Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study

Abstract

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one’s own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

Family Caregiver Comorbidities in Lewy Body Dementia Versus Alzheimer Disease and Associated Disorders

“…The pathognomonic cognitive fluctuations and visual hallucinations of LBD, paranoia, delusions, and physical and sexual aggression may individually and synergistically strain the caregiving relationship, worsen social isolation, precipitate or exacerbate changes in caregivers' coping strategies and mental health, and directly cause caregiver injury. 2,[26][27][28][29][30] These unique aspects of LBD-distinct from those of ADAD-may explain the higher prevalence of depression and inform future investigations and interventions.…”

Family Caregiving across the Lifespan and Conditions: Special Issue on Family Caregiving

“…Hetland et al (2021) provide a clinically useful description of family caregiver preferences and contributions related to patient care in the intensive care unit. The unique needs and concerns of Lewy Body Disease family caregivers are presented by Stacy et al (2021). Several articles regarding dementia family caregiving focus on subjective and objective stress in African-American dementia family caregivers (Cothran et al, 2021), behavioral coding to understand communication breakdown (Coleman et al, 2021), cognitive performance and sleep (Brewster et al, 2021), and experiences of dementia family caregivers during the COVID-19 pandemic (Harris & Titler, 2021).…”