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

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

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.

Objective:

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.

Methods:

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.

Results:

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.

Conclusion:

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

RESUMO

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.

Objetivo:

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.

Métodos:

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.

Resultados:

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.

Conclusão:

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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REFERENCES

Mioshi E, Foxe D, Leslie F, et al. The Impact of Dementia Severity on Caregiver Burden in Frontotemporal Dementia and Alzheimer Disease. Alzheimer Dis Assoc Disord 2013;27:68-73.
Mioshi E, Bristow M, Cook R, Hodges JR. Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord 2009;27:76-81.
Miller LA, et al. Identifying cognitive and demographic variables that contribute to carer burden in dementia.. Dement Geriatr Cogn Disord (in press).
Riedijk S, Duivenvoorden H, Rosso S, Van Swieten J, Niermeijer M, Tibben A. Frontotemporal dementia: change of familial caregiver burden and partner relation in a Dutch cohort of 63 patients. Dement Geriatr Cogn Disord2008;26:398-406.
Riedijk SR, De Vugt ME, Duivenvoorden HJ, et al. Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord2006;22:405-412.
Boutoleau-Bretonnière C, Vercelletto M, Volteau C, Renou P, Lamy E. Zarit burden inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dement Geriatr Cogn Disord2008; 25:272-277.
de Vugt ME, Riedijk SR, Aalten P, Tibben A, van Swieten JC, Verhey FR. Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer's disease and frontotemporal dementia. Dement Geriatr Cogn Disord2006;22:35-41.
Mourik JC, Rosso SM, Niermeijer MF, Duivenvoorden HJ, Van Swieten JC, Tibben A. Frontotemporal dementia: behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord2004;18:299-306.
Nicolaou PLE, Egan SJ, Gasson N, Kane RT. Identifying needs, burden and distress of carers of people with Frontotemporal dementia compared to Alzheimer's disease. Dementia 2010;9:215-235.
Chandra V. Behavioral and psychological signs and symptoms of dementia: implications for research and treatment. Cross-cultural perspectives: India. Int Psychogeriatr 1996;8(Suppl 3):479-481; discussion 491-2.
Das SK, Pal S, Ghosal MK.: Dementia Indian scenario. Neurol India 2012;60:618-624.
Dias A, Samuel R, Patel V, Prince M, Parameshwaran R, Krishnamoorthy ES. The impact associated with caring for a person with dementia: a report from the 10/66 DementiaResearch Group's Indian network. Int J Geriatr Psychiatry 2004;19:182-184.
Shaji KS, Smitha K, Lal KP, Prince MJ. Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 DementiaResearch Network. Int J Geriatr Psychiatry2003;18:1-6.
Prince M, Brodaty H, Uwakwe R, et al. Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 DementiaResearch Group population-based survey. Int J Geriatr Psychiatry2012;27:670-682.
Saldanha D, Mani MR, Srivastava K, Goyal S, Bhattacharya D. An epidemiological study of dementia under the aegis of mental health program, Maharashtra, Pune chapter. Indian J Psychiatry 2010;52:131-139.
Pattanayak RD, Jena R, Tripathi M, Khandelwal SK. Assessment of burden in caregivers of Alzheimer's disease from India. Asian J Psychiatr 2010;3:112-116.
Neary D, Snowden JS, Gustafson L, et al. Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology 1998;51: 1546-1554.
Rascovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain 2011;134:2456-2477.
Zarit SH, Anthony CR, Boutselis M. Interventions with care givers of dementia patients: comparison of two approaches. Psychol Aging 1987; 2:225-232.
Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther 1995; 33:335-343.
Henry JD, Crawford JR. The short-form version of the Depression Anxiety Stress Scales (DASS-21): construct validity and normative data in a large non-clinical sample. Br J Clin Psychol 2005;44:227-239.
Mioshi E, Hsieh S, Savage S, Hornberger M, Hodges JR. Clinical staging and disease progression in frontotemporal dementia. Neurology2010;74:1591-1597.
Patel V, Prince M. Ageing and mental health in a developing country: who cares? Qualitative studies from Goa, India. Psychol Med 2001; 31:29-38.
Kirmayer LJ, Young A. Culture and somatization: clinical, epidemiological, and ethnographic perspectives. Psychosom Med 1998;60: 420-430.
Prince M, 10/66 DementiaResearch Group. Care arrangements for people with dementia in developing countries. Int J Geriatr Psychiatry2004;19:170-177.
Sowmini CV, De Vries R. A cross cultural review of the ethical issues in dementia care in Kerala, India and The Netherlands. Int J Geriatr Psychiatry2009;24:329-334.
Kim H, Chang M, Rose K, Kim S. Predictors of caregiver burden in caregivers of individuals with dementia. J Adv Nurs 2012;68:846-855.

Publication Dates

Publication in this collection
Jan-Mar 2013

History

Received
18 Dec 2012
Accepted
18 Feb 2013

This is an open-access article distributed under the terms of the Creative Commons Attribution License

[1] Mioshi E, Foxe D, Leslie F, et al. The Impact of Dementia Severity on Caregiver Burden in Frontotemporal Dementia and Alzheimer Disease. Alzheimer Dis Assoc Disord 2013;27:68-73.

[2] Mioshi E, Bristow M, Cook R, Hodges JR. Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord 2009;27:76-81.

[3] Miller LA, et al. Identifying cognitive and demographic variables that contribute to carer burden in dementia.. Dement Geriatr Cogn Disord (in press).

[4] Riedijk S, Duivenvoorden H, Rosso S, Van Swieten J, Niermeijer M, Tibben A. Frontotemporal dementia: change of familial caregiver burden and partner relation in a Dutch cohort of 63 patients. Dement Geriatr Cogn Disord2008;26:398-406.

[5] Riedijk SR, De Vugt ME, Duivenvoorden HJ, et al. Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord2006;22:405-412.

[6] Boutoleau-Bretonnière C, Vercelletto M, Volteau C, Renou P, Lamy E. Zarit burden inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dement Geriatr Cogn Disord2008; 25:272-277.

[7] de Vugt ME, Riedijk SR, Aalten P, Tibben A, van Swieten JC, Verhey FR. Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer's disease and frontotemporal dementia. Dement Geriatr Cogn Disord2006;22:35-41.

[8] Mourik JC, Rosso SM, Niermeijer MF, Duivenvoorden HJ, Van Swieten JC, Tibben A. Frontotemporal dementia: behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord2004;18:299-306.

[9] Nicolaou PLE, Egan SJ, Gasson N, Kane RT. Identifying needs, burden and distress of carers of people with Frontotemporal dementia compared to Alzheimer's disease. Dementia 2010;9:215-235.

[10] Chandra V. Behavioral and psychological signs and symptoms of dementia: implications for research and treatment. Cross-cultural perspectives: India. Int Psychogeriatr 1996;8(Suppl 3):479-481; discussion 491-2.

[11] Das SK, Pal S, Ghosal MK.: Dementia Indian scenario. Neurol India 2012;60:618-624.

[12] Dias A, Samuel R, Patel V, Prince M, Parameshwaran R, Krishnamoorthy ES. The impact associated with caring for a person with dementia: a report from the 10/66 DementiaResearch Group's Indian network. Int J Geriatr Psychiatry 2004;19:182-184.

[13] Shaji KS, Smitha K, Lal KP, Prince MJ. Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 DementiaResearch Network. Int J Geriatr Psychiatry2003;18:1-6.

[14] Prince M, Brodaty H, Uwakwe R, et al. Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 DementiaResearch Group population-based survey. Int J Geriatr Psychiatry2012;27:670-682.

[15] Saldanha D, Mani MR, Srivastava K, Goyal S, Bhattacharya D. An epidemiological study of dementia under the aegis of mental health program, Maharashtra, Pune chapter. Indian J Psychiatry 2010;52:131-139.

[16] Pattanayak RD, Jena R, Tripathi M, Khandelwal SK. Assessment of burden in caregivers of Alzheimer's disease from India. Asian J Psychiatr 2010;3:112-116.

[17] Neary D, Snowden JS, Gustafson L, et al. Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology 1998;51: 1546-1554.

[18] Rascovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain 2011;134:2456-2477.

[19] Zarit SH, Anthony CR, Boutselis M. Interventions with care givers of dementia patients: comparison of two approaches. Psychol Aging 1987; 2:225-232.

[20] Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther 1995; 33:335-343.

[21] Henry JD, Crawford JR. The short-form version of the Depression Anxiety Stress Scales (DASS-21): construct validity and normative data in a large non-clinical sample. Br J Clin Psychol 2005;44:227-239.

[22] Mioshi E, Hsieh S, Savage S, Hornberger M, Hodges JR. Clinical staging and disease progression in frontotemporal dementia. Neurology2010;74:1591-1597.

[23] Patel V, Prince M. Ageing and mental health in a developing country: who cares? Qualitative studies from Goa, India. Psychol Med 2001; 31:29-38.

[24] Kirmayer LJ, Young A. Culture and somatization: clinical, epidemiological, and ethnographic perspectives. Psychosom Med 1998;60: 420-430.

[25] Prince M, 10/66 DementiaResearch Group. Care arrangements for people with dementia in developing countries. Int J Geriatr Psychiatry2004;19:170-177.

[26] Sowmini CV, De Vries R. A cross cultural review of the ethical issues in dementia care in Kerala, India and The Netherlands. Int J Geriatr Psychiatry2009;24:329-334.

[27] Kim H, Chang M, Rose K, Kim S. Predictors of caregiver burden in caregivers of individuals with dementia. J Adv Nurs 2012;68:846-855.

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