What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings.

BACKGROUND: The need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to palliative care, yet little is known about the care provided to people with dementia at the end of life. This study aimed to establish evidence related to end-of-life care for people dying with dementia in hospital compared to other settings. METHODS: A retrospective clinical audit of people who had a diagnosis of dementia and had accessed services within a local health district, who died between 2015 and 2019, was conducted. A total of 705 people were identified, and a subset of 299 people randomly selected for manual audit. Chi-square p-values were used to compare the place of death, and a t-test or non-parametric test was used to assess the significance of the difference, as appropriate. Measures of functional decline within one month of death were assessed using mixed effects logistic regression models. RESULTS: The characteristics of people differed by place of death, with people who died in hospital more likely to be living at home and to not have a spouse. Less than 1 in 5 people had advance care directives or plans. Many were still being actively treated at the time of death: almost half of people who died in hospital had an investigation in their final 72 hours, less than half of people were coded as receiving palliative care at death, and more than 2 in 3 people did not get access to specialist palliative care. Declining function was associated with the terminal phase. CONCLUSION: This study provides novel insights for those providing end-of-life care for people with dementia. Healthcare professionals and policy makers should consider how demographic characteristics relate to the places people with dementia receive end-of-life care. The care provided to people with dementia in the last year of their life highlights the need for more support to prepare advance care documentation and timely consideration for palliative care. Changes in markers of nutritional status and function in people with advanced dementia may help with identification of terminal phases.

Improving end-of-life care for people with dementia: a mixed-methods study.

BACKGROUND: Improving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement. METHODS: The mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach. RESULTS: Five areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care. CONCLUSIONS: There are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.

Models of care for people with dementia approaching end of life: A rapid review.

BACKGROUND: People with dementia have different care and support needs at their end of life compared to people with other life-limiting illnesses, and general palliative care models may not meet the needs of people with dementia and their carers and families. Some dementia-specific end-of-life care models have been implemented, and a summary of existing models was undertaken to inform development of a local model. AIM: To identify best-practice models of care for people in the advanced and end stages of dementia, and their families and carers. DESIGN: A rapid review with narrative summary of peer-reviewed articles and grey literature was conducted. DATA SOURCES: Ten databases were searched for articles published between January 2000 and April 2022. Inclusion criteria were: all care settings; AND the model focuses on people with end-stage or advanced dementia; AND contained multiple components. RESULTS: Nineteen articles or reports, describing twelve dementia-specific models of end-of-life care in a range of care settings were identified for inclusion in the review. There is strong evidence that the principles of best practice palliative care for people with advanced dementia are well known, but limited examples of translation of this knowledge into integrated models of care. The key issues that emerged from the findings were: referral and admission to care, integration of care, sustainability and evaluation. CONCLUSIONS: Findings can be used to inform development of improved end-of-life care pathways for people with dementia, but well-designed research studies are needed to evaluate the effectiveness of integrated models of care for this vulnerable population.