PubMed · 15253474
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Jerome W Freeman. 2004. In another time.. https://pubmed.ncbi.nlm.nih.gov/15253474/
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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).
Counseling of caregivers is an essential component of the management of patients with dementia. According to the empirical research in this field, peer-led self-help groups have the potential to improve subjective outcomes including emotional support, social contact, and control over one's life and thus may facilitate caregiving and reduce psychological burdens. Self-help groups have not been shown, however, to modify objective outcomes such as the time spent for care or the frequency of nursing home admissions. The outcomes of counseling programmes led by professionals depend on the focus of intervention and may include benefits in psychological and psychosomatic symptoms, coping with stress, and managing behavioural disturbances. Studies in the U.S., Australia, and Finland have demonstrated that multimodal counseling programmes led by professionals significantly reduce the number of nursing home admissions and therefore may have considerable importance for health economics.
The identification of factors that might affect the relationship between patients' and carers' psychological distress has received insufficient attention to date. A meta-analysis was conducted with 21 independent samples of cancer patients and their carers, to quantify the relationship and difference between respective measures of psychological distress. Correlation coefficients and standard differences were extracted from 21 studies that met pre-defined inclusion criteria. Random effects models were used. Variables that modified this relationship were examined with potential causes of heterogeneity explored. Analysis confirmed the positive association between patient and carer psychological distress (r = 0.35, P<0.0001), and indicated that patients and carers did not experience significantly more or less psychological distress than one another (P = 0.64). Subgroup analysis was performed to explore potential sources of heterogeneity, and initial findings indicated a relationship between time since diagnosis and the strength of correlation between patient and carer psychological distress. The meta-analysis was limited by the large clinical and methodological variability between studies, and further systematic prospective research is required. This preliminary evidence suggests that early intervention with the patient and their carer could prevent later development of psychological distress in both members.