The enduring self: personhood, autonomy and compassion in the context of community-based dementia daycare centers

Background: The aim of this paper is to explore the concepts of personhood and compassion, as perceived by staff caring for people with dementia (PwD) in community-based dementia daycare. Autonomy in the Western culture is closely related to concepts of personhood and form the cornerstone of person centered care. Methods: Participants in this study were recruited from 100 multi-disciplinary professional staff members caring for 400 PwD, within the nonprofit day care centers of MELABEV. Fifty-two staff members agreed to participate in a face-to-face semistructured individual interview exploring staff attitudes and beliefs relating to death and grieving in the daycare center. The words autonomy, personhood and compassion were not used in any form in the semistructured questions. The responses to the open ended questions, were recorded verbatim and analyzed by a gerontologist, medical anthropologist, and a physician. This paper presents a Constructivist Grounded Theory analysis of the responses. Results: From our analysis we identified three different constructs of personhood: sociologic, individual and biologic. These constructs were drawn from text and words and examples provided by the staff. Our analysis supports the notion that personhood is an evolving and non-constant construct in dementia care during the “ongoing funeral” trajectory of dementia. The staff’s belief in the autonomy of PwD and their strong efforts to maintain person-centered care were documented. Our analysis also showed that staff members beliefs of autonomy and personhood are related to their capacity and desire to provide compassionate care despite their ambivalence as to what is the best way to provide this care. Conclusions: We believe that our results support several research hypotheses for further investigation and point to possible teaching and educational methods and interventions for providing compassionate personcentered care in dementia day care. We suggest that our, Sustained Personhood Model for Dementia Care is intimately related to autonomy, a fundamental human right for all persons, including those with advanced dementia. The integration of the concepts of autonomy and personhood can be taught and enhanced within the concept of compassionate care.