Abstract
Background and ObjectivesDementia caregiving has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support. Little is known about the experience of caregiving in Dementia with Lewy Bodies (DLB). The present study examines differences in the caregiving experience of spouse versus adult child caregivers of individuals with DLB.Research Design and MethodsIn this cross-sectional analytic study of spouses (n = 255) and adult children (n = 160) caregivers of individuals with DLB, participants completed an online survey of burden, grief, depression, well-being, quality of life, and social support.ResultsAdult child caregivers were more likely to care for women (p < .001) and see the care recipient less often (p < .001) than spouses. Adult child caregivers reported lower quality of life (p < .001) and more caregiver burden (p < .009), but also greater social support (p < .001) than spouses. Between group analyses of caregiver type by disease severity demonstrated that spousal caregivers experience greater grief with advancing disease (p = .005), while adult child caregivers increase social support with advancing disease (p < .001).Discussion and ImplicationsSpouses and adult children experience DLB caregiving differently. This was explained by the younger age of the adult child caregiver, frequency of contact with the care recipient, and differences in the care recipient’s characteristics, frequency of neuropsychiatric symptoms, and disease severity. DLB caregiver support for this population should target psychoeducation for complicated neuropsychiatric symptoms in the care recipient. Screening all DLB caregivers for burden, grief, and depression is suggested to identify those that may benefit most from intervention. Spouses specifically may benefit from interventions that target increasing social support, while adult child caregivers may benefit from interventions aimed at mitigating burden and improving quality of life.
Highlights
Background and ObjectivesDementia caregiving has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support
Caregiver age was strongly correlated with caregiver quality of life (p < .001) and well-being (p = .002), and inversely correlated with caregiver depression (p = .005) and caregiver burden (p < .001)
We hypothesized that spouse and adult child caregivers would experience caregiving for someone with Dementia with Lewy Bodies (DLB) differently, and that score profiles would reveal experiential differences that could guide clinicians to tailor their support for DLB caregivers
Summary
Dementia caregiving has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support. The present study examines differences in the caregiving experience of spouse versus adult child caregivers of individuals with DLB. Discussion and Implications: Spouses and adult children experience DLB caregiving differently This was explained by the younger age of the adult child caregiver, frequency of contact with the care recipient, and differences in the care recipient’s characteristics, frequency of neuropsychiatric symptoms, and disease severity. Caregiving for people with dementia has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support (Anderson et al, 2013; Etters, Goodall, & Harrison, 2008; Pinquart & Sörensen, 2011). There are relatively few studies that examine the experience of caregivers of DLB
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