Dementia caregiver burden in a Brazilian sample: Association to neuropsychiatric symptoms

Fialho, Patrícia Paes Araujo; Koenig, Anne Marise; Santos, Etelvina Lucas dos; Guimarães, Henrique Cerqueira; Beato, Rogério Gomes; Carvalho, Viviane Amaral; Machado, Thais Helena; Caramelli, Paulo

doi:10.1590/S1980-57642009DN30200011

Abstract

Taking care of elderly demented individuals, especially when they present behavioral changes, can be very exhaustive for both family and caregivers. Generally, this leads to changes in the family lifestyle, and the caregiver must deal with a range of problems. Information on this topic in Latin America, including Brazil, remains scarce.

Objective:

To investigate the relationship between the presence of neuropsychiatric symptoms and the level of caregiver burden in a group of Brazilian elderly with dementia.

Methods:

The Brazilian versions of the Zarit Caregiver Burden Interview (ZBI) and of the Neuropsychiatric Inventory (NPI) were administered to a total of 83 family-caregivers of patients with dementia followed at a university-affiliated outpatient clinic. Pearson's correlations were calculated to measure the level of association between the scores on both instruments.

Results:

Among the caregivers, 83.1% were women, and had a mean age of 55.6±12.8 years. The ZBI scores ranged from 3 to 79 (mean=31.4). Patients' NPI scores ranged from 0 to 102 (mean=26.9), consistent with a significant degree of behavioral manifestations in most patients. A significant positive correlation was found between ZBI and NPI scores (r=0.402; p=0.000).

Conclusion:

The presence and severity of behavioral manifestations assessed by the NPI were associated with a high level of caregiver burden in this sample of Brazilian elderly with dementia.

Key words:
dementia; neuropsychiatric symptoms; caregiver burden.

Resumo

Cuidar de idosos com demência, especialmente se eles apresentam transtornos de comportamento, pode ser extremantente exaustivo para os familiares e cuidadores. Geralmente, ocorrem mudanças no estilo de vida da família, e o cuidador precisa lidar com grande diversidade de problemas. Informações sobre este tema na América Latina, incluindo o Brasil, ainda permanece escasso.

Objetivo:

Investigar a relação entre a presença de sintomas neuropsiquiátricos e o nível de sobrecarga do cuidador em um grupo de idosos brasileiros com demência.

Métodos:

As versões brasileiras do Inventário de Sobrecarga de Zarit (ISZ) e do Inventário Neuropsiquiátrico (INP) foram administrados a um total de 83 cuidadores-familiares de pacientes com demência acompanhados em um ambulatório universitário. A correlação de Pearson foi calculada para medir o nível de associação entre os escores em ambos os instrumentos.

Resultados:

Entre os cuidadores, 83,1% eram mulheres, com idade média de 55,6±12,8 anos. Os escores do ISZ variaram entre 3 a 79 (média=31,4). Os escores do INP dos pacientes alcaçaram escores entre 0 a 102 (média=26,9), compatível com elevado grau de manifestações comportamentais na maioria dos pacientes. Uma correlação positiva significativa foi encontrada entre os escores obtidos no ISZ e o INP (r=0,402; p=0,000).

Conclusão:

A presença e a gravidade das manifestações comportamentais avaliadas pelo INP estão associadas ao alto nível de sobrecarga do cuidador nesta amostra de idosos brasileiros com demência.

Palavras-chave:
demência; sintomas neuropsiquiátricos; sobrecarga do cuidador.

Texto completo disponível apenas em PDF.

Full text available only in PDF format.

References

¹
Taub A, Andreoli SB, Bertolucci PH. Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview. Cad Saúde Pública, Rio de Janeiro 2004;20:372-376.
²
Rabins PV, Mace NL, Lucas MJ. The impact of dementia on the family. JAMA 1982;248:333-335.
³
Mittelman MS, Ferris SH, Shulman E, et al. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist 1995;35:792-802.
⁴
Gonçalves LHT, Alvarez AM, Santos SMA. Os cuidadores leigos de pessoas idosas. In: Duarte YAO, Diogo MJE (Eds). Atendimento domiciliar: um enfoque gerontológico. São Paulo: Editora Atheneu; 2005:102-110.
⁵
Ory MG, Hoffman RR, Yee JL, Tennstedt S, Schulz R. Prevalence and impact f caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 1999;39:177-185.
⁶
Jang Y, Clay OJ, Roth DL, Haley WE, Mittelman MS. Neuroticism and longitudinal change in caregiver depression: impact of a spouse-caregiver intervention program. Gerontologist 2004;44:311-317.
⁷
Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer's disease during the transition to institutionalization? Results from the New York University Caregiver Intervention Study. J Am Geriatr Soc 2008;56:421-428.
⁸
Ferreti CE, Bertolucci PHF, Minett TSC. Behavior disorders and subjective burden among caregivers of demented patients. Dement Neuropsychol 2007;2:190-195.
⁹
Foss MP, Lange C, Filho JHS, Brunini F, Vale FAC. Support groups for caregivers of patients with dementia: a comparative study. Dement Neuropsychol 2007;2:196-202.
¹⁰
Cummings JL, Mega M, Gray K, Rosemberg-Thompson S, Carusi DA, Gornbein J. The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia - NPI. Neurology 1994;44:2308-2314.
¹¹
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV) 4th ed. Washington, D.C.: American Psychiatric Association;1994.
¹²
Camozzato AL, Kochhann R, Simeoni C, Konrath CS, Franz AP, Carvalho A, Chaves ML. Reliability of the Brazilian Portuguese version of the neuropsychiatric inventory (NPI) for patients with Alzheimer's disease and their caregivers. Int Psychogeriatr 2008;20:383-393.
¹³
Néri AL, Carvalho VAML. O bem-estar do cuidador: aspectos psicossociais. In: Freitas EV, Py L, Néri AL, Cançado FAX, Gorzoni ML, Rocha SM, Organizadores. Tratado de Geriatria e Gerontologia. Rio de Janeiro: Ed Guanabara Koogan; 2002: 778-790.
¹⁴
Gaugler JE, Zarit SH, Pearlin LI. The onset of dementia caregiving and its longitudinal implications. Psychol Aging 2003; 18:171-80.
¹⁵
Schreiner AS, Morimoto T, Arai Y, Zarit S. Assessing family caregiver's mental health using a statistically derived cut-off score for the Zarit Burden Interview. Aging Ment Health 2006;10:107-111.
¹⁶
Cassis SVA, Karnakis T, Moraes TA, Curiati JAE, Quadrante ACR, Magaldi RM. Correlação entre o estresse do cuidador e as características clínicas do paciente portador de demência. Rev Assoc Med Bras 2007;53:497-501.
¹⁷
Torti FM, Gwyther LP, Reed SD, Friedman JY, Schulman KA. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord 2004;18:99-109.
¹⁸
Almberg B, Grafström M, Winblad B. Caring for a demented elderly person-burden and burnout among caregiving relations. J Adv Nurs 1997;25:109-116.
¹⁹
Truzzi A, Souza W, Bucasio E, et al. Burnout in a sample of Alzheimer's disease caregivers in Brazil. Eur J Psychiat 2008; 22:151-160.
²⁰
Takai M, Takahashi M, Iwamitsu Y, et al. The experience of burnout among home caregivers of patients with dementia: Relations to depression and quality of life. Arch Gerontol Geriatr 2008;49:1-5.
²¹
Dunkin JJ, Anderson-Hanley C. Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology 1998;51:53-60.

Publication Dates

Publication in this collection
Apr-Jun 2009

History

Received
26 Mar 2009
Accepted
26 May 2009

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

[1] ¹
Taub A, Andreoli SB, Bertolucci PH. Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview. Cad Saúde Pública, Rio de Janeiro 2004;20:372-376.

[2] ²
Rabins PV, Mace NL, Lucas MJ. The impact of dementia on the family. JAMA 1982;248:333-335.

[3] ³
Mittelman MS, Ferris SH, Shulman E, et al. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist 1995;35:792-802.

[4] ⁴
Gonçalves LHT, Alvarez AM, Santos SMA. Os cuidadores leigos de pessoas idosas. In: Duarte YAO, Diogo MJE (Eds). Atendimento domiciliar: um enfoque gerontológico. São Paulo: Editora Atheneu; 2005:102-110.

[5] ⁵
Ory MG, Hoffman RR, Yee JL, Tennstedt S, Schulz R. Prevalence and impact f caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 1999;39:177-185.

[6] ⁶
Jang Y, Clay OJ, Roth DL, Haley WE, Mittelman MS. Neuroticism and longitudinal change in caregiver depression: impact of a spouse-caregiver intervention program. Gerontologist 2004;44:311-317.

[7] ⁷
Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer's disease during the transition to institutionalization? Results from the New York University Caregiver Intervention Study. J Am Geriatr Soc 2008;56:421-428.

[8] ⁸
Ferreti CE, Bertolucci PHF, Minett TSC. Behavior disorders and subjective burden among caregivers of demented patients. Dement Neuropsychol 2007;2:190-195.

[9] ⁹
Foss MP, Lange C, Filho JHS, Brunini F, Vale FAC. Support groups for caregivers of patients with dementia: a comparative study. Dement Neuropsychol 2007;2:196-202.

[10] ¹⁰
Cummings JL, Mega M, Gray K, Rosemberg-Thompson S, Carusi DA, Gornbein J. The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia - NPI. Neurology 1994;44:2308-2314.

[11] ¹¹
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV) 4th ed. Washington, D.C.: American Psychiatric Association;1994.

[12] ¹²
Camozzato AL, Kochhann R, Simeoni C, Konrath CS, Franz AP, Carvalho A, Chaves ML. Reliability of the Brazilian Portuguese version of the neuropsychiatric inventory (NPI) for patients with Alzheimer's disease and their caregivers. Int Psychogeriatr 2008;20:383-393.

[13] ¹³
Néri AL, Carvalho VAML. O bem-estar do cuidador: aspectos psicossociais. In: Freitas EV, Py L, Néri AL, Cançado FAX, Gorzoni ML, Rocha SM, Organizadores. Tratado de Geriatria e Gerontologia. Rio de Janeiro: Ed Guanabara Koogan; 2002: 778-790.

[14] ¹⁴
Gaugler JE, Zarit SH, Pearlin LI. The onset of dementia caregiving and its longitudinal implications. Psychol Aging 2003; 18:171-80.

[15] ¹⁵
Schreiner AS, Morimoto T, Arai Y, Zarit S. Assessing family caregiver's mental health using a statistically derived cut-off score for the Zarit Burden Interview. Aging Ment Health 2006;10:107-111.

[16] ¹⁶
Cassis SVA, Karnakis T, Moraes TA, Curiati JAE, Quadrante ACR, Magaldi RM. Correlação entre o estresse do cuidador e as características clínicas do paciente portador de demência. Rev Assoc Med Bras 2007;53:497-501.

[17] ¹⁷
Torti FM, Gwyther LP, Reed SD, Friedman JY, Schulman KA. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord 2004;18:99-109.

[18] ¹⁸
Almberg B, Grafström M, Winblad B. Caring for a demented elderly person-burden and burnout among caregiving relations. J Adv Nurs 1997;25:109-116.

[19] ¹⁹
Truzzi A, Souza W, Bucasio E, et al. Burnout in a sample of Alzheimer's disease caregivers in Brazil. Eur J Psychiat 2008; 22:151-160.

[20] ²⁰
Takai M, Takahashi M, Iwamitsu Y, et al. The experience of burnout among home caregivers of patients with dementia: Relations to depression and quality of life. Arch Gerontol Geriatr 2008;49:1-5.

[21] ²¹
Dunkin JJ, Anderson-Hanley C. Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology 1998;51:53-60.

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