Caregiver-identified needs and barriers to care in Parkinson's disease

Perceptions of service needs and barriers to care among caregivers of individuals with Parkinson's disease have not been well explored. The purpose of this study was to assess caregiver perceptions of their own and patients' medical and supportive service needs. An online and paper survey was disseminated to a sample of caregivers (n = 66) of individuals with Parkinson's disease. Although caregivers reported positive quality of life and adjustment to caregiving, nearly half of the sample endorsed feeling stressed about caregiving. Caregivers reported that services for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies were most needed. Reported barriers to patients accessing care included limited service availability and a lack of insurance coverage for services. These findings suggest a need to improve access to services for patients and increased efforts to promote caregiver wellness at movement disorder specialty clinics.