Factors associated with long-term impact on informal caregivers during Alzheimer's disease dementia progression: 36-month results from GERAS. (28th February 2020)

• Record Type: Journal Article
• Authors: Reed, Catherine; Belger, Mark; Scott Andrews, J.; Tockhorn-Heidenreich, Antje; Jones, Roy W.; Wimo, Anders; Dodel, Richard; Haro, Josep Maria
• Is Part Of: International psychogeriatrics. Volume 32:Number 2(2020)
• Page Start: 267
• Page End: 277
• Publication Date: 2020-02-28
• Subjects: caregiver burden, -- healthcare research, -- informal care, -- informal care costs, -- longitudinal study; Geriatric psychiatry -- Periodicals; 618.9768905
• DOI: 10.1017/S1041610219000425
• Languages: English
• ISSNs: 1041-6102

Abstract

ABSTRACT: Objective: To identify, in caregivers of patients with Alzheimer's disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden. Design: Prospective longitudinal European observational study: post-hoc analysis. Setting: Clinic. Participants: Community-dwelling patients in France and Germany aged ≥ 55 years ( n = 969) with probable AD and their informal caregivers. Measurements: Mini-Mental State Examination (MMSE), Alzheimer's Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models). Results: Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden. Conclusions: Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.