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.
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.