Caregiving burden,disease-related knowledge,and quality of life among primary caregivers in Alzheimer's disease: A cross-sectional study

Abstract

Background

Alzheimer's disease (AD) is an incurable condition that places primary caregivers in the challenging position of providing long-term care.

Objective

To characterize quality of life (QOL) and caregiving burden among primary caregivers of patients with AD, identify the correlates of these outcomes, and evaluate the relationship between disease-specific knowledge levels and their QOL and burden profiles.

Methods

A cross-sectional survey was conducted with 120 pairs of patients with AD who were hospitalized between April and September 2023 and their primary caregivers. Sociodemographic and clinical information of patients and caregivers was obtained. Caregivers were assessed using the Chinese versions of the Zarit Burden Interview, Dementia Knowledge Assessment Scale, and 12-Item Short Form Health Survey. Correlates of caregivers’ QOL and caregiving burden were analyzed using stepwise multiple linear regression.

Results

Primary caregivers had high caregiving burden, relatively low disease-related knowledge, and impaired QOL. Patients’ age, disease duration, and the frequency of wandering episodes resulting in missing incidents were identified as key potential risk factors for caregivers’ QOL. However, caregivers’ educational level, the absence of disease, and higher levels of disease knowledge were major protective factors. Core predictors of caregiver burden included compromised Physical and Mental Component Summary scores.

Conclusions

Enhancing caregiver education and improving the availability of community-based care resources for families facing AD in remote regions of Southwest China are urgently needed. Creating culturally sensitive and clinically applicable assessment frameworks is also critical to effectively address the impact of traditional cultural values that turn caregiving duties into a moral obligation.