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Accepted (AM)Open Access (License Unspecified), Open
Journal article
LEWY BODY DEMENTIA: CAREGIVER BURDEN AND UNMET NEEDS
Alzheimer disease and associated disorders, v 24(2)
01 Jan 2010
PMID: 20505434
Featured in Collection : UN Sustainable Development Goals @ Drexel
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 56y; 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 non-spousal caregivers. Only 29% hired in-home assistance while 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.
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Details
- Title
- LEWY BODY DEMENTIA: CAREGIVER BURDEN AND UNMET NEEDS
- Creators
- James E. Galvin - Washington University in St. LouisJohn E. Duda - University of PennsylvaniaDaniel I. Kaufer - Department of Neurology, Washington University, St Louis, MO PADRECC, Philadelphia VA Medical Center and Department of Neurology, University of Pennsylvania, Philadelphia, PA Department of Neurology, University of North Carolina, Chapel Hill, NC Department of Neurology, Drexel University College of Medicine, Philadelphia, PA Lewy Body Dementia Association, Atlanta, GA Department of Psychology, Pennsylvania State University, University Park, PACarol F. Lippa - Drexel UniversityAngela Taylor - Lewy Body Dementia AssociationSteven H. Zarit - Pennsylvania State University
- Publication Details
- Alzheimer disease and associated disorders, v 24(2)
- Publisher
- Lippincott
- Resource Type
- Journal article
- Language
- English
- Web of Science ID
- WOS:000278537700011
- Scopus ID
- 2-s2.0-77953275669
- Other Identifier
- 991019312452504721
UN Sustainable Development Goals (SDGs)
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InCites Highlights
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Clinical Neurology
- Pathology