Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022

Author:

Aamodt Whitley W.12ORCID,Kluger Benzi M.3,Mirham Miray4,Job Anna5,Lettenberger Samantha E.6,Mosley Philip E.7,Seshadri Sandhya3

Affiliation:

1. Department of Neurology, University of Pennsylvania, Philadelphia, PA, USA

2. Translational Center of Excellence for Neuroepidemiology and Neurology Outcomes Research, University of Pennsylvania, Philadelphia, PA, USA

3. Department of Neurology, University of Rochester, Rochester, NY, USA

4. School of Medicine, University of Rochester, Rochester, NY, USA

5. University of Rochester, Rochester, NY, USA

6. Center for Health & Technology, University of Rochester, Rochester, NY, USA

7. School of Medicine, University of Queensland, Herston, QLD, Australia

Abstract

Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson disease (PD) can amplify a patient’s needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD. We also describe the impact of caregiver stress and burden on caregivers based on qualitative research studies and review recent interventions to mitigate burden. By providing clinical updates for practitioners, this review is designed to improve recognition of caregiver burden in the post-pandemic era and foster the development of targeted interventions to reduce caregiver burden in PD.

Funder

National Institute on Aging

American Academy of Neurology

Publisher

SAGE Publications

Subject

Psychiatry and Mental health,Geriatrics and Gerontology,Neurology (clinical)

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