Behavior disorders and subjective burden among caregivers of demented patients

Ferretti, Ceres Eloah de Lucena; Bertolucci, Paulo Henrique Ferreira; Minett, Thaís Soares Cianciarullo

doi:10.1590/S1980-57642008DN10200012

Abstract

Many patients with dementia live within the community supported by their family and friends. Majority of patient caregivers suffer from high levels of stress.

Methods:

A quasi-experimental study, which compared the effects of nursing interventions on behavior disorders in both patients with moderate to severe dementia and their caregivers, followed over 18 months. The assessments were performed at the outpatient clinic of the Federal University of São Paulo and again at patients' homes with their primary caregiver, after informed consent form. Measurements were performed at baseline and after 18 months (pre and post-test). The instruments used were: The CDR, NPI and NPI-D; Katz Index and FAQ. Simultaneously, caregivers were enrolled onto the Dementia Education Program.

Results:

The final sample was composed of 31 subjects, having a mean age of 77.4 y.o. (±8 SD). Nursing interventions were effective in reducing some of the behavioral disturbances (Z= -3.1; p=0.002), such as Aggression (Z= -3.7; p<0.001) and anxiety (Z= -2.3; p=0.023). Caregiver distress also reduced upon interventions (Z= -2.2; p=0.030).

Conclusion:

Our results indicate nursing interventions may be effective in reducing the frequency and severity of behavioral disorders and subjective burden among caregivers. Education Programs can improve caregiver burden through conveying information on difficulties related to the disease and how to deal with them.

Key words:
dementia; behavioral disorders; caregiver distress; nursing intervention.

Resumo

Muitos pacientes com demência vivem na comunidade amparados por suas famílias e amigos. Muitos destes cuidadores sofrem de altos níveis de estresse.

Métodos:

Estudo quase-experimental, que comparou os efeitos de intervenções de enfermagem nas alterações de comportamento de pacientes com demência moderada a grave, e seus cuidadores, acompanhados por 18 meses. As avaliações iniciais foram feitas no ambulatório de Neurologia do Comportamento da Universidade Federal de São Paulo e as subseqüentes no domicílio do paciente, com o cuidador primário, após consentimento informado. As avaliações foram realizadas na visita inicial e após 18 meses (pré e pós teste). Os instrumentos utilizados foram: CDR, INP e INP-E; Índice de Katz e QAF. Simultâneamente, os cuidadores foram incluídos no Programa de Educação em Demências.

Resultados:

A amostra final foi composta 31 sujeitos, com idade média de 77,4 (±8 DP). As intervenções de enfermagem foram efetivas na redução de algumas alterações de comportamento (Z= -3,1; p=0,002), como agressividades (Z= -3,7; p<0,001) e ansiedade (Z= -2,3; p=0,023). O estresse do cuidador também foi reduzido (Z= -2,2; p=0,030).

Conclusão:

As intervenções de enfermagem podem ser efetivas na redução da severidade e da freqüência das alterações de comportamento e na sobrecarga subjetiva entre cuidadores. Programas de Educação podem melhorar a sobrecarga dos cuidadores, por oferecer informações acerca das dificuldades relacionadas à doença e como lidarem com elas.

Palavras-chave:
demência; alterações de comportamento; estresse dos cuidadores; intervenção de enfermagem.

Texto completo disponível apenas em PDF.

Full text available only in PDF format.

References

¹
Knight BG. Lutzky SM,Acofsky-Urban FA meta-analytic review of interventions for caregiver's distress: recommendation for future research. Gerontologist 1993;33:240-248
²
Donaldson C, Tarrier N, Burns A. The impact of symptoms of dementia on caregivers. Br J Psychiatry 1997;170:62-68.
³
Haley WE. The family caregiver's role in Alzheimer's disease. Neurology 1997;48(Suppl 6):S25-S29.
⁴
Gilleard JC, Belford H, Gilleard E, Whittick JE, Gledhill K. Emotional distress amongst the supporters of the elderly mentally infirm. Br J Psychiatry 1984;145:172-177.
⁵
Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin B. A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. JAMA 1996;276:725-1731.
⁶
Brodaty H, Gresham M. Effect of training programme to reduce stress in carers of patients with dementia. BMJ 1989; 299:1375-1379.
⁷
Bourgeois MS, Schulz R. Interventions for caregivers of patients with Alzheimer's disease: A review and analysis of content, process, and outcomes. Int J Aging Hum Dev 1996;43:35-92.
⁸
Brodaty H. Are Carrier Interventions Effective? Alzheimer´s & Dementia. 2006; 2 (Suppl 1): S28.
⁹
Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc 2003;51:657-664.
¹⁰
Cummings JL. Dementia: the failing brain. Lancet 1995; 345:1481-1484.
¹¹
Leroi I, Steele C, Lyketsos G. The care of patients with dementia. Rev Clin Gerontol 1999;9:235-255.
¹²
Falsetti AE. Risperidone for control of agitation in dementia patients. Am J Health Syst Pharm 2000;57:862-870.
¹³
Pelonero AL, Levenson JL, Pandurangi AK. Neuroleptic malignant syndrome: a review. Psychiatr Serv 1998;49:1163-1172.
¹⁴
Minett TS, Thomas A, Wilkinson LM et al. What happens when donepezil is suddenly withdrawn? An open label trial in dementia with Lewy bodies and Parkinson's disease with dementia. Int J Geriatr Psychiatry 2003;18:988-93.
¹⁵
Tamai S. Tratamento dos transtornos do comportamento de pacientes com demência. Rev Bras Psiquiatr 2002;24 (Supl 1).
¹⁶
Willians BR, Nazarians A, Gill MA. A review of rivastigmine: a reversible cholinesterase inhibitor. Clin Ther 2003;25:1634-53.
¹⁷
Petenatti C, Annicchiarico R, Caltagirone C. Clinical pharmacological of anti-Alzheimer drugs. Fundam Clin Pharmacol 2003;17:659.
¹⁸
Ferretti CEL, Bertoluci PHF. A enfermagem no contexto das demências: um modelo assistencial. Alzheimer Hoje 2002;3:3-15.
¹⁹
Ferretti CEL, Bertolucci PHF.A Enfermagem nas demências: uma visão multidisciplinar. J Bras Neuropsiquiatr Ger 2001;2.
²⁰
Garrido R, Almeida OP. Distúrbios de comportamento em pacientes com demência: impacto sobre a vida do cuidador. Arq Neuropsiquiatr 1999;57:427-434.
²¹
Scott JP, Roberto KA, Hutton JT. Families of Alzheimer's victims. Family support to the caregivers. J Am Geriatr Soc 1986;34:348-54.
²²
Voyer P, Martin LS. Improving geriatric mental health nursing care: making a case for going beyond psychotropic medications. Int J Ment Health Nurs 2003;12:11-21.
²³
Lai CK, Arthur DG. Wandering behaviour in people with dementia. J Adv Nurs 2003;44:173-82.
²⁴
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV) 4th ed. Washington, D.C.: American Psychiatric Association; 1994.
²⁵
Almeida OP, Nitrini R. Instrumentos para avaliação de pacientes com demência. Rev Psiquiatr Clin 1999;26:78-89.
²⁶
Cummings Jl, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: Comprehensive assessment of psychopatology in dementia. Neurology 1994;44:2308-2314.
²⁷
Katz S. The Index of ADL: A Standardized Measure of Biological and Psychological Functioning. J Am Med Assoc 1963; 185:914-19.
²⁸
28.Pfeffer RI, Kurosaki TT, Harrah CH, Chance JM. Measurement of functional activities in older adults in the community. J Gerontol 1992;37:323-329.
²⁹
Doody RS, Stevens JC, Dubinsky RM, et al. Cummings JL. Practice Parameter: Management of dementia (an evidence - based review). Report of Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2001; 56:1154-1166.
³⁰
Olazarán J. Non-pharmacological therapies in Alzheimer's Disease: a systematic review of efficacy. Alzheimer´s & Dementia 2006;2(Suppl 1):S28.
³¹
Huell M, Jost E, Voight-Radloff S, Dykierek P, Scmidtke K. Effects of psychosocial parallel group interventions for patients with dementia and their caregivers. Alzheimer´s & Dementia 2006; 2(Suppl 1):S586.34.
³²
Bird M. Non-pharmacological management of behavior problems in dementia: a conceptual discussion. Alzheimer´s & Dementia 2006; 2(Suppl 1):S28.36.
³³
Marriot A, Donaldson C, Tarrier N, Burns A. Effectiveness of cognitive-behavioral family intervention in reducing the burden of care in carers of patients with Alzheimer's disease. Brith J Psychiatry 2000;176:557-562.
³⁴
Bottino CMC, Carvalho IAM, Alvarez AMMA et al. Reabilitação cognitiva em pacientes com doença de Alzheimer. Arq Neuropsiquiatr 2002;60:70-79.
³⁵
Robinson KM, Adkisson P. Weinrich S. Problem behaviour, caregiver reactions, and impact among caregivers of persons with Alzheimer's disease. J Adv Nurs 2001;36:573-382.
³⁶
Keneth WH, Tornatore J, Center B, Oswald SW. Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. JAGS 2001;9:450-463.

Publication Dates

Publication in this collection
Apr-Jun 2007

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

[1] ¹
Knight BG. Lutzky SM,Acofsky-Urban FA meta-analytic review of interventions for caregiver's distress: recommendation for future research. Gerontologist 1993;33:240-248

[2] ²
Donaldson C, Tarrier N, Burns A. The impact of symptoms of dementia on caregivers. Br J Psychiatry 1997;170:62-68.

[3] ³
Haley WE. The family caregiver's role in Alzheimer's disease. Neurology 1997;48(Suppl 6):S25-S29.

[4] ⁴
Gilleard JC, Belford H, Gilleard E, Whittick JE, Gledhill K. Emotional distress amongst the supporters of the elderly mentally infirm. Br J Psychiatry 1984;145:172-177.

[5] ⁵
Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin B. A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. JAMA 1996;276:725-1731.

[6] ⁶
Brodaty H, Gresham M. Effect of training programme to reduce stress in carers of patients with dementia. BMJ 1989; 299:1375-1379.

[7] ⁷
Bourgeois MS, Schulz R. Interventions for caregivers of patients with Alzheimer's disease: A review and analysis of content, process, and outcomes. Int J Aging Hum Dev 1996;43:35-92.

[8] ⁸
Brodaty H. Are Carrier Interventions Effective? Alzheimer´s & Dementia. 2006; 2 (Suppl 1): S28.

[9] ⁹
Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc 2003;51:657-664.

[10] ¹⁰
Cummings JL. Dementia: the failing brain. Lancet 1995; 345:1481-1484.

[11] ¹¹
Leroi I, Steele C, Lyketsos G. The care of patients with dementia. Rev Clin Gerontol 1999;9:235-255.

[12] ¹²
Falsetti AE. Risperidone for control of agitation in dementia patients. Am J Health Syst Pharm 2000;57:862-870.

[13] ¹³
Pelonero AL, Levenson JL, Pandurangi AK. Neuroleptic malignant syndrome: a review. Psychiatr Serv 1998;49:1163-1172.

[14] ¹⁴
Minett TS, Thomas A, Wilkinson LM et al. What happens when donepezil is suddenly withdrawn? An open label trial in dementia with Lewy bodies and Parkinson's disease with dementia. Int J Geriatr Psychiatry 2003;18:988-93.

[15] ¹⁵
Tamai S. Tratamento dos transtornos do comportamento de pacientes com demência. Rev Bras Psiquiatr 2002;24 (Supl 1).

[16] ¹⁶
Willians BR, Nazarians A, Gill MA. A review of rivastigmine: a reversible cholinesterase inhibitor. Clin Ther 2003;25:1634-53.

[17] ¹⁷
Petenatti C, Annicchiarico R, Caltagirone C. Clinical pharmacological of anti-Alzheimer drugs. Fundam Clin Pharmacol 2003;17:659.

[18] ¹⁸
Ferretti CEL, Bertoluci PHF. A enfermagem no contexto das demências: um modelo assistencial. Alzheimer Hoje 2002;3:3-15.

[19] ¹⁹
Ferretti CEL, Bertolucci PHF.A Enfermagem nas demências: uma visão multidisciplinar. J Bras Neuropsiquiatr Ger 2001;2.

[20] ²⁰
Garrido R, Almeida OP. Distúrbios de comportamento em pacientes com demência: impacto sobre a vida do cuidador. Arq Neuropsiquiatr 1999;57:427-434.

[21] ²¹
Scott JP, Roberto KA, Hutton JT. Families of Alzheimer's victims. Family support to the caregivers. J Am Geriatr Soc 1986;34:348-54.

[22] ²²
Voyer P, Martin LS. Improving geriatric mental health nursing care: making a case for going beyond psychotropic medications. Int J Ment Health Nurs 2003;12:11-21.

[23] ²³
Lai CK, Arthur DG. Wandering behaviour in people with dementia. J Adv Nurs 2003;44:173-82.

[24] ²⁴
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV) 4th ed. Washington, D.C.: American Psychiatric Association; 1994.

[25] ²⁵
Almeida OP, Nitrini R. Instrumentos para avaliação de pacientes com demência. Rev Psiquiatr Clin 1999;26:78-89.

[26] ²⁶
Cummings Jl, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: Comprehensive assessment of psychopatology in dementia. Neurology 1994;44:2308-2314.

[27] ²⁷
Katz S. The Index of ADL: A Standardized Measure of Biological and Psychological Functioning. J Am Med Assoc 1963; 185:914-19.

[28] ²⁸
28.Pfeffer RI, Kurosaki TT, Harrah CH, Chance JM. Measurement of functional activities in older adults in the community. J Gerontol 1992;37:323-329.

[29] ²⁹
Doody RS, Stevens JC, Dubinsky RM, et al. Cummings JL. Practice Parameter: Management of dementia (an evidence - based review). Report of Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2001; 56:1154-1166.

[30] ³⁰
Olazarán J. Non-pharmacological therapies in Alzheimer's Disease: a systematic review of efficacy. Alzheimer´s & Dementia 2006;2(Suppl 1):S28.

[31] ³¹
Huell M, Jost E, Voight-Radloff S, Dykierek P, Scmidtke K. Effects of psychosocial parallel group interventions for patients with dementia and their caregivers. Alzheimer´s & Dementia 2006; 2(Suppl 1):S586.34.

[32] ³²
Bird M. Non-pharmacological management of behavior problems in dementia: a conceptual discussion. Alzheimer´s & Dementia 2006; 2(Suppl 1):S28.36.

[33] ³³
Marriot A, Donaldson C, Tarrier N, Burns A. Effectiveness of cognitive-behavioral family intervention in reducing the burden of care in carers of patients with Alzheimer's disease. Brith J Psychiatry 2000;176:557-562.

[34] ³⁴
Bottino CMC, Carvalho IAM, Alvarez AMMA et al. Reabilitação cognitiva em pacientes com doença de Alzheimer. Arq Neuropsiquiatr 2002;60:70-79.

[35] ³⁵
Robinson KM, Adkisson P. Weinrich S. Problem behaviour, caregiver reactions, and impact among caregivers of persons with Alzheimer's disease. J Adv Nurs 2001;36:573-382.

[36] ³⁶
Keneth WH, Tornatore J, Center B, Oswald SW. Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. JAGS 2001;9:450-463.

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