PubMed · 8809012
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M S Mittelman, D Gallagher-Thompson. 1996. Valuing intervention research.. https://doi.org/10.1093/geronb%2F51b.5.s268
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BackgroundDementia with Lewy bodies (DLB) is a common degenerative dementia, but no studies investigate bereaved caregiver experiences.ObjectiveTo investigate the experiences of caregivers three months after the death of persons with DLB using a mixed-methods approach.MethodsDyads of individuals with moderate-advanced DLB and their primary informal caregivers were followed prospectively every 6 months until the person with DLB died. Caregivers completed a study visit with questionnaires and a semi-structured interview ∼3 months later. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of post-death measures with pre-death patient and caregiver variables. Thematic analysis was used to analyze the interviews.ResultsSeventy-three caregivers completed visits (mean 3.5 months post-death). Most of the caregivers were women (82.2%) and spouses (76.7%) or adult children (17.8%). Over 40% had scores indicating risk for clinical depression. Post-death caregiver experiences (depression, quality of life, grief, resilience) correlated with pre-death caregiver experiences. Post-death experiences did not associate with patient characteristics, disease-related symptoms, or healthcare services used in the last 6 months of life. Trajectories for caregiver measures from pre- to post-death visits varied widely. Interview themes included grief and sadness, anger, guilt and regret, relief, appreciation/gratitude, and adjusting to a new normal.ConclusionsThe finding that pre-death caregiving experiences have the strongest association with post-death experiences emphasizes the critical importance of accessible and evidence-based caregiver support before and after the death of a person with DLB. Research is needed to develop interventions for current and bereaved caregivers of individuals with DLB.Trial registration informationNCT04829656 (submitted 2021-03-22).
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Although some clinicians are extraordinarily sensitive to the legitimate roles of patients' families in medical crises, a persistent tendency to equate families with trouble is evident in both the literature and the practice of medicine. Some negative presumptions about families derive from western medicine's almost exclusive focus on the individual patient in codes of ethics, training, and practice. Modern bioethics has reinforced this individualistic approach. Physicians' primary responsibilities are unequivocally to their patients, but a complete understanding of the patient's personhood must include consideration of the significant persons who help define the patient's core identity. One source of tension between professionals and families lies in differing perceptions of the roles that family members should play and how they should play them. Members of a family may act as advocates, provide or manage care, serve as trusted companions on the journey through illness and death, and make decisions on behalf of an incompetent patient. Each role presents potential conflicts. Other sources of conflict include disagreement within a family; challenges to physician authority; fear of litigation; and differing religious, ethnic, or cultural traditions. An ethic of accommodation emphasizes the need to negotiate care plans that do not compromise patients' basic interests but that recognize the capacities and limitations of family members. Family caregivers want understandable and timely information, better training, compassionate recognition of their anxiety, guidance in defining their roles and responsibilities, and support for the setting of fair limits on their sacrifices. Health care professionals can better meet these needs through education and skills acquisition, the establishment of partnerships with families, and regular dialogue and communication.