July 2012

Document Type


Degree Name



Oregon Health & Science University


Parkinson’s disease (PD), a chronic, progressive neurological disease, affects at least one million Americans. During the course of PD, family members, mainly spouses, provide most of the support and care in their homes. Providing care to a relative with PD has been associated with depression and poor quality of life. Research shows the important link between high levels of preparedness and low levels of role strain. The study was aimed at describing caregiver preparedness in spouse caregivers of persons with PD over time, and identifying the role of transition conditions and nature of PD caregiving factors in predicting preparedness over time. The secondary data analysis examined 251 caregivers over a 10-year period (baseline, Year 2, and Year 10). A Level 1 hierarchical linear model revealed that preparedness varied across spouses at baseline, but there was no significant change in caregiver preparedness over time and no significant variability around the average trajectory. Two hierarchical multiple regressions examined the transition conditions associated with preparedness at baseline and Time 3. At baseline, with minimal care needed, spouse caregivers’ well-being and relationship quality with the patient with PD (mutuality) were significantly associated with preparedness, while at Time 3, when more care and assistance were required, care-related factors (predictability, the number of direct care activities, and help received from relatives) were significantly associated with preparedness. Findings suggest that early on in the caregiving trajectory, clinicians should detect and initiate couple-based interventions in cases of low mutuality to help build and maintain stronger relationships. Over the course of caregiving, practical information on how couples and spouse caregivers can handle an increasingly less predictable care situation should be provided so that PD couples can adapt to, and live with, the disease as a team.




School of Nursing



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