Parkinson's Disease and Lower Urinary Tract Symptoms: Implications for Spousal Caregivers

Background and Purpose: Lower urinary tract symptoms (LUTS) are common and challenging nonmotor symptoms in Parkinson’s disease (PD). Our previous research¹ revealed the profound impact of LUTS on relationships, activities, and quality of life in men with PD and LUTS. The purpose of the present study² was to explore how spouse caregivers of men with PD experience their partners’ LUTS. The specific aim was to describe the symptoms, bother, impact, and attribution of LUTS and management strategies from the perspective of the spouse caregiver. The Theory of Unpleasant Symptoms and family systems theory guided the study.

Methods: In this qualitative descriptive study, semistructured interviews were conducted with women whose husbands were receiving care at a PD Center in an urban Veterans Affairs medical center. Purposive sampling was used to select caregiver participants for audiotaped interviews. A directed content analysis was performed to code transcribed interviews and field notes. Several strategies were followed to ensure trustworthiness of the findings.

Results: Participants were 15 female spouse caregivers (mean age = 68 years; range = 57-79) of men with PD and LUTS. Identified themes reflected cognitive, affective, and behavioral dimensions of caring for a spouse with LUTS. Participants were knowledgeable about the direct effect of PD on the bladder. Their affective responses included experiencing bother, emotional distress from the impact of LUTS on their lives, and empathy for their husbands. Participants tried many behavioral strategies to manage LUTS but received limited professional assistance for daily LUTS management.

Conclusion: Understanding the caregiver experience around LUTS is a necessary first step in developing interventions that help caregivers manage these symptoms. Patient- and family-centered interventions that provide education, treatment, and support are needed to promote better management of LUTS and reduce burden for the patient and family.