Levelling the playing field: why inclusivity matters in dementia research

Science is not immune to gaps in inclusivity, and dementia research is no exception.

In one respect, inclusivity in research means paying attention to representation in scientific studies, for example recruiting people from diverse backgrounds into clinical research studies or using both male and female animals in experiments. But it goes beyond that – it is also about providing a diverse and supportive culture amongst researchers themselves.

But why does inclusivity matter in dementia research? Shouldn’t we be focussing on research that will lead to new treatments, better understanding of risk factors or more advanced diagnostics?

The answer is that inclusivity is not just a ‘box-ticking’ exercise – it is integral to finding a cure for the incredibly complex diseases that cause dementia.

We wanted to kick-start the conversation on inclusivity at our Research Conference in Aberdeen. We heard from four expert panellists, whose combined experience fuelled a truly inspiring discussion.

Under-representation in research studies

Of all people with dementia in the UK, 65 % (about two in every three people) are women. We’ve written before about how women are disproportionately affected by dementia.

Yet scientists have disproportionally used male rodents in the lab to study diseases like Alzheimer’s.

“Researchers thought that using female mice would cause problems in the data collected due to their fluctuating hormone levels,” explains Prof Tara Spires-Jones, based at the UK Dementia Research Institute (UK DRI) at the University of Edinburgh. “But recently scientists reviewed thousands of studies using rodents and they found that, most of the time, it makes no difference whether the mice are male or female. Unless you’re studying hormonal cycles in the animals, there is no reason why females should be excluded.”

The panel also highlighted how most volunteers for research studies, including clinical trials, are White. People from minority ethnic backgrounds are not widely represented in studies, despite also being disproportionately affected by dementia. This bias is evident in experimental methods – for example, when using electrodes to record brain activity. These methods are not inclusive for people with different hairstyles, for example afro hair, where it is more difficult to secure the electrodes to the scalp. In addition, people with darker skin are less likely to benefit from activity trackers where light is required to pass through the skin to generate a signal.

“In research papers, there is often a disclaimer acknowledging that the study participants are mostly White, and that there is a need to repeat the experiments in a more diverse cohort.” highlights Dr Jorge Gomez-Magenti of Alzheimer’s Research UK. “This means that we are missing out a large chunk of the population in research.”

This begs the question: how can we expect research to find solutions for everyone affected by dementia if the studies and data collection are not designed to accommodate a diverse population?

Dr Gomez-Magenti added: “We need to improve inclusivity so that we can help everyone affected by dementia, regardless of their gender, ethnicity, or background.”

Changing our mindset: making science more inclusive

“For research to be successful, it has to be equitable,” says Dr Rosalind Attenborough, a former researcher and now Research Culture and Communities Specialist at the Wellcome Trust. Despite this, there are major gaps in equity, diversity and inclusion in the research community.

For every 10 professors in the UK, only three are female. As for dementia research, a recent study led by Alzheimer’s Research UK identified that female researchers leave dementia academic research at higher rates than men.

UK Research and Innovation (UKRI), the major UK public funder of research, reported that over the past five years, seven out of ten principal investigators they’ve funded have been male, most of whom were White. Alarmingly, figures show that in 2020, fewer than one in 100 UK professors or senior academic staff members were Black, with only two in 100 occupying other academic roles.

“As I progressed in my career, I came across fewer and fewer people who looked like me,” recalls Dr Dayne Beccano-Kelly, now a Group Leader at the UK Dementia Research Institute in Cardiff. “It’s pretty much the same wherever you go – we have a global lack of diversity in science.”

Ms Tomi Akingbade, a PhD student at the University of Cambridge and founder of the Black Women in Science Network – a community for women of African and Caribbean heritage in various stages of their scientific careers – also commented on some of the challenges throughout her studies.

“It was as if science didn’t want me to be in it, and that science wasn’t made for people like me,” she says. “That’s why I founded Black Women In Science, to provide a community for others who shared similar experiences to mine.”

The network provides a safe space for members to seek support. “Providing safe spaces is one of the ways we can start to address the lack of inclusion in science,” adds Ms Akingbade. “But we need more support from major research funders to do this. Right now, a lot of the responsibility lies with us to maintain these communities, whereas the funders should be leading on this.”

Prof Spires-Jones added: “We have traditionally been taught about predominantly White, male dementia researchers who have made history in the field – but in reality, many more individuals of diverse backgrounds and ethnicity have made essential contributions to the field.”

“One strategy is to change the mindset of young people. Empower and inspire them so that they understand they can do science, regardless of their heritage” suggests Dr Beccano-Kelly. “It’s a conversation we need to have, and keep going, in order to make a difference.”

So, what can we do to make research more equitable, diverse and inclusive?

Despite alarming statistics highlighting gaps in inclusivity and representation in science, it is not all doom and gloom. Our panel discussed strategies to empower under-represented groups and initiatives allowing these people access to careers in research.

Our panel highlighted initiatives such as In2scienceUK, which provides students from low-income and disadvantaged backgrounds with placement opportunities in research settings. Aspiring Black Physiologists, run by The Physiological Society, provided Black secondary school students the chance to make their voices heard about diversity in science.

Tomi Akingbade stressed that funding bodies and researchers could do more to support students from disadvantaged backgrounds. For starters, “they should scrap unpaid work experience placements,” she said prompting the conference hall to erupt in cheers.

Finally, we asked our panellists what they thought the most important steps are to move forward and level the playing field in dementia research:

Dr Beccano-Kelly started by saying: “Inclusivity is “multidisciplinary”, and we need everyone to collaborate to create a diverse research community. Whether it’s about gender, race, disability or socioeconomic background, all of these characteristics should be considered together when we talk about inclusion. No one thing should be solely focussed on and we all need to build allyship for one another.”

“We now have data which highlights gaps in inclusivity, so we can begin to fill in those gaps,” says Prof Spires-Jones. “The fact that this discussion has also taken pride of place in the main research conference will help our voices be heard, which is essential for making positive changes.”

The panel discussion proved to be a highlight of the conference – and provided a basis for further conversations on this important topic and a chance for all the delegates to reflect on the policies, practices, and culture in their institutes.

Including for us at Alzheimer’s Research UK.

While six in ten of the early career research projects funded by Alzheimer’s Research UK were awarded to women in 2020, only three in ten senior projects were awarded to women, showing a significant drop in women in senior research projects funded by our charity.

Furthermore, as one member of the audience pointed out, this was the most diverse panel session of our conference – but diversity shouldn’t be reserved for discussions on this topic.

As a research funder Alzheimer’s Research UK has an important role to play in building a more equitable, diverse and inclusive research culture for our funded scientists, and in ensuring that research findings are relevant for everyone affected by dementia.

Evaluating the diversity in our research community is just the beginning – there are so many things we can do to help level the playing field in dementia research. This includes changing how we think about research impact, to make sure we count diverse contributions that benefit the research community. We also need to set the standard for using inclusive experimental models and representative study cohorts in dementia research.

We shall continue to engage with organisations to provide opportunities for researchers from underrepresented groups– an example of progress in this area was inviting British Neuroscience Association Scholars to participate in our Connect Day in October 2022. As set out in our five-year Research Strategy, one of our priorities is creating an equitable, diverse and inclusive culture.

Going forward, we will also assess how we can provide more support for all researchers, for example those with disabilities, members of the LGBTQ+ community and those from disadvantaged backgrounds. As highlighted in the panel discussion, it is not enough to just focus on being more inclusive towards one group of people, but instead it is essential that we improve inclusivity as a whole.

As we continue to raise awareness and respond to these important issues, we will create a more supportive scientific community, in turn improving the quality and design of research.

This is how we will get closer to our vision of a world free from the fear, harm and heartbreak of dementia – for everyone.

Find out more about Alzheimer’s Research UK’s Commitment to Equity, Diversity and Inclusion