Parkinson’s disease (PD) progression increases responsibility for the individual’s spouse and immediate family members who are likely to assume the role of caregiver (CG). This interpersonal blending of responsibilities as a spouse and family member with the role of CG creates a cyclical relationship that impacts overall quality of life (QoL), well-being, and family dynamic.

We constructed two questionnaires specified for PD (84 items) and their CG (81items). Both were either mailed or emailed to 256 people from a PD association list and we conducted in person interviews with 8 pairs of individuals with PD and their CG. The questionnaires and interviews included a wide range of topics such as health history and change, physiological health, social engagement, support availability, stressors, emotional health, sleep, financial concerns, and overall QoL. Data were analyzed using Chisquare, regression, and T-tests to evaluate the sleep similarities and differences of individuals with PD and CGs.

Fifty-nine participants responded to the questionnaire (PD: 20 males, mean age 73.42; 11 females, mean age 77.73); (CG: 4 males, mean age 85.25; 24 females, mean age 69.13). We analyzed data specific to CG then compared the CG and PD groups. Analyses revealed numerous differences between groups. For example, the PD group expressed greater overall support satisfaction while CG reported a lack of support from family and close friends, 72% of CG reported an increase in stress levels versus 51.6% of those with PD. Both groups reported a decline in QoL with increases in sleep disturbance, health issues, depression, feelings of isolation, fatigue, anger, and tearfulness.

PD creates multifaceted challenges to QoL for both those with PD and their CG. The need for accessible support systems within the caregiving community has grown substantially and contemporary research suggests that few therapeutic methods or treatments have been developed to correct this shortcoming. CG frequently being ignored by medical professionals despite their essential role intensifies challenges to their QoL. New medical policies and protocols need to be implemented to better address the critical role of CGs and the impact PD has on the development and/or exacerbation of psychological and physiological health factors.