Needs and experiences of care-givers for family members dying with Parkinson disease

Elizabeth R. Goy, Julie H. Carter, Linda Ganzini

    Research output: Contribution to journalArticlepeer-review

    44 Scopus citations


    The caregiver burdens and unmet needs of patients with Parkinson disease (PD) in the final months of life are poorly documented. We surveyed 47 family caregivers of PD patients a median of 18 months after death. We measured caregiver preparedness for their role, assistance provided the patient, and types and settings of care received by the patient. Typical caregivers were older female spouses. Though 66% of patients resided in a care facility during the last month, over half received care from hospice, 36% from a home health agency, and 43% by privately paid aide in the months before death. Caregivers rated tasks involving physical effort as most difficult. While most caregivers felt prepared for their role, one-third or more were unprepared for the stress and physical strain encountered. These data suggest that increasing education and assistance with physical tasks may address unmet needs of PD caregivers.

    Original languageEnglish (US)
    Pages (from-to)69-75
    Number of pages7
    JournalJournal of palliative care
    Issue number2
    StatePublished - 2008

    ASJC Scopus subject areas

    • Medicine(all)


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