Translation and cultural adaptation of the Positive Aspects of Caregiving Scale for caregivers of people living with dementia in Brazilian context: a methodological study.

BACKGROUND: The Positive Aspects of Caregiving (PAC) scale is used to assess psychosocial benefits provided to caregivers by the task of caring. The PAC scale consists of nine items, assessed using a five-point Likert scale, with higher values indicating greater positive perceptions and gains from the caregiving experience. OBJECTIVE: To translate and culturally adapt the PAC scale for informal Brazilian caregivers of people with dementia. DESIGN AND SETTING: A methodological study was conducted at the Federal University of São Carlos. METHODS: The following stages were carried out: Translation; Synthesis of the translations; Back-translation; Evaluation by an experts' committee; and Pre-test. RESULTS: Two independent professionals translated the PAC scale. The consensus version was obtained by merging both translations, which were back-translated into English by a third translator. The expert committee comprised three specialists in the area and project researchers. All scale items presented a Content Validity Index of 1 (CVI = 1.0), and thus remained in the pre-final version of the instrument. The instrument was pre-tested with seven caregivers of people with dementia, the majority of whom were women (57.1%), with a degree of kinship corresponding to sons/daughters (57.1%) and an average age of 55.2 (± 4.1) years. The caregivers considered it clear and understandable and made no suggestions for changes. CONCLUSION: The PAC scale was translated and culturally adapted for use by informal caregivers of people with dementia in Brazil. However, a psychometric analysis of the instrument is necessary to provide normative data for this population group.

Translation and cultural adaptation of the Positive Aspects of Caregiving Scale for caregivers of people living with dementia in Brazilian context: a methodological study

ABSTRACT BACKGROUND: The Positive Aspects of Caregiving (PAC) scale is used to assess psychosocial benefits provided to caregivers by the task of caring. The PAC scale consists of nine items, assessed using a five-point Likert scale, with higher values indicating greater positive perceptions and gains from the caregiving experience. OBJECTIVE: To translate and culturally adapt the PAC scale for informal Brazilian caregivers of people with dementia. DESIGN AND SETTING: A methodological study was conducted at the Federal University of São Carlos. METHODS: The following stages were carried out: Translation; Synthesis of the translations; Back-translation; Evaluation by an experts' committee; and Pre-test. RESULTS: Two independent professionals translated the PAC scale. The consensus version was obtained by merging both translations, which were back-translated into English by a third translator. The expert committee comprised three specialists in the area and project researchers. All scale items presented a Content Validity Index of 1 (CVI = 1.0), and thus remained in the pre-final version of the instrument. The instrument was pre-tested with seven caregivers of people with dementia, the majority of whom were women (57.1%), with a degree of kinship corresponding to sons/daughters (57.1%) and an average age of 55.2 (± 4.1) years. The caregivers considered it clear and understandable and made no suggestions for changes. CONCLUSION: The PAC scale was translated and culturally adapted for use by informal caregivers of people with dementia in Brazil. However, a psychometric analysis of the instrument is necessary to provide normative data for this population group.

A sobrecarga de cuidadores: como as características de idosos e seus cuidadores se articulam / The burden of caregivers: how the characteristics of the elderly and their caregivers articulate / La sobrecarga de los cuidadores: cómo se articulan las características de los ancianos y sus cuidadores

Objetivo: analisar a associação entre as características de idosos e cuidadores e seus impactos na sobrecarga dos cuidadores. Método: em 2021, foram avaliados 50 pares de cuidadores informais e idosos pelo perfil sociodemográfico, de saúde, Escala Hospitalar de Ansiedade e Depressão (HADS), Entrevista de Sobrecarga de Zarit-Brief (ZBI-12) e informações sobre grau de dependência dos idosos para atividades básicas e instrumentais (ABVD e AIVD). Modelos de regressão avaliaram os escores ZBI-12 e HADS em função das características dos cuidadores e idosos assistidos. O protocolo de pesquisa foi aprovado pelo Comitê de Ética em Pesquisa. Resultados: alta morbidade e dependência para ABVD foram significativamente associadas a maiores níveis de sobrecarga do cuidador. Essas características perderam significância quando ajustado o modelo por idade do cuidador, tempo que presta o cuidado e convivência com o idoso. Conclusão: esses resultados revelam a necessidade de intervenções para garantir suporte aos cuidadores quanto a diminuição da sobrecarga relacionada ao cuidado(AU)

Objective: to analyze the association between the characteristics of elderly people and caregivers and their impact on caregiver burden. Method: in 2021, 50 pairs of informal caregivers and their elderly were evaluated through the sociodemographic and health profile, Hospital Anxiety and Depression Scale (HADS), Zarit-Brief Burden Interview (ZBI-12), and information on the degree of dependence of the elderly for basic and instrumental activities (BADL and IADL). Regression models evaluated ZBI-12 and HADS scores as a function of characteristics of caregivers and assisted elderly. The research protocol was approved by the Research Ethics Committee. Results: high morbidity and BADL dependence were significantly associated with higher levels of caregiver burden. These characteristics lost significance when we adjusted the model for the caregiver's age, time that provides care, and living with the elderly. Conclusion: these results reveal the need for interventions to guarantee support for caregivers in terms of reducing the burden related to the care(AU)

Objetivo: analizar la asociación entre las características de ancianos y sus cuidadores y el correspondiente impacto en la sobrecarga de los cuidadores. Método: en 2021, se evaluaron 50 pares de cuidadores informales y sus ancianos a través del perfil sociodemográfico, de salud, Escala de Ansiedad y Depresión Hospitalaria (HADS), Escala de Zarit Reducida para la Sobrecarga (ZBI-12) e información sobre el grado de dependencia de los ancianos respecto a actividades básicas e instrumentales (ABVD y AIVD). Modelos de regresión evaluaron las puntuaciones de ZBI-12 y HADS en función de las características de los cuidadores y ancianos asistidos. El Comité de Ética en Investigación aprobó protocolo de investigación. Resultados: la alta morbilidad y la dependencia de BADL se asociaron significativamente con niveles más altos de sobrecarga del cuidador. Estas características perdieron su importancia cuando ajustamos el modelo por la edad del cuidador, tiempo que proporciona cuidados y convivencia con los ancianos. Conclusión: estos resultados revelan la necesidad de intervenciones para garantizar apoyo a los cuidadores para reducir la sobrecarga relacionada con el cuidado(AU)

Efficacy of iSupport-Brasil for unpaid caregivers of people living with dementia: protocol for a randomized and controlled clinical trial / Eficácia do iSupport-Brasil para cuidadores informais de pessoas que vivem com demência: protocolo de um ensaio clínico randomizado e controlado

ABSTRACT. Unpaid caregivers of people living with dementia tend to suffer mental health problems as a result of the negative effects associated with the care tasks. Thus, psychosocial interventions for this population group are necessary. iSupport is an online support program for caregivers that was created by the World Health Organization. Objective: To describe the design of a randomized clinical trial to measure the efficacy of the iSupport-Brasil version on caregivers' mental health and well-being. Methods: The participants will be randomized into Intervention Group (IG) (n=195) and Control Group (CG) (n=195). For three months, the IG will access the iSupport-Brasil platform, the CG will enter the electronic page of the Brazilian Alzheimer's Association, and both groups will be emailed the preliminary version of the "Guia de cuidados para a pessoa idosa" e-book (a guide to providing care to the elderly) from the Ministry of Health. The data will be collected at three moments: baseline, and three and six months after the beginning of the intervention. Results: It is expected that it will be possible to provide diverse validity evidence about iSupport-Brasil as an online and free intervention alternative, as a preventive means and as a way to promote mental health among caregivers of people living with dementia. Conclusion: Through the evaluation protocol of this randomized clinical trial on the effects of the iSupport-Brasil program, it may become a reference for countries that plan to adapt and improve the iSupport program using digital health solutions.

RESUMO. Cuidadores informais de pessoas que vivem com demência tendem a sofrer problemas de saúde mental como resultado dos efeitos negativos associados às tarefas de cuidado. Assim, intervenções psicossociais para essa população são necessárias. O iSupport é um programa de apoio online para cuidadores criado pela Organização Mundial da Saúde. Objetivo: Descrever o desenho de um ensaio clínico randomizado para medir a eficácia da versão iSupport-Brasil na saúde mental e no bem-estar de cuidadores. Métodos: Os participantes serão randomizados em Grupo Intervenção (GI) (n=195) e Grupo Controle (GC) (n=195). Durante três meses, o GI acessará a plataforma iSupport-Brasil, o CG entrará na página eletrônica da Associação Brasileira de Alzheimer e ambos os grupos receberão por e-mail a versão preliminar do e-book Guia de cuidados para a pessoa idosa, do Ministério da Saúde. Os dados serão coletados em três momentos: linha de base, três e seis meses após o início da intervenção. Resultados: Espera-se que seja possível fornecer diversas evidências sobre os efeitos do iSupport-Brasil como alternativa de intervenção online e gratuita, de forma a promover a saúde mental entre os cuidadores de pessoas que vivem com demência. Conclusão: O protocolo de avaliação deste ensaio clínico randomizado sobre os efeitos do programa iSupport-Brasil pode se tornar uma referência para os países que planejam adaptar e melhorar esta intervenção, usando soluções digitais de saúde.

Burden and psychological symptoms on informal caregivers of the elderly in the COVID-19 pandemic.

OBJECTIVE: To evaluate the burden and psychological symptoms of informal caregivers of the elderly during the COVID-19 pandemic. METHOD: Cross-sectional study with 50 caregivers from the Gerontology Outpatient Clinic in the interior of São Paulo, evaluated in 2021 via teleconsultation by the Hospital Anxiety and Depression Scale and the Zarit-Brief Burden Interview. Poisson's multivariate regression was applied to the two instruments scores according to the set of characteristics of the participants. RESULTS: Psychological symptoms were highlighted in caregivers with longer time in exercise (p=0.01; p=0.001) and who lived in the same environment with the elderly (p=0.04; p=0.02). Burden was associated with age (p<0.001) and living with the elderly (p=0.001). CONCLUSION: There is a need for interventions that attenuate psychological symptoms and burden in older caregivers, who live with the elderly and have been working for a longer time.

Effects of concert music on cognitive, physiological, and psychological parameters in the elderly with dementia: a quasi-experimental study / Efeitos da música de concerto sobre a cognição, parâmetros fisiológicos e psicológicos em idosos com demência: estudo quase experimental

ABSTRACT. Non-pharmacological interventions, such as the use of music, have been shown to be important potential means of controlling adverse symptoms and signs resulting from chronic diseases already present in elderly patients with dementia. Objectives: The objective of this study was to analyze the effects of concert music on cognitive and physiological parameters, and behavioral and psychological symptoms in institutionalized elderly people with dementia. Methods: A descriptive-exploratory, quantitative, quasi-experimental study was conducted with 14 elderly people. They were allocated in intervention group (IG) (n=7) with eight sessions of music listening, once a week, for 2 months, and control group (CG) (n=7) with the same procedure but without listening to the music. All participants were assessed by Neuropsychiatric Inventory Questionnaire (NPI-Q) and Addenbrooke's Cognitive Examination - Revised (ACE-R) before and after the intervention. Blood pressure (BP) data were obtained; heart rate (HR) and coherence were obtained through Cardioemotion during sessions. The data were analyzed using Fisher's exact test and Student's t-test. Results: There was a predominance of female participants, who were widowed and diagnosed with Alzheimer's disease (AD) in both groups. A statistically significant reduction was found in the mean of apathy reduction (p=0.038) and the total mean of NPI-Q severity (p=0.033) (paired Student's t-test) in IG. No significant differences were found in mean level of the pre- and post-analysis variables in CG. Conclusions: Concert music had a positive effect on the behavior of institutionalized elderly. Stimuli and possibilities of improving the current behavioral conditions are observed.

RESUMO. Intervenções não farmacológicas, como o uso da música, têm-se mostrado importantes meios potenciais de controlar os sintomas e sinais adversos decorrentes das enfermidades crônicas já instaladas em idosos com demência. Objetivos: Analisar o efeito da música de concerto sobre a cognição, parâmetros fisiológicos e sintomas comportamentais e psicológicos em idosos com demência institucionalizados. Métodos: Estudo descritivo-exploratório, quantitativo, quase experimental, realizado com 14 idosos. Eles foram alocados em: Grupo Intervenção (GI) (n=7), com oito sessões de audição musical, uma vez por semana, durante dois meses; e Grupo Controle (GC) (n=7), com o mesmo procedimento, porém sem a audição da música. Todos os participantes foram avaliados pelo Neuropsychiatric Inventory Questionnaire (NPI-Q) e Addenbrooke's Cognitive Examination - Revised (ACE-R) antes e depois do período da intervenção. Foram obtidos dados de pressão arterial, frequência e coerência cardíaca por meio do cardioemotion durante as sessões. Os dados foram analisados pelos testes Exato de Fischer e t de Student. Resultados: Em ambos os grupos houve predominância de participantes do sexo feminino, estado civil de viuvez e com diagnóstico de Alzheimer. Foi encontrada redução estatisticamente significativa na média do desgaste na apatia (p=0,038) e média total do NPI-Q gravidade (p=0,033) (teste t de Student pareado) no GI. Para o GC, não foram encontradas diferenças significativas no nível médio das variáveis na pré e pós-análise. Conclusões: A música de concerto teve efeitos positivos no comportamento dos idosos institucionalizados. Nota-se que, em geral, ela trouxe estímulos e possibilidades de melhoria das condições comportamentais atuais.

Burden and psychological symptoms on informal caregivers of the elderly in the COVID-19 pandemic / Sobrecarga y síntomas psicológicos en cuidadores informales de ancianos en la pandemia de COVID-19 / Sobrecarga e sintomas psicológicos em cuidadores informais de idosos na pandemia da COVID-19

ABSTRACT Objective To evaluate the burden and psychological symptoms of informal caregivers of the elderly during the COVID-19 pandemic. Method Cross-sectional study with 50 caregivers from the Gerontology Outpatient Clinic in the interior of São Paulo, evaluated in 2021 via teleconsultation by the Hospital Anxiety and Depression Scale and the Zarit-Brief Burden Interview. Poisson's multivariate regression was applied to the two instruments scores according to the set of characteristics of the participants. Results Psychological symptoms were highlighted in caregivers with longer time in exercise (p=0.01; p=0.001) and who lived in the same environment with the elderly (p=0.04; p=0.02). Burden was associated with age (p<0.001) and living with the elderly (p=0.001). Conclusion There is a need for interventions that attenuate psychological symptoms and burden in older caregivers, who live with the elderly and have been working for a longer time.

RESUMEN Objetivo Evaluar sobrecarga y los síntomas psicológicos de cuidadores informales de ancianos durante la pandemia de COVID-19. Método Estudio transversal con 50 cuidadores del Ambulatorio de Gerontología del interior de São Paulo, evaluados en 2021 mediante teleconsulta por la Escala de Ansiedad y Depresión Hospitalaria y Entrevista de Sobrecarga de Zarit. Se aplicó la Regresión multivariada de Poisson a las puntuaciones de los dos instrumentos en función de las características de los participantes. Resultados Los síntomas psicológicos destacaron en cuidadores con mayor tiempo de ejercicio (p=0,01; p=0,001) y que vivían en mismo ambiente que lo anciano (p=0,04; p=0,02). La sobrecarga asoció con edad (p<0,001) y convivencia con ancianos (p=0,001). Conclusión Existe una necesidad de intervenciones de mitigación de los síntomas psicológicos y sobrecarga en cuidadores mayores, que viven con ancianos y realizan la función por más tiempo.

RESUMO Objetivo Avaliar sobrecarga e sintomas psicológicos dos cuidadores informais de idosos durante a pandemia da COVID-19. Método Estudo transversal com 50 cuidadores do Ambulatório de Gerontologia do interior de São Paulo, avaliados em 2021 via teleconsulta pela Escala Hospitalar de Ansiedade e Depressão e Entrevista de Sobrecarga de Zarit. A Regressão multivariada de Poisson foi aplicada nos escores dos dois instrumentos em função do conjunto de características dos participantes. Resultados Destacaram-se os sintomas psicológicos nos cuidadores com maior tempo em exercício (p=0,01; p=0,001) e que viviam no mesmo ambiente que o idoso (p=0,04; p=0,02). A sobrecarga associou-se com sua idade (p<0,001) e morar junto ao idoso (p=0,001). Conclusão Urgem intervenções atenuantes dos sintomas psicológicos e de sobrecarga nos cuidadores com idade avançada, que residem junto ao idoso e desempenham a função há maior tempo.