“Okay, that's my life story, goodbye”: a photo-elicitation study exploring what provides meaning when living and dying with dementia

Our findings provide an assets-focussed understanding of how people with dementia may face approaching the end of their lives. Whilst cognitive and social function loss are inevitable as the disease progresses, supporting selfhood and a sense of connection beyond oneself may facilitate meaning, including meaningful dying.

1. Introduction

Dementia is the leading cause of death in England and Wales1. However, the evidence-base to guide care for people with dementia approaching the end of life remains limited and the views of people with dementia themselves are underrepresented2,3. This study aimed to explore what is meaningful when facing the end of life from the perspective of people with dementia.

2. Methods
Photo-elicitation methods were used to guide unstructured, face-to-face interviews4. Participants took photographs over a 12week period, which were then used as prompts for qualitative interviews. Interviews were analysed through a hermeneutic phenomenological approach5.
Use of participant-generated photographs was chosen in discussion with Patient and Public Involvement (PPI) members to facilitate expression of things that may otherwise be difficult to find words for, and act as an aide-memoire to support engagement.
People with dementia aged over 65 were recruited from Greater London via purposive sampling through community and charitable networks. A sample size of 10-15 was anticipated to provide sufficient information power to meet the study aims, whilst remaining feasible in the context of the intense analytical approach6.

3. Results
The experiences of ten people with early dementia were explored in depth. They shared similar sociodemographic contexts, being predominantly white (n=10) and female (n= 8). Half had achieved postgraduate education (n=5).
Analysis generated five themes: ‘‘1. A familiar and safe space’, ‘2. Belonging through human & non-human relationships’, ‘3. Embodied touch and supporting the body’, ‘4. Telling the story to make sense of lived time’, and ‘5. A sense of connection beyond oneself’.
When faced with the challenges their illness produces, participants found support in surrounding themselves with familiar objects and relationships that connected them to
their narrative history.
In addition to reinforcing selfhood, meaning was found in recognising connections beyond their selves: engaging with nature or faith practices as means to contribute to those they would leave behind. The natural world in particular was described as a place to find feelings of peace and joy as well as reflect upon what legacy would be left when they were gone.

4. Conclusions
Meaningful dying in dementia is possible through supporting the personal story and recognising contribution beyond oneself.

References
1. Office for National Statistics. (2023). Deaths registered in England and Wales: 2022. Accessed at: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregistrationsummarytables/2022
2. Takahashi, Z., Yamakawa, M., Nakanishi, M., Fukahori, H., Igarashi, N., Aoyama, M., Sato, K., Sakai, S., Nagae, H., & Miyashita, M. (2021). Defining a good death for people with dementia: A scoping review. Japan Journal of Nursing Science, 18(2), e12402.
3. Walsh, S. C., Murphy, E., Devane, D., Sampson, E. L., Connolly, S., Carney, P., & O'Shea, E. (2021). Palliative care interventions in advanced dementia. Cochrane Database of Systematic Reviews(9).
4. Phillipson, L., & Hammond, A. (2018). More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. International Journal of Qualitative Methods, 17(1), 1609406918782784.
5. Van Manen, M. (2023). Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Taylor & Francis.
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7. Zaman, M., Espinal-Arango, S., Mohapatra, A., & Jadad, A. R. (2021). What would it take to die well? A systematic review of systematic reviews on the conditions for a good death. The Lancet Healthy Longevity, 2(9), e593-e600.
8. Wolf, S. (2010). Meaning in Life and Why It Matters. Princeton University Press.