Cultural differences are reflected in variables associated with carer burden in FTD: a comparison study between India and Australia.

Shailaja Mekala,Kammammettu Chandrasekar,Claire M.O.'Connor,John R Hodges,Suvarna Alladi,Michael Hornberger,Safiya Fathima,Olivier Piguet,Eneida Mioshi,Colleen Mckinnon

doi:10.1590/s1980-57642013dn70100016

Abstract

There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background.OBJECTIVEThe present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country.METHODSData of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained.RESULTSOverall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia.CONCLUSIONThis study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

Highlights

Carer burden is a multifaceted and complex construct mediated by a number of variables and their interactions
In frontotemporal dementia (FTD), a recent study has shown that disease severity is the main factor contributing to high levels of reported carer burden.[1]
Our findings revealed that levels of carer burden were similar between India and Australia, despite higher levels of dementia severity and greater number of hours providing direct care in the Indian sample compared to the Australian sample

Summary

Introduction

Carer burden is a multifaceted and complex construct mediated by a number of variables and their interactions. In frontotemporal dementia (FTD), a recent study has shown that disease severity is the main factor contributing to high levels of reported carer burden.[1] Other studies have shown that carer-based variables such as depression of the carer is very relevant.[2] patient-related variables such as concurrent cognitive deficits and age at disease onset have been recently recognised.[3] The question in examining which variables contribute to carer burden in FTD is important given the high level of carer burden in FTD compared to Alzheimer’s disease.[1,4,5]. Most of the studies of burden of care in FTD, have been conducted in Western countries,[1,2,3,6,7,8] with cross-cultural differences virtually unexplored. It is very likely that carers’ needs are likely to reflect the environment that they live in, and the amount of support (emotional, services, cultural) to which they have access to, as well as their perception of what is available to them.[9]

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