title: Lewy body dementia: caregiver burden and unmet needs.
abstract: Lewy body dementia (LBD) is a common cause of dementia but to date, little is known about caregiver burden. The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers (mean age 56 y; 88% women). The most common initial symptoms were cognitive (48%), motor (39%), or both (13%). Caregivers expressed concerns about fear of future (77%), feeling stressed (54%), loss of social life (52%), and uncertainty about what to do next (50%). Caregivers reported moderate-to-severe burden; 80% felt the people around them did not understand their burden and 54% reported feelings of isolation with spousal caregivers reporting more burden than nonspousal caregivers. Only 29% hired in-home assistance, whereas less than 40% used respite or adult day care, geriatric case managers, or attended a support group meeting. Lack of service utilization occurred despite two-thirds of caregivers reporting medical crises requiring emergency services, psychiatric care, or law enforcement. Caregivers reported preferences for web-based information, directories of LBD expert providers, information on LBD research, and location of local support groups. These findings highlight significant unmet needs for LBD caregivers and provide targets for intervention to reduce caregiver burden. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers.
authors.affiliation: Department of Neurology, Washington University, St Louis, MO, USA. galvinj@neuro.wustl.edu
authors.forename: James E
authors.initials: JE
authors.lastname: Galvin
authors.forename: John E
authors.initials: JE
authors.lastname: Duda
authors.forename: Daniel I
authors.initials: DI
authors.lastname: Kaufer
authors.forename: Carol F
authors.initials: CF
authors.lastname: Lippa
authors.forename: Angela
authors.initials: A
authors.lastname: Taylor
authors.forename: Steven H
authors.initials: SH
authors.lastname: Zarit
mesh_terms: D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D020961:Lewy Body Disease; D008297:Male; D008875:Middle Aged; D012944:Social Support