we’ll keep you updated as this develops over the coming months.

Right now, you can join the discussion by sharing your stories. How have you and the women in your life been affected by dementia?