Non-professional caregiver burden is associated with the severity of patients' cognitive impairment.

Christopher M Black,Baishali M Ambegaonkar,Robert Wood,Rezaul K Khandker,Xiaohan Hu,Eddie Jones,Craig W Ritchie,Stephen D Ginsberg

doi:10.1371/journal.pone.0204110

Christopher M Black, Baishali M Ambegaonkar + Show 6 more

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https://doi.org/10.1371/journal.pone.0204110

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Abstract

Background/ObjectivesTo analyse the relationship between caregiver burden and severity of patients’ cognitive impairment.DesignData were drawn from the cross-sectional 2015/2016 Adelphi Real World Dementia Disease-Specific Programme.SettingThis research was multi-national and studied physicians and their consulting patients with cognitive impairment.Participants1,201 caregivers completed self-assessment forms.MeasurementsValidated instruments of caregiver wellbeing and burden (EQ-5D-3L questionnaire, EQ-VAS, Zarit Burden Interview, and Work Productivity and Activity Impairment questionnaire) and number of caregiver hours were analysed by severity of patients’ cognitive impairment, categorised according to the Mini-Mental State Examination. Data were analysed using Spearman’s rank correlation coefficients and ordinary least squares regression models, to compare outcomes between caregivers of patients with prodromal, mild, moderate, and severe dementia.ResultsThe majority of caregivers were female (69.1%), lived with the patient they cared for (75.8%), and only approximately one third (28.3%) were in part- or full-time employment. There were statistically significant (p<0.001) increases in caregiver time (36.9 versus 108.6 hours per week for prodromal versus severe dementia, respectively) and measures of caregiver burden and health status (EQ-5D-3L, EQ-VAS, and Zarit Burden Interview) and increases in measures of work productivity and activity impairment with increasing severity of patients’ disease.ConclusionThis study of real-world data confirmed an association between increased caregiver burden and severity of patients’ cognitive impairment by analysis of a wide range of validated measures of caregiver burden. These findings suggest that maintaining patients in the earliest stages of their disease for as long as possible may potentially help to protect caregiver wellbeing, although further research is required to confirm this hypothesis.

Highlights

Worldwide, more than 35 million people live with dementia and this is predicted to increase to 115 million by 2050 [1]
There were statistically significant differences between caregivers of patients with moderate versus mild dementia across all outcomes assessed: EQ-5D-3L, EQ visual analogue scale (EQ-VAS) (-3.57; p
With the exception of EQ-5D-3L, differed significantly between caregivers of patients with severe dementia versus caregivers of patients with moderate dementia: EQ-VAS (-5.72; p

Summary

Introduction

More than 35 million people live with dementia and this is predicted to increase to 115 million by 2050 [1]. Dementia has a considerable negative impact on patients’ family members, placing physical, emotional, and financial strains on these non-professional caregivers [6]. In an analysis of data from more than 1500 family caregivers, dementia caregivers (n = 320) spent significantly more hours per week providing care and reported greater impacts in terms of employment complications, strain, mental and physical health problems, time for leisure and family, and family conflict, compared with non-dementia carers [8]. Worldwide dementia costs in 2010 were estimated at ~US$600 billion and in high-income countries 45% of total costs were informal care costs [9]. In the GERAS study, an observational study of costs and resource use in 1497 outpatients with mild to severe AD outpatients in France, Germany, and the UK, informal caregiver costs accounted for up to 60% of total societal costs [10]

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