The evolving lifeworlds of older people living and dying with advanced dementia – An ethnographic study of end-of-life trajectories

1/11/2025 to 31/10/2029
 

Experiences of people with dementia are known to vary greatly, among individuals as well as throughout disease progression and towards death, resulting in diverse and complex needs throughout the end-of-life trajectory. Efforts have been made to understand dementia trajectories, however, we know very little about how people with advanced dementia, as opposed to those with mild or moderate dementia, experience their health and how circumstances unique to each individual (e.g. living situation, social connections) shape their end-of-life trajectories. 
This project aims to understand the end-of-life trajectories of people with advanced dementia through their own perspectives and those of their caregivers. It will overcome common challenges of conducting longitudinal research with older people and of involving people with advanced dementia in research. 
We will conduct an ethnographic study combining repeated participant observation with ten people with advanced dementia with longitudinal narrative interviews with their professional and family caregivers, followed by a multi-methods integration of the results. 
This work will achieve a holistic understanding of the dynamic nature of the end-of-life trajectories of people with advanced dementia, and propel developments towards empathetic, person-centered care and appropriate policy development.

Fonds Wetenschappelijk Onderzoek