Palliative care needs and utilization of specialist services for people imminently dying with dementia: A national population-based study

Background: There is a growing emphasis on the importance of availability of specialist palliative care for people living with dementia. However, for people imminently dying with dementia, we still have little knowledge about their palliative care needs and utilization of different specialist services. Objectives: To (i) assess palliative care needs and other clinical and social characteristics of people imminently dying with dementia on their last admission in the context of community and inpatient palliative care services before death; (ii) compare care needs between patients requiring community-based and inpatient services; (iii) determine how and whether such care needs affect utilization of different palliative care services. Design: Observational study using data from the Australian Palliative Care Outcomes Collaboration. Settings: Specialist palliative care services across Australia registered in the Palliative Care Outcomes Collaboration. Participants: A total of 3361 people who required specialist palliative care principally for dementia (including Alzheimer's disease and other dementias), and whose death occurred between 1 January 2013 and 31 December 2018. Methods: Five validated clinical instruments were used to collect point-of-care outcomes on each individual's function (Resource Utilisation Groups - Activities of Daily Living & Australia-modified Karnofsky Performance Status), symptom distress (Symptoms Assessment Scale & Palliative Care Problem Severity Score) and other clinical characteristics (Palliative Care Phases). We fitted multivariate logistic regression models to examine the association between these clinical outcomes and utilization of different specialist palliative care services. Results: The majority of people imminently dying with dementia had absent or mild levels of symptom distress but experienced high levels of functional decline and needed substantial assistance with basic tasks of daily living in their last days of life. Large disparities in symptoms distress and functional decline between inpatient and community groups were not observed although differences in assessment scores were often statistically significant. Poor functional outcomes (odds ratio = 1.77, 95% confidence interval: 1.24–2.52) and “non-stable” palliative care phases (odds ratio =24.51, 95% confidence interval: 12.03–49.96) were positively associated with use of inpatient versus community palliative care, whereas there was no clear association between the majority of symptoms and use of different care services. Conclusions: The majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in the community. Development of a dementia-specific palliative care pathway is needed to promote needs-based palliative care delivery models. Tweetable abstract: the majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in community.