Empowerment among primary caregivers of persons with Alzheimer’s disease: associations between disease perception and caregiving partnership

TL;DR

This study explores how well-informed and supported caregivers of Alzheimer's patients are in China, and how their knowledge and partnership in care affect their empowerment.

Contribution

The study identifies factors influencing empowerment of caregivers and proposes targeted interventions to improve their knowledge and support systems.

Findings

Primary caregivers showed moderate AD knowledge and caregiving partnership levels.

Empowerment was positively correlated with disease knowledge and caregiving partnership scores.

Factors like education, caregiving stress, and social support significantly impact empowerment.

Abstract

Amid rapid global population aging, China currently bears the world’s largest dementia burden. Alzheimer’s disease (AD), characterized by progressive cognitive decline, a protracted disease course, and multifaceted care needs, imposes substantial demands on primary caregivers. These caregivers shoulder critical dual responsibilities: they not only provide long-term care during the advanced stages of the disease but also actively monitor disease progression and clinical outcomes. As essential partners in AD patient care, the level of empowerment among primary caregivers is a key determinant of care quality, patient quality of life, and the sustainability of the healthcare system.

Guided by the Health Empowerment Theoretical Framework, this study aims to comprehensively assess the empowerment levels of primary caregivers of AD patients and to determine their relationships with disease knowledge and caregiving partnerships.

A cross-sectional survey was conducted from May to August 2024 using a convenience sampling method. The study involved 417 primary caregivers of AD, recruited from tertiary hospitals in Changsha, Hunan Province, China. Data collection involved the following instruments: a demographic questionnaire, the Alzheimer’s Disease Knowledge Scale (ADKS), the Primary Caregiver Partnership Scale (PCPS), and the Empowerment Scale for Family Caregivers of Dementia Patients (EFCD). Data were assessed using SPSS 27.0 software to identify the current status and influencing factors of caregiver empowerment, as well as examine the correlations between empowerment, disease perception, and caregiving partnerships.

Results showed an ADKS score of 15.16±2.99, a PCPS score of 29.88±5.12, and an EFCD score of AD caregivers of 26.88 ±1.65. Pearson’s correlation analysis revealed a positive association between the EFCD score and the ADKS and PCPS scores among primary caregivers of AD (P < 0.05). Multiple linear regression analysis revealed that several factors significantly impacted caregiving empowerment. These factors included gender of the primary caregiver, educational level, presence of co-caregivers, perceived caregiving stress, receipt of AD-related education, scores on the PCPS and ADKS, as well as the age and disease duration of the patient (P < 0.05).

The level of AD knowledge and caregiving partnership among primary caregivers were moderate. Their care empowerment score was 26.88±1.65, which, on a 0–48 scale, corresponds to a moderately high level. Therefore, future research should focus on the development of targeted interventions based on current AD knowledge of caregivers. Systematic health education and training programs can be implemented to improve disease-related knowledge, along with effective integration of social resources, optimization of collaborative support networks, and the establishment of effective primary caregiving models. These multidimensional strategies are essential for the sustainable improvement of empowerment levels among primary caregivers. Keywords Alzheimer’s disease; Primary caregiver; Caregiving empowerment; Caregiving partnership; Alzheimer’s Disease Knowledge