Caregiver Burden in Alzheimer's Disease: Differential Associations in Adult-Child and Spousal Caregivers in the GERAS Observational Study

Abstract

Background/Aims: To examine factors influencing the caregiver burden in adult-child and spousal caregivers of community-dwelling patients with Alzheimer's disease (AD). Methods: Baseline data from the 18-month, prospective, observational GERAS study of 1,497 patients with AD in France, Germany, and the UK were used. Analyses were performed on two groups of caregivers: spouses (n = 985) and adult children (n = 405). General linear models estimated patient and caregiver factors associated with subjective caregiver burden assessed using the Zarit Burden Interview. Results: The caregiver burden increased with AD severity. Adult-child caregivers experienced a higher burden than spousal caregivers despite spending less time caring. Worse patient functional ability and more caregiver distress were independently associated with a greater burden in both adult-child and spousal caregivers. Additional factors were differentially associated with a greater caregiver burden in both groups. In adult-child caregivers these were: living with the patient, patient living in an urban location, and patient with a fall in the past 3 months; in spouses the factors were: caregiver gender (female) and age (younger), and more years of patient education. Conclusion: The perceived burden differed between adult-child and spousal caregivers, and specific patient and caregiver factors were differentially associated with this burden.

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

“…Although caregiver outcomes are not typically included in economic evaluations, a preference-based measure such as the EQ-5D can be used to inform economic evaluations [7, 22]. However, the results of our analysis suggest that the EQ-5D is not particularly effective for capturing the true impact on caregivers of caring for people with AD dementia: the EQ-5D index score had a low sensitivity to change over an 18-month period and was not clearly differentiated by patient AD dementia severity.…”

“…The study design, patient characteristics, and baseline costs and resource-use data have been reported [12]. The present analysis focuses on the primary caregivers; baseline characteristics and perceived burden have been reported previously for the overall caregiver and patient cohorts [6] and by caregiver relationship to the patient (e.g., adult-child, spouse) [7]. …”

“…Caregiver burden has been associated with AD dementia severity: caregivers feel more burdened as AD dementia severity increases [6], although there are some differences between spousal and adult-child caregivers in perceived burden measured using the Zarit Burden Interview (ZBI) [7]. …”

Resource utilisation, costs and clinical outcomes in non-institutionalised patients with Alzheimer’s disease: 18-month UK results from the GERAS observational study

“…Carers should be provided with comprehensive support, including assistance with day-to-day caring, emotional support and regular, planned access to respite to support their own quality of life [4]. This is especially true given previous publications demonstrating an increase in caregiver burden with severity of AD dementia [28, 29]. …”

Comparación de psicopatologías y apoyo prestado a cuidadores de enfermos de Alzheimer por la farmacia comunitaria y las asociaciones de cuidadores

“…Éste parece ser independiente de las características culturales o sociales de la población estudiada y corresponde mayoritariamente a mujeres de mediana edad, de entre 40 y 60 años, familiares de primer grado del paciente (principalmente hijas), con estudios primarios, casadas y que no trabajan fuera del hogar [24][25][26][27][28].…”