The Social Construction of Palliative Care for Individuals With Dementia: Implications for Social and Healthcare Assistants and Helpers Working in Nursing Homes and Home Care

Background: Social, organizational, and cultural factors often shape the concept of palliative care. These factors can significantly impact how frontline support workers in Denmark—specifically social and healthcare assistants and helpers—perceive and provide palliative care in nursing homes and home care settings for individuals with dementia. This study examines how these perceptions affect their practices when caring for individuals with dementia in nursing homes and home care.

Methods: From September 2023 to December 2023, data were gathered from eight focus group interviews with 40 social and healthcare assistants and helpers across three municipalities. Transcribed interviews were analyzed in NVivo, employing an abductive approach that combined Braun and Clarke’s thematic analysis with Potter’s discourse analysis to explore how language constructs meaning within these categorizations.

Findings: Thematic analysis identified three themes: (1) the meaning and context of palliative care, (2) institutional factors influencing palliative care practice, and (3) emotional and relational aspects of palliative care. Findings indicate that many social and healthcare assistants and helpers primarily associate palliative care with end-of-life care rather than recognizing its relevance throughout the dementia trajectory (Theme 1). This narrow understanding limits their engagement in early-stage palliative approaches, such as symptom management, emotional support, and advanced care planning. Institutional constraints, such as time pressure and unclear guidelines (Theme 2), further restrict opportunities to integrate palliative care into dementia care proactively. Additionally, the emotional and relational challenges of caregiving (Theme 3) contribute to uncertainties in initiating palliative care discussions at earlier stages of dementia. As a result, this study highlights a prevalent misconception among social and healthcare assistants and helpers, who often view palliative care as limited to end-of-life care, leading to missed opportunities for holistic, proactive dementia care.

Conclusion: By broadening the understanding of palliative care to include ongoing symptom management, emotional support, and advance care planning while addressing the emotional and relational aspects of providing care, healthcare assistants and helpers can better meet the comprehensive needs of individuals with dementia.