Factors associated with the final place of care of people with advanced dementia in receipt of home-based palliative care

Tay, Riyin and Preston, Nancy and Simpson, Jane (2025) Factors associated with the final place of care of people with advanced dementia in receipt of home-based palliative care. PhD thesis, Lancaster University.

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Abstract

Background Dementia is a global public health priority with complex palliative care needs for the person with dementia. As the population ages, instituting policies and practices to support the dying process of people affected by dementia better is imperative. An evaluation of an integrated home-based palliative care programme for people with advanced dementia in Singapore showed overall health benefits. However, it was unable to meet the preferred place of death of a substantial minority. Identifying factors affecting where people with advanced dementia spend their final days could improve the care model and inform policies and practices. Aims, Methods and Results There are two parts to this study, which was guided by a theory-informed model categorising place of death determinants into individual, illness-related and environmental. The first part was a systematic review of place of death determinants for people with advanced dementia, using meta-analysis. Four electronic databases were searched, supplemented by hand-searching/citation tracking. Thirty-three papers reporting quantitative data on factors associated with place of death were included and appraised using QualSyst with the certainty of evidence determined using the GRADE criteria. Data were analysed using random effects. Being younger, male, from a Black ethnic minority group, having pneumonia, COPD, and better functional status as well as city living predicted hospital death, while cancer and capitation-based funding predicted death in long-term care. Being married was associated with home or hospital death as opposed to dying in long-term care. As place of death provides limited information about the dying process, an empirical study was undertaken to identify factors affecting final place of care (home, inpatient hospice, hospital) and its goal-concordance in people with advanced dementia receiving home-based palliative care in Singapore. Final place of care was defined as the place where care was received for at least three days before death. Underpinned by postpositivism, a retrospective cohort study design using secondary data analysis was adopted. The study included 284 individuals enrolled in the service, with at least three days at the place of death. Data relating to the independent variables, the selection of which was informed by the systematic review and stakeholder engagement, were extracted from the electronic medical records and analysed using multivariate binomial logistic regression. Sensitivity analyses were performed to ensure robustness. Home was the most common final place of care (81.7%). Better nutritional status, better functional status, and inconsistent preferences for place of care and death predicted hospital as final place of care (9.2%). Discomfort, oral feeding challenges, unemployed families, and psychosocial distress predicted inpatient hospice admission (9.2%). Better prognosis, an infection episode, higher caregiver burden and psychosocial distress predicted non-concordance with preferences (14.4%). Despite facing challenges at home, admissions to inpatient hospice were often late and unplanned. Unlike place of death, relatively unchanging factors, such as an individual’s demographic and chronic comorbidities had no effect on final place of care, distinguishing it as a novel concept from place of death. Conclusion These fresh insights on the unpredictable, protracted, and multifaceted challenging nature of advanced dementia end-of-life care inform the need for early and regular education and review of the disease trajectory and care plans with families, as well as greater caregiving, psychosocial and financial support. A final place of care model was also developed from refining the original model, contributing to theory and research. It is hoped that these results could contribute to the global public health goal of facilitating people with advanced dementia not just to die but to spend their final days at the place of their choosing.