The association between caregiver distress and individual neuropsychiatric symptoms of dementia

Truzzi, Annibal; Valente, Letice; Engelhardt, Eliasz; Laks, Jerson

doi:10.1590/S1980-57642013DN70300009

ABSTRACT

Neuropsychiatric symptoms (NPS) of dementia constitute one of the most related factors to caregiver burden and patients' early institutionalization. Few studies in Brazil have examined which symptoms are associated with higher levels of caregiver distress.

Objective:

To evaluate the caregiver distress related to individual NPS in familial caregivers of patients with dementia. We also examined which caregiver and patient factors predict caregiver distress associated with NPS.

Methods:

One hundred and fifty-nine familial caregiver and dementia outpatient dyads were included. The majority of the patients had a diagnosis of Alzheimer's disease (66.7%). Caregivers were assessed with a sociodemographic questionnaire, Beck Anxiety and Depression Inventories, and the Neuropsychiatric Inventory - Distress Scale. Patients were submitted to the Mini-Mental State Examination, Functional Activities Questionnaire, and the Neuropsychiatric Inventory. Spearman's rank correlation was used to assess the relationships between the continuous variables. Multiple linear regression analyses with backward stepping were performed to assess the ability of caregiver and patient characteristics to predict levels of caregiver distress associated with NPS.

Results:

Apathy (M=1.9; SD=1.8), agitation (M=1.3; SD=1.8), and aberrant motor behavior (AMB) (M=1.2; SD=1.7) were the most distressful NPS. The frequency/severity of NPS was the strongest factor associated with caregiver distress (rho=0.72; p<0.05).

Conclusion:

The early recognition and management of apathy, agitation and AMB in dementia patients by family members and health professionals may lead to better care and quality of life for both patients and caregivers.

Key words:
neuropsychiatric symptoms; caregiver distress; Alzheimer's disease; dementia.

RESUMO

Os sintomas neuropsiquiátricos (SNP) da demência constituem um dos fatores mais relacionados à sobrecarga do cuidador e à institucionalização precoce do paciente. Poucos estudos brasileiros examinaram quais sintomas estão associados ao desgaste do cuidador.

Objetivo:

Avaliar o desgaste referente aos SNP individuais cuidadores familiares dos pacientes com demência. Nós também analisamos quais fatores dos pacientes e dos cuidadores constituem fortes preditores ao desgaste do cuidador.

Métodos:

Cento e cinquenta cuidadores familiares e pacientes foram incluídos. A maioria dos pacientes possuía um diagnóstico de doença de Alzheimer (66,7%). Os cuidadores foram avaliados através de um questionário sociodemográfico, os Inventários de Ansiedade e Depressão de Beck e o Inventário Neuropsiquiátrico - Desgaste. Os pacientes foram submetidos ao Mini-Exame do Estado Mental, Escala de Atividades Funcionais e ao Inventário Neuropsiquiátrico. A correlação de Spearman foi utilizada para avaliar as relações entre as variáveis contínuas. Análises regressivas lineares múltiplas foram realizadas para analisar, dentre as variáveis dos pacientes e dos cuidadores, os fatores preditores do desgaste do cuidador.

Resultados:

Apatia (M=1,9; DP=1,8), agitação (M=1,3; DP=1,8) e comportamento aberrante motor (CMA) (M=1,2; DP=1,7) foram os SNP mais desgastantes. A frequência/gravidade dos SNP foi o fator mais fortemente associado ao desgaste do cuidador (rho=0.72; p<0,05).

Conclusão:

O reconhecimento precoce e manejo da apatia, agitação e CMA nos pacientes com demência pelos familiares e profissionais de saúde possivelmente levará a uma melhor qualidade vida e cuidado para pacientes e cuidadores.

Palavras-chave:
sintomas neuropsiquiátricos; desgaste do cuidador; doença de Alzheimer; demência.

Texto completo disponível apenas em PDF.

Full text available only in PDF format.

REFERENCES

Truzzi A, Valente L, Ulstein I, Engelhardt E, Laks J, Engedal K. Burnout in familial caregivers of patients with dementia. Rev Bras Psiquiatr 2012; 34:405-412.
Gauthier S, Cummings J, Ballard C, et al. Management of behavioral problems in Alzheimer's disease. Int Psychogeriatr 2010;22:346-372.
Desai AK, Schwartz L, Grossberg GT. Behavioral disturbance in dementia. Curr Psychiatry Rep 2012;14:298-309.
Ferri CP, Ames D, Burns A. Behavioral and psychological symptoms of dementia in developing countries. Int Psychogeriatr2004;16:441-459.
Murman DL, Chen Q, Powell MC, Kuo SB, Bradley CJ, Colenda CC. The incremental direct costs associated with behavioral symptoms in AD. Neurology 2002;59:1721-1729.
Fuh JL., Liu CK, Mega MS, Wang SJ, Cummings JL. Behavioral disorders and caregivers' reaction in Taiwanese patients with Alzheimer's disease. Int Psychogeriatr2001;13:121-128.
Matsumoto N, Ikeda M, Fukuhara R, et al. Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dement Geriatr Cogn Disord 2007;23: 219-224.
Camozzato AL, Kochhann R, Simeoni C, et al. Reliability of the Brazilian Portuguese version of the Neuropsychiatric Inventory (NPI) for patients with Alzheimer's disease and their caregivers. Int Psychogeriatr2008;20:383-393.
McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of department of health and human services task force on Alzheimer's disease. Neurology1984;34: 939-944.
Román GC, Tatemichi TK, Erkinjuntti T, et al. Vascular dementia: diagnostic criteria for research studies. Report of the NINDS-AIREN International Workshop. Neurology1993;43:250-260.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders 4th ed. Washington: American Psychiatric Press; 1994.
Bertolucci PHF, Brucki SMD, Campacci SR, Juliano Y. O mini exame do estado geral em uma população geral - impacto da escolaridade. Arq Neuropsiquiatr 1994;52:1-7.
Pfeffer RI, Kurosaki TT, Harrah CH, Chance JM, Filis S. Measurement of functional activities in older adults in the community. J Gerontol 1982; 37:323-329.
Marra TA, Pereira LSM, Faria CDCM, Pereira DS, Martins MAA, Tirado MGA. Avaliação das atividades de vida diária de idosos com diferentes níveis de demência. Rev Bras Fisioter 2007;11:267-273.
Laks J, Baptista EMR, Contino ALB, de Paula EO, Engelhardt E. Mini-Mental State Examination norms in a community-dwelling sample of elderly with low schooling in Brazil. Cad Saude Publica 2007;23:315-319.
Kaufer DI, Cummings JL, Christine D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: the Neuropsychiatric Inventory Caregiver Distress Scale. J Am Geriatr Soc 1998;46:210-215.
Gorestein C, Andrade L. Validation of a Portuguese version of the Beck Depression Inventory and the State-Trait Anxiety Inventory in Brazilian subjects. Braz J Med Biol Res 1996;29:453-457.
Cunha JA. Manual das versões em português das escalas Beck. São Paulo: Casa do Psicólogo; 2001.
Garrido R, Menezes PR. Impact on caregivers of elderly patients with dementia treated at a psychogeriatric service. Rev Saude Publica 2004; 28:835-841.
Cassis SVA, Karnakis T, Moraes TA, Curiati JAE, Quadrante ACR, Magaldi RM. Correlation between burden on caregiver and clinical characteristics of patients with dementia. Rev Assoc Med Bras 2007;53: 497-501.
Lyketsos CG, Steinberg M, Tschanz JT, Norton MC, Steffens DC, Breitner JC. Mental and behavioral disturbances in dementia: findings from the Cache County Study on Memory in Aging. Am J Psychiatry 2000; 157:708-714.
Vega UM, Marinho V, Engelhardt E,. Laks J Sintomas neuropsiquiátricos nas demências: relato preliminar de uma avaliação prospectiva em um ambulatório do Brasil. Arq Neuropsiquiatr2007;65:498-502.
Balieiro Jr. AP, Sobreira EST, Pena MCS, Silva-Filho JH, Vale FAC. Caregiver distress associated with behavioral and psychological symptoms in mild Alzheimer's disease. Dement Neuropsychol 2010;4:238-244.
Tagariello P, Girardi P, Amore M. Depression and apathy in dementia: same syndrome or different constructs? A critical review. Arch Gerontol Geriatr 2009;49:246-249.
Brodaty H, Burns K. Nonpharmacological management of apathy in dementia: a systematic review. Am J Geriatr Psychiatry 2012;20:549-564.
Mangone CA, Bueno AA, Allegri R, et al. Behavioral and psychological symptoms of dementia in Latin America. Int Psychogeriatr2000;12SI: 415-418.
Bergh S, Engedal K, Roen I, Selbaek G. The course of neuropsychiatric symptoms in patients with dementia in Norwegian nursing homes. Int Psychogeriatr2011;23:1231-1239.
Truzzi A, Ulstein I, Valente L, et al. Patterns of neuropsychiatric sub-syndromes in Brazilian and Norwegian patients with dementia. Int Psychogeriatr2013;25:228-235.
Aarsland D, Cummings JL, Yenner G, Miller B. Relationship of aggressive behavior to other neuropsychiatric symptoms in patients with Alzheimer's disease. Am J Psychiatry1996;153:243-247.
Black W, Almeida OP. A systematic review of the association between the Behavioral and Psychological Symptoms of Dementia and burden of care. Int Psychogeriatr2004;16:295-315.

Publication Dates

Publication in this collection
Jul-Sep 2013

History

Received
19 June 2013
Accepted
20 Aug 2013

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

[1] Truzzi A, Valente L, Ulstein I, Engelhardt E, Laks J, Engedal K. Burnout in familial caregivers of patients with dementia. Rev Bras Psiquiatr 2012; 34:405-412.

[2] Gauthier S, Cummings J, Ballard C, et al. Management of behavioral problems in Alzheimer's disease. Int Psychogeriatr 2010;22:346-372.

[3] Desai AK, Schwartz L, Grossberg GT. Behavioral disturbance in dementia. Curr Psychiatry Rep 2012;14:298-309.

[4] Ferri CP, Ames D, Burns A. Behavioral and psychological symptoms of dementia in developing countries. Int Psychogeriatr2004;16:441-459.

[5] Murman DL, Chen Q, Powell MC, Kuo SB, Bradley CJ, Colenda CC. The incremental direct costs associated with behavioral symptoms in AD. Neurology 2002;59:1721-1729.

[6] Fuh JL., Liu CK, Mega MS, Wang SJ, Cummings JL. Behavioral disorders and caregivers' reaction in Taiwanese patients with Alzheimer's disease. Int Psychogeriatr2001;13:121-128.

[7] Matsumoto N, Ikeda M, Fukuhara R, et al. Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dement Geriatr Cogn Disord 2007;23: 219-224.

[8] Camozzato AL, Kochhann R, Simeoni C, et al. Reliability of the Brazilian Portuguese version of the Neuropsychiatric Inventory (NPI) for patients with Alzheimer's disease and their caregivers. Int Psychogeriatr2008;20:383-393.

[9] McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of department of health and human services task force on Alzheimer's disease. Neurology1984;34: 939-944.

[10] Román GC, Tatemichi TK, Erkinjuntti T, et al. Vascular dementia: diagnostic criteria for research studies. Report of the NINDS-AIREN International Workshop. Neurology1993;43:250-260.

[11] American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders 4th ed. Washington: American Psychiatric Press; 1994.

[12] Bertolucci PHF, Brucki SMD, Campacci SR, Juliano Y. O mini exame do estado geral em uma população geral - impacto da escolaridade. Arq Neuropsiquiatr 1994;52:1-7.

[13] Pfeffer RI, Kurosaki TT, Harrah CH, Chance JM, Filis S. Measurement of functional activities in older adults in the community. J Gerontol 1982; 37:323-329.

[14] Marra TA, Pereira LSM, Faria CDCM, Pereira DS, Martins MAA, Tirado MGA. Avaliação das atividades de vida diária de idosos com diferentes níveis de demência. Rev Bras Fisioter 2007;11:267-273.

[15] Laks J, Baptista EMR, Contino ALB, de Paula EO, Engelhardt E. Mini-Mental State Examination norms in a community-dwelling sample of elderly with low schooling in Brazil. Cad Saude Publica 2007;23:315-319.

[16] Kaufer DI, Cummings JL, Christine D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: the Neuropsychiatric Inventory Caregiver Distress Scale. J Am Geriatr Soc 1998;46:210-215.

[17] Gorestein C, Andrade L. Validation of a Portuguese version of the Beck Depression Inventory and the State-Trait Anxiety Inventory in Brazilian subjects. Braz J Med Biol Res 1996;29:453-457.

[18] Cunha JA. Manual das versões em português das escalas Beck. São Paulo: Casa do Psicólogo; 2001.

[19] Garrido R, Menezes PR. Impact on caregivers of elderly patients with dementia treated at a psychogeriatric service. Rev Saude Publica 2004; 28:835-841.

[20] Cassis SVA, Karnakis T, Moraes TA, Curiati JAE, Quadrante ACR, Magaldi RM. Correlation between burden on caregiver and clinical characteristics of patients with dementia. Rev Assoc Med Bras 2007;53: 497-501.

[21] Lyketsos CG, Steinberg M, Tschanz JT, Norton MC, Steffens DC, Breitner JC. Mental and behavioral disturbances in dementia: findings from the Cache County Study on Memory in Aging. Am J Psychiatry 2000; 157:708-714.

[22] Vega UM, Marinho V, Engelhardt E,. Laks J Sintomas neuropsiquiátricos nas demências: relato preliminar de uma avaliação prospectiva em um ambulatório do Brasil. Arq Neuropsiquiatr2007;65:498-502.

[23] Balieiro Jr. AP, Sobreira EST, Pena MCS, Silva-Filho JH, Vale FAC. Caregiver distress associated with behavioral and psychological symptoms in mild Alzheimer's disease. Dement Neuropsychol 2010;4:238-244.

[24] Tagariello P, Girardi P, Amore M. Depression and apathy in dementia: same syndrome or different constructs? A critical review. Arch Gerontol Geriatr 2009;49:246-249.

[25] Brodaty H, Burns K. Nonpharmacological management of apathy in dementia: a systematic review. Am J Geriatr Psychiatry 2012;20:549-564.

[26] Mangone CA, Bueno AA, Allegri R, et al. Behavioral and psychological symptoms of dementia in Latin America. Int Psychogeriatr2000;12SI: 415-418.

[27] Bergh S, Engedal K, Roen I, Selbaek G. The course of neuropsychiatric symptoms in patients with dementia in Norwegian nursing homes. Int Psychogeriatr2011;23:1231-1239.

[28] Truzzi A, Ulstein I, Valente L, et al. Patterns of neuropsychiatric sub-syndromes in Brazilian and Norwegian patients with dementia. Int Psychogeriatr2013;25:228-235.

[29] Aarsland D, Cummings JL, Yenner G, Miller B. Relationship of aggressive behavior to other neuropsychiatric symptoms in patients with Alzheimer's disease. Am J Psychiatry1996;153:243-247.

[30] Black W, Almeida OP. A systematic review of the association between the Behavioral and Psychological Symptoms of Dementia and burden of care. Int Psychogeriatr2004;16:295-315.

Brasil