Blog – Who Gets Left Out of Dementia Prevention?

In my ongoing quest for a new role (yes, I’m very much on the market, consider this a gentle act of informal outreach, particularly if you do happen to be hiring…), I’ve been spending a fair bit of time on LinkedIn. Perhaps it’s the particular intersection I occupy, sitting somewhere between dementia research, public engagement, and inclusion, but I’ve noticed a trend in the conversations happening around me. Increasingly, I see posts about who gets to define the narratives around prevention, risk, and responsibility. And honestly, it has got me thinking: when we talk about preventing dementia, who are we really talking to, and who are we leaving out?

The rise of prevention as a dominant narrative

Since the landmark 2017 Lancet Commission on Dementia Prevention, Intervention, and Care report, the concept of ‘prevention’ has increasingly taken centre stage in how we talk about dementia. Part of that report – the idea that up to 35% of dementia cases may be preventable through addressing modifiable risk factors – led to a pretty tangible change in the narrative of dementia risk, moving dementia from something once seen as an inevitability of the ageing process, to something influenced by exposures throughout the lifetime.

As a result of this, research funding priorities have shifted, public health campaigns focused on risk reduction have emerged, and a surge in discourse around “brain health”, which encourages individual responsibility. Although this move has opened the door to greater optimism, and can help individuals to feel as though they can take actionable change into their own hands, it does raise critical questions over who this message reaches, and who is left out of the prevention conversation.

What if you can’t ‘just’ eat better or exercise more?

Dementia prevention is often framed around individual behaviours – eating healthily, exercising, staying socially connected. Whilst these factors are undoubtedly important, this framing risks obscuring a critical truth: not everyone has equal access to the resources that enable these behaviours. When we focus narrowly on lifestyle, we sideline the social and structural forces at play – poverty, racism, ableism, housing and healthcare inequality – that shape both exposure to risk, and the capacity to reduce said risk.

If we use hearing loss as an example (now widely acknowledged as a significant modifiable risk factor for dementia, with the 2020 Lancet Commission suggesting that it alone could account for ~8% of dementia cases), we can start to understand the reality of how this inequity begins to play out. In the UK, hearing aids are available free on the NHS, yet uptake remains low. The reasons for this range from stigma and diagnostic delays, to lack of follow-up support and poor device quality, all of which disproportionately affect people from marginalised or under-resourced communities. Across the globe, the situation is starker, with these devices entirely unaffordable or unavailable, particularly in areas that are rural or low-income.

Similarly, many other so-called “modifiable” risk factors, such as poor diet, physical inactivity, or air pollution, are shaped more by postcode than by personal decision-making. People living in areas of socio-economic deprivation may lack access to green spaces, safe walking routes, or affordable nutritious food. This can be seen across the UK, including in the city I live – Glasgow. Glasgow has one of the shortest live expectancies in Europe, and several areas which could be considered ‘food deserts’, due to limited access to affordable fresh fruit and vegetables. This sort of issue is challenging for an individual to surmount and requires approaches like repurposing of vacant land to increase access, but the idea of dietary improvement as a modifiable risk factor misses such nuances.

Education is another good example of inequity and a critical protective factor and is tightly entwined with various broader determinants of inequity, such as poverty, racism, and migration status.

We urgently need prevention strategies that move beyond individual willpower and towards structural accountability. Of course, personal awareness does matter, but placing the onus on individuals, particularly those with the fewest resources, risks reinforcing the very inequalities we are aiming to address. As Marmot (2015) reminds us, it is “the circumstances in which people are born, grow, live, work and age” that most profoundly shape our health.

In Finland, dementia prevention programmes are delivered at the community level through libraries, churches, and local markets—making brain health advice more accessible to people regardless of income, education, or digital access. It’s a real-world example of equitable prevention in action!

Who is left out of the prevention conversation?

Even as dementia prevention gains visibility in policy and public health agendas, important voices are being left out, particularly as the research that underpins many such prevention guidelines is often based on majority populations whose social and cultural contexts don’t reflect the full diversity of lived experience.

Such exclusion can take many forms. For example, those from racially minoritised backgrounds are often under-represented in the very research that defines the idea of “modifiable risk.” Some risk factors might be more prevalent in these groups, such as hypertension or diabetes, but these individuals are also more likely to be met with delays in diagnosis, structural racism in healthcare settings, and poorer access to preventative services. And yet, the prevention narrative rarely addresses structural aspects like these, or the mistrust that may exist due to historical abuses in research.

Similarly, the experiences of those living with intellectual disabilities are often missed from prevention campaigns, despite a significant increase in risk of developing dementia at a younger ages, especially in populations such as people living with Down Syndrome. Oft-touted prevention advice, such as “avoid loneliness” or “be socially engaged” may be irrelevant or inaccessible to those whose lives are shaped by chronic exclusion, limited independence, or living in settings that reduce opportunities for connection.

People who experience mental ill-health, LGBTQIA+ communities, individuals with precarious migration statuses, and those who are unhoused or living in unstable housing situations also face increased risks, given a lifelong exposure to adversity, stigma, and neglect. Yet, again, the realities of such experiences and their interplay with “modifiable risk” are rarely acknowledged in public-facing prevention strategies.

By failing to address the experiences of these people, who are most affected by structural disadvantage, we risk reinforcing the very inequities we claim to be addressing. Without confronting barriers faced by those left out of the prevention conversation, our efforts will remain incomplete and unequal.

Rethinking our goals – what would equitable prevention look like?

I want to be very clear here – efforts to make dementia prevention more inclusive are already underway. Co-production, community engagement, and inclusive research practices are gaining traction, and these shifts really matter. But, to meaningfully embed equity in prevention, we need to move beyond simply inviting people into existing systems, and instead towards changing the systems themselves.

This means rethinking what “successful prevention” looks like. Rather than focusing solely on individual lifestyle changes, we should ask: are we removing barriers that make those choices possible in the first place? Are we addressing the social and environmental determinants that drive the unequal risk?

Equitable prevention also means investing in the kinds of structural changes that benefit those communities that are most underserved. And it also means embedding these priorities into funding decisions, policy making, and research agendas, and not just add-ons, but as foundational principles.

The goal isn’t to discard or diminish what has already been done, but is to build on it, push it further, and make sure that efforts to prevent dementia are grounded in justice as much as they are in science. If prevention is to be truly effective, it also has to be fair – not just in intention, but also in outcome.

Towards a fairer future: reimagining dementia prevention

The challenges outlined here are significant, but they are not insurmountable. Both around the UK and further afield, people are already doing a great deal of work to imagine and enact a more inclusive approach to dementia prevention, one that is rooted in equity, justice, and lived experience.

Researchers are beginning to ask better questions, not just stopping at “what causes dementia?” but also “for whom, in what context, and under what conditions?”, and this is being met with a growing interest from policy makers into the social determinants of brain health. There are also powerful examples of co-production, community-led health promotion, and more inclusive research practices that are helping to reshape what dementia prevention looks like in practice.

To be clear, I’m not arguing that we abandon prevention altogether. Rather, it is about doing prevention better. It means recognising the role of social infrastructure, and where this fails to make prevention feasible for everyone, and it means designing research alongside the people most affected by dementia risk, not just designing research for them.

We all know that change isn’t going to happen overnight. But small shifts across various aspects of the dementia field can add up to something transformative. We need to ensure that our prevention efforts reflect the real world, as it is: complex, unequal, and full of potential. With intention, equity, and collaboration, we can move from talking about risk, to actually reducing it. Not just for some, but for everyone.

Jodi Watt

Author

Dr Jodi Watt is a Postdoctoral Researcher at University of Glasgow. Jodi’s academic interests are in both healthy ageing and neurodegenerative diseases of older age, and they are currently working on drug repurposing for dementia. Previously they worked on understanding structural, metabolic and physiological brain changes with age, as measured using magnetic resonance imaging. As a queer and neurodiverse person, Jodi is also incredibly interested in improving diversity and inclusion practices both within and outside of the academic context.

Find Jodi on LinkedIn