An exploration of the burden experienced by spousal caregivers of individuals with Parkinson's disease

Abstract

Although previous research has attempted to identify the needs of caregivers for individuals with Parkinson's disease (PD), most has focused on the demands associated with the physical needs of the patient, and not on "mental burden." This study used the repertory grid method to capture the full range of caregivers' subjective experience, quantify their perceptions, and to acquire information that might be useful in directing remediation attempts. Within this sample, caregivers reported far greater burden from "mental stress" (e.g., worrying about individual's safety) than from "physical stress" (e.g., lifting individual into bed). Specifically, caregivers were primarily concerned about spousal safety, as this requires continuous vigilance and constant worry. Caregivers also reported experiencing "little deaths" as the disease progresses, related to a loss of independence for the couple, and the steady diminishment of social networks. Increasing attention on the mental burden experienced by spousal caregivers promises to increase quality of care, and quality of life for individuals with PD, by improving quality of life for the caregiver.

Stressors identified by caregivers for veterans with Parkinson’s disease

“…The caregiver study results indicated that the quality of the caregiver-veteran relationship was significantly related to stress levels; this finding was also supported by other researchers [19,20] . The duration of caregiving was predictably associated with daily hours spent in caregiving but not with stress levels.…”

“…After a review of validated PD caregiving instruments [1,15,18,20] , the researchers found none that integrated all the required components for this study. The preferred survey was one devised for a mailed caregiver study, contained specific questions unique to this sample of participants, and was simple and short in design so that caregivers would be more likely to complete the questionnaire.…”

Physical therapy and occupational therapy in Parkinson's disease

“…Caregiver interventions include educating the caregiver about the effects of PD, training the caregiver in the specific skills needed to support the patient, provide information about relevant aids and adaptations that may reduce caregiver burden, and empower the caregiver to maintain or reacquire a healthy balance between personal activities and caring [50,103,119]. In a trial about homebased OT, the participating PwP, caregivers and therapists reported the benefits of actively involving the caregiver in the intervention [60].…”

The perspective of caregivers of people with Parkinson's: an integrative review

“…In addition, when there is a marital or family relationship between the caregiver and the individual with PD, both may experience minor social deaths, which can begin in the work environment, with colleagues and friends, and even reach the family context 19 .…”