PubMed · 15341386
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Tara O'Neill, Claire Lynch, Liz Brewin. It's a different thing.. https://pubmed.ncbi.nlm.nih.gov/15341386/
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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 implementation of care innovations that have been proven effective is not matter-of-course. In this study, we traced facilitating and impeding factors in the implementation of thirteen meeting centres for people with dementia and their carers in five different regions in The Netherlands. To guide the data collection and analyses, a theoretical model was developed that distinguishes different phases of implementation, and factors at the level of characteristics of the innovation and other preconditions. Qualitative methods were used, including interviews with 23 key figures and other written materials gathered. The interview data were double coded and analyzed, using the computer programme NVivo. Several factors proved to play a facilitating role in all phases of implementation, for example: motivated people, financial resources, continuous and varied PR-activities, and cooperation between organizations. Other important facilitating characteristics of the meeting centres were: the surplus value of the integrated support programme as compared to the local support offer, and the fact that several centres were already available as an example for new initiators. The findings were used, among other things, to develop an implementation guide, to facilitate the implementation of meeting centres.