Palliative and End-of-Life Care Knowledge, Attitudes, and Representations Among Caregivers of Individuals With Major Neurocognitive Disorders and the General Population: A Cross-Sectional Study.

Abstract

BackgroundCaregivers of individuals with major neurocognitive disorder are often required to participate in decision-making for their loved ones, including the initiation of palliative care and end-of-life care (PEoLC). Yet, it remains unclear whether caregivers are prepared to engage in such decision-making.ObjectivesThis study aims to assess the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding PEoLC practices, and to examine the extent to which sociodemographic variables influenced these outcomes compared to the general population.MethodA community-based cross-sectional questionnaire study was conducted in Quebec, Canada. A non-probability convenience sampling method was used to recruit 572 participants from the general population, who were then divided into two groups according to their experience as caregivers for a person with a neurocognitive disorder until their death.ResultsCaregivers demonstrated a higher level of knowledge, with mean scores of 10.1 versus 8.7 out of 14 (ranges 0-14, P < .01), as well as generally favorable and similar attitudes and representations toward PEoLC compared to the general population. Individuals' interpretations of ethical dilemmas at the end of life were also shaped by their religious beliefs. Results further indicate that 8% of caregivers reported having no experience with palliative care, although they all supported a person with a major neurocognitive disorder until their death.ConclusionThis study reaffirms the central role of family caregivers in end-of-life decision-making, while underscoring the influence of religiosity on their attitudes and representations. Further research is needed to understand how these factors interact in different cultural and legislative contexts, in order to better support caregivers, guide healthcare practice, and inform public policy, ultimately improving care for individuals with major neurocognitive disorders and their families.