Assisted Living Staff Perspectives on End-Of-Life Care for Residents Living With Dementia: A Qualitative Study

Abstract

Background

Alzheimer’s disease and related dementia (ADRD) affect nearly half of assisted living (AL) residents, the majority of whom have palliative care (PC) needs at the end of life (EOL). AL staff are well positioned to provide PC with appropriate training; however, little is known about their experiences delivering EOL care.

Objective

To explore AL staff perspectives on providing quality PC at the EOL for residents with ADRD.

Methods

This qualitative study analyzed secondary data from 17 staff across six AL communities in southwest Florida who participated in the Palliative Care Education in Assisted Living for Dementia Care Providers (PCEAL-DCP) study (2019-21). As part of the training, staff completed two homework assignments: (1) defining what constitutes a good death for residents with dementia, and (2) identifying one resident and at least one action to address EOL care needs. Responses were analyzed using hybrid deductive-inductive thematic analysis. A priori codes were based on the physical, social, emotional, and spiritual domains of PC.

Results

Twenty-two homework assignments were analyzed. Care planning coordination with family emerged as an overarching theme. Staff described family involvement in all four a priori PC themes physical, social, emotional, and spiritual care, with particularly prominent roles in social and emotional aspects of care.

Conclusion

AL staff emphasized person-centered PC that is responsive to residents’ and families’ needs, underscoring the multidimensional nature of EOL care and the central role of staff-family collaboration in meeting residents’ PC needs at EOL.