Spousal Caregiving for Parkinson's Disease: Life Changing Dynamics

Abstract

Although worldwide estimates of the prevalence of Parkinson's disease (PD) have been difficult to obtain, it is agreed that the frequency of cases is rising with the increase in human life expectancy. Spouses often assume the primary responsibility for individuals with PD and this considerable burden impacts all aspects of the caregivers’ (CG) and their families’ lives. Few have formal training in administering health care; yet they are required by necessity to undertake the CG role. 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. We also conducted in person interviews with 8 pairs of PD and 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. 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 and also made comparisons between the CD and PD groups. Findings revealed increasingly significant physiological and psychiatric issues for both the PD and CG.PD reported greater satisfaction with support systems while CG expressed concern regarding the paucity of support for themselves. The presence of PD creates a multifaceted exponential increase in challenges to Qol for both PD and their CG with the latter receiving little support.

Disclosure of interest

The author has not supplied his/her declaration of competing interest.