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Dementia & Neuropsychologia

Print version ISSN 1980-5764

Dement. neuropsychol. vol.7 no.1 São Paulo Jan./Mar. 2013 


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

Diferenças culturais se refletem nas variáveis associadas à sobrecarga do cuidador em DFT: um estudo comparativo entre Índia e Austrália

Shailaja Mekala1 

Suvarna Alladi1 

Kammammettu Chandrasekar2 

Safiya Fathima1 

Claire M.O.'Connor3 

Colleen McKinnon4 

Michael Hornberger5 

Olivier Piguet5 

John R. Hodges5 

Eneida Mioshi5 

1Nizam's Institute of Medical Sciences, Hyderabad, India.

2Asha Psychiatric Hospital, Hyderabad, India.

3Neuroscience Research Australia, Sydney, Australia.

4Western Sydney Local Health District, Sydney, Australia.

5Neuroscience Research Australia, Sydney, Australia. School of Medical Sciences, University of New South Wales, Sydney, Australia. Ms McKinnon was based at the Prince of Wales Hospital, South Eastern Sydney Illawarra Health at the time of the study. This study was conducted in two sites, Sydney (Australia) and Hyderabad (India).


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.


The 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.


Data 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.


Overall, 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.


This 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.

Key words: carer burden; caregiver burden; carer depression; carer anxiety; carer stress; dementia severity


Há uma grande necessidade de se entender as variáveis por trás da sobrecarga do cuidador, especialmente em DFT. A sobrecarga é um construto complexo e os fatores provavelmente estão ligados ao tipo de demência, características do cuidador e origens culturais.


O presente estudo objetivou comparar perfis e gravidade da sobrecarga, depressão, ansiedade e estresse nos cuidadores dos pacientes com DFT da Índia em comparação aos da Austrália; investigar que variáveis do cuidador estão associadas à sobrecarga em cada país.


Dados de 138 participantes (69 pares cuidadores-pacientes) da Índia e Austrália (Índia, n=31) e Austrália (n=38). A sobrecarga do cuidador foi avaliada através da versão curta do Inventário de Sobrecarga de Zarit; depressão, ansiedade e estresse do cuidador através com o Depression, Anxiety and Stress-21. A gravidade da demência foi determinada com a Frontotemporal Dementia Rating Scale (FTD-FRS), e uma gama de variáveis demográficas do cuidador e do paciente foram também obtidas.


De modo geral os níveis de sobrecarga do cuidador não foram significativamente diferentes entre Índia e Austrália, apesar do maior tempo despendido no cuidado e gravidade da demência na Índia. As variáveis associadas à sobrecarga, todavia, diferiram entre os países, com depressão do cuidador, ansiedade e estresse fortemente associados com sobrecarga na Índia. Em contraste, depressão, estresse e gravidade da demência foram associados à sobrecarga na Austrália.


Este estudo demonstrou que variáveis associadas à sobrecarga do cuidador na DFT difere entre culturas. Consequentemente, aspectos culturais devem ser levados em consideração quando se planeja intervenções para redução da sobrecarga. Este estudo sugere que programas direcionados às habilidades e meios de se lidar com a situação dos cuidadores são provavelmente mais eficazes do que aqueles só aos sintomas do paciente.

Palavras-chave: sobrecarga do cuidador; sobrecarga de cuidados; depressão; estresse; gravidade da demência

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Received: December 18, 2012; Accepted: February 18, 2013

Eneida Mioshi. Neuroscience Research Australia, Barker St - PO Box 1165 - Randwick, NSW 2031 - Sydney - Australia. E-mail:

Conflicts of interest and source of funding: EM is a recipient of a National Health Medical Research Council of Australia Early Career Fellowship (APP1016399). MH is a recipient of an Australian Research Council Research Fellowship (DP110104202). OP is supported by an NHMRC Clinical Career Development Fellowship (APP1022684). We are very grateful for the support of all patients and carers involved in this study, in India and Australia. For the remaining authors none were declared.

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