PubMed · 16705721
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Laurie Lyckholm. 2006-06-01. The wait.. https://doi.org/10.1002/jso.20556
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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 most parkinsonian patients greatly benefit from medical and/or surgical treatment, their clinical management should not be limited to these two interventions. Axial symptoms, freezing, postural instability, speech and swallowing problems may be drug-resistant, and disability may persist in spite of improvement of motor symptoms. A coordinate interdisciplinary approach facilitates the clinical management of the disease. Physiotherapy, occupational therapy and speech therapy may contribute to reduce impairment and improve quality of life; a psychological and social support of patients and caregivers helps them carrying the burden of the disease; counseling through a specialized nurse may give practical solutions to problems like bladder incontinence, symptomatic hypotension or hypersalivation. As sensory cueing may help patients bypassing the disease-specific motor control deficits, it should be included in training programs. Rehabilitatory interventions are part of the standards of care of Parkinson's disease and their efficacy is supported by several neurophysiological and clinical investigations. However, the poor methodological quality of most clinical studies as compared with the standard of pharmacological investigations fails to provide clear-cut evidence in favour of rehabilitation.