At the SAHSU Environment and Health Coffee Morning in April, Dr Angela Pinot de Moira shared her early-stage research on how people with dementia die.
Although dementia is now the leading cause of death in England, many people with the condition die from other causes such as heart disease or pneumonia. Angela’s research looks at which health conditions contribute to deaths in people with dementia and how these patterns vary across England. She hopes this will help identify who is most at risk of dementia and what other factors might influence that risk.
During the coffee morning, Angela hosted three 25-minute table discussions with small groups of attendees, representing a mix of ages and genders. As this is a sensitive topic and her research is still in its early stages, she was particularly interested in how to communicate her research to the public. She wanted to explore: How do people feel about talking about death? What language is best to use? How much do people know about how deaths are recorded and used in research?
Instead of the usual academic slides, Angela used a short written summary and an example map to explain her project. The format was surprisingly effective: participants were engaged, willing to share personal stories and contributed thoughtful insights. Angela also shared some of her own experience, as her mother lived with dementia.
Participants generally preferred clear terms like “death” or “mortality” over euphemisms like “passing” or “losing someone,” which they found vague or unhelpful. They also felt that terms like “end-of-life” could sound alarming. There was general agreement on the need for more open conversations about death and dying.
Some people shared their experience with death certificates, noting that dementia is often not recorded, depending on the immediate cause of death. This raised questions about how much information is captured on official records.
The event has helped Angela feel more confident about speaking about death and dementia with the public, and what language to use. The level of interest and the stories shared were very motivating. Building on these discussions, Angela hopes to explore new ways to involve participants, perhaps through co-authored summaries of her research findings.