This project was exploratory in nature and set out to assess whether falls in the context of dementia represent a worthwhile and meaningful area for further research. It aimed to establish whether people living with dementia and their carers felt that more research in this area was needed, and to understand their key concerns, priorities, and lived experiences in relation to falls. Insights were gathered directly from (1) people living with dementia and (2) carers of people living with dementia to inform the development of future research, including a planned research fellowship and wider collaborative projects within the department, and to support the design of dementia-inclusive approaches to falls prevention that are grounded in what matters most to those affected.

– Dr Leanne Greene, University of Exeter

Why this matters

Falls are often talked about as accidents, something that “just happens”. But for people living with dementia, a fall can be life-changing. It can affect confidence, independence, relationships, and how safe someone feels in their own body and home.

People told me that the fall itself was sometimes only part of the story. What really stayed with them was what came after – fear of falling again, being treated differently, or worrying that speaking up would lead to restrictions or loss of independence. As one individual put it, it was “the aftermath of the fall” that had the biggest impact.

Falls can also mark a turning point. For some people, they are followed by reduced activity, loss of confidence, or a gradual decline in physical, emotional, or social well-being. Families and carers are deeply affected too. Many help someone up after a fall, manage injuries, and fill gaps when services are hard to access.

Yet falls in dementia are still often seen as inevitable, rather than as moments where early support might prevent further problems. This work matters because it helps draw attention to falls and their emotional impact, and why it may be helpful to respond earlier, before they lead to longer-term changes in independence or wellbeing.

What’s new or interesting

In this project, people living with dementia and their carers were asked directly about their experiences, to help understand falls and support needs from their perspective.

They described falls as unpredictable, happening anywhere, at home, on stairs, in the shower, or outside. Many people said they didn’t know why they were falling and found this uncertainty distressing. Some felt their concerns weren’t fully explored, with falls sometimes explained simply as part of dementia, without proper checks or follow-up.

The emotional impact came through strongly. People spoke about fear, embarrassment, and hiding falls because they worried about being judged or having activities taken away. One person described the experience as “like being hit by a train”.

At the same time, people were clear about what mattered most: staying active, staying connected, and continuing to do the things that give life meaning. Many felt that the right support, at the right time, could help prevent a fall from leading to further loss of confidence, independence, or quality of life.

This work highlights that responding early and appropriately after a fall may help prevent a cascade of further problems, rather than allowing falls to become a trigger for avoidable decline.

What happens next

This was a small project, but it has already influenced how I think about future research. What people told me will help shape work on falls and fracture recovery that includes people living with dementia and looks at how early support after a fall might help prevent further physical, emotional, and functional decline.

The project also gave me the chance to connect with people living with dementia and their carers. Several have said they would like to stay involved and help guide how the research develops, and I would like to explore ways for some to be involved more formally in future work, for example, as co-applicants or as part of advisory boards and panels.

As an early-career researcher, this small grant was particularly valuable. It gave me protected time to do the early groundwork that larger studies depend on, especially spending time properly engaging with people living with dementia and their carers. Meaningful public involvement is a vital part of good research, but it is often difficult to fund at an early stage. Support from the SPIN-D Network+ Flexible Fund made this possible. The network brings together researchers, health and care professionals, and people with lived experience to strengthen dementia research and prevention. Small grants like this create space to listen, build relationships, and develop ideas carefully, before moving on to larger funding applications.