Health and Social Service Access Among Family Caregivers of People with Parkinson’s Disease

Yvonne Olsson, Lena Clarén, Anette Alvariza, Kristofer Årestedt, Peter Hagell

Being a family caregiver for a person with Parkinson's disease (PD) can negatively impact health and wellbeing, but it appears less clear to what extent caregivers' health/social service needs are met. We explored the extent to which PD family caregivers experience sufficient access to health/social services, as compared to age-matched controls; and the associations between this and demographic and health-related variables. A cross-sectional survey of 66 PD family caregivers and 79 age-matched control subjects including the SF-36 health survey, the Nottingham Health Profile Sleep section (NHP-Sleep), and questions regarding contacts with various health/social related services and whether these were perceived as sufficient. People reporting insufficient access (n = 29) were more often PD family caregivers than controls (83% vs. 37%), did more often have a disease of their own (79% vs. 46%), and reported poorer health according to the SF-36 and the NHP-Sleep. Being a PD family caregiver (OR, 8.90), reporting more pain (OR, 1.02) and having an own disease (OR, 3.46) were independently associated with insufficient health/social service access. Our results imply that those in greatest need for health/social services (i.e., those with poorer health, an own disease, and who are PD family caregivers) are those whose health/social service needs are least met. Larger studies are needed for firmer conclusions and regarding how unmet health/social service needs impacts caregiver health and wellbeing. Health/social service providers should not only focus on patients but also consider their family members' needs.