A palliative approach to care for people living with dementia: exploring perspectives from health and social care providers working in long-term care

Background: The number of Canadians living with dementia is rising as our population ages and is projected to reach 1.4 million people by 2031. Dementia is a terminal neurogenerative condition and is a major contributing factor to the transition into long-term care settings for many. Currently, most persons living in long-term care settings in Canada have a form of cognitive impairment or diagnosis of dementia, and most persons with dementia will die in a long-term care setting. A palliative approach to care that is appropriate for persons living with dementia in these settings is essential both now and in the future. However, research demonstrates that in Canada, end-of-life care and experiences are suboptimal for persons with dementia. Further, most Canadian long-term care homes do not have a formalized palliative care program and the integration of a palliative approach remains uncommon. There is growing international and Canadian interest in palliative approaches to care for persons with dementia and in long-term care settings, but there is a lack of Canadian research that provides a dementia-specific focus on palliative approaches in long-term care settings. Objectives: This qualitative descriptive study explored the perspectives of health and social care providers working in long-term care settings on the use and optimal delivery of a palliative approach to care for people with dementia living in long-term care settings. Specifically, this study examined the following research questions: (1) How is a palliative approach to care being used with persons with dementia who live in long-term care; (2) What are the perceptions of health and social care providers roles in supporting a palliative approach to care with persons with dementia; and (3) What contributes to an optimal palliative approach to care for people with dementia in long-term care? Methods: Individual semi-structured interviews were conducted with 20 health and social care providers who work with persons living with dementia in long-term care in Southern Ontario, Canada. Data were transcribed, anonymized, and analyzed using conventional content analysis in NVivo 12. Results: Of the 20 participants interviewed, their occupations included: activation manager, assistant director of care, dietary aide, nurse practitioner, occupational therapist, personal support worker, physician, recreational therapist, registered nurse, registered practical nurse, social worker, spiritual care provider. Five categories were identified through conventional content analysis: (1) Need for a Shared Understanding of a Palliative Approach to Care for Persons with Dementia; (2) Discussions About Goals of Care and the Future; (3) “End-of-Life Care” and Psychosocial, Grief, and Bereavement Support; (4) Need for Collaboration and Relationship-Based Care; and (5) Recommendations for an Optimal Palliative Approach to Care for Persons with Dementia. Conclusion: Study results highlight that while palliative principles are recognized as important for persons with dementia, and components of a palliative approach are being used, there is a clear need for a shared understanding amongst staff, as well as further integration of a palliative approach to dementia care in long-term care. Study participants also identified recommendations for an optimal palliative approach for persons with dementia in long-term care, including: (1) Clarify roles in supporting a palliative approach for persons with dementia; (2) Support staff with grief and bereavement; (3) Improve staffing and funding models to be appropriate for the care needs of persons with dementia; (4) Timely and consistent care planning discussions; (5) Improve the availability and quality of end-of-life resources; (6) Improve the built environment to better suit the needs of persons with dementia; and (7) Provide continuous and accessible care provider education. Results from this study indicate there is a need to support health and social care providers to enable a higher quality integrated palliative approach to care for persons with dementia and in the emotional labour of caring for persons with dementia who are dying