The impact of incontinence management on informal caregivers’ quality of life

Abstract

Background: The presence of incontinence symptoms might affect the quality of life (QoL) of those providing informal care to people suffering from them, causing social isolation, financial problems, psychological and physical exhaustion. Aims: This study aimed at assessing whether urinary and/or fecal incontinence in people aged 60 and over affects the level of burden in their informal caregivers. Methods: QoL was assessed amongst 304 informal caregivers of older people suffering from urinary and/or fecal incontinence, and compared to that reported by 305 caregivers of non-incontinent older relatives, all living in Italy. All participants were administered a questionnaire focused on: characteristics and conditions of the cared for; details of the care activity; emotions experienced by caregivers; attitudes of caregivers; reasons for providing care; availability of information and support; demographics. Results: Findings show that, when no incontinence was reported, the longer was the caregiving situation, the better was the caregivers’ QoL, which was instead negatively affected by the lack of a support network. As for caregivers’ feelings, neither positive nor negative emotions influenced their QoL in a significant way. In terms of caregiver’s role, those who felt overwhelmed or loaded with responsibility reported a lower QoL, while the opposite was found among those who felt rewarded and supported, even when incontinence—of any kind—was present. Conclusions: The management of incontinence does have a negative impact on caregivers’ QoL, but subjective factors might play a mitigating role on such an impact.