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Publication Briefs

Parkinson Disease: Caregiver Needs and Experiences

Family members of patients with Parkinson disease (PD) play an increasingly important role in the care of the patient as the disease progresses, yet experience mounting levels of stress across stages of the disease. Moreover, many of these caregivers are older adult spouses who also may be dealing with their own medical problems. Investigators in this study conducted a survey of 47 family caregivers (17 from the Portland VAMC) an average of 18 months after the death of their family member with Parkinson disease. Investigators measured caregiver preparedness for their role, assistance provided to the patient, and types and settings of care received by the patient.

Findings show that while most caregivers felt prepared for their role, one-third or more were unprepared for the stress and physical strain they encountered. Typical caregivers were older female spouses who rated tasks involving physical effort the most difficult. Although 66% of persons with PD resided in a care facility during their last month of life, more than half received care from hospice, 36% from a home health agency, and 43% by privately paid aides in the final months before death. Authors suggest that increasing aid for, or respite from physically taxing care would likely improve coping and quality of life for spouse caregivers, and by extension the patients themselves at the end of life.

PubMed Logo Goy E, Carter J, and Ganzini L. Needs and Experiences of Caregivers for Family Members Dying with Parkinson Disease. Journal of Palliative Care Summer 2008;24(2):69-75.

This study was partly funded through HSR&D. Dr. Goy is supported by an HSR&D Research Career Development Award; Drs. Goy and Ganzini are part of the Portland VAMC.

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What are HSR Publication Briefs?

HSR requires notification by HSR-funded investigators about all articles accepted for publication. These journal articles are reviewed by HSR and publication briefs or summaries are written for a select number of articles that are then forwarded to VHA Central Office leadership to keep them informed about important findings or information. Articles to be summarized are selected by HSR based on timeliness of the findings, interest of leadership, or potential impact on the organization. Publication briefs are written for only a small number of HSR published articles. Visit the HSR citations database for a complete listing of HSR articles and presentations.

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