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.

Efficacy of iSupport-Brasil for unpaid caregivers of people living with dementia: protocol for a randomized and controlled clinical trial.

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.

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.

Social support perceived by elderly people in social vulnerability according to family functionality: a cross-sectional study.

OBJECTIVE: To compare the social support as perceived by elderly persons in a context of social vulnerability according to family functionality. METHOD: A cross-sectional study using a quantitative approach, carried out in São Carlos-SP, with 123 elderly people living in a context of high social vulnerability. The sample was divided into two groups: good family functionality and moderate/severe family dysfunction. Data was collected on sociodemographic characteristics, family functionality (Family APGAR) and social support (Medical Outcomes Study Social Support Scale). The Mann-Whitney, Chi-square and Fisher's exact statistical tests were used. RESULTS: There was a statistically significant difference between social support and family functionality (p < 0.05). The group with good family functionality obtained higher median social support scores: affective 100.00; material 95.00; information 90.00; emotional 90.00; positive social interaction 85.00; when compared to the group with moderate/severe family dysfunction: affective 86.67; material 87.50; information 70.00; emotional 65.00; positive social interaction 65.00. CONCLUSION: Elderly persons living in dysfunctional families have less perceived social support when compared to those living in families with good family functionality.

Cognitive performance, burden and stress in aged caregivers of older adults with and without cognitive impairment.

There is an increasing number of aged people who provide care for other older people. Commonly existing burden and stress can change the forms of cognitive performance depending on the context of the aged caregivers. Objective: To compare the cognitive performance, burden and stress of aged caregivers of older adults with and without signs of cognitive impairment. Methods: A cross-sectional and quantitative study conducted with 205 aged caregivers of older adults with signs of cognitive impairment and 113 aged caregivers of older adults without signs of cognitive impairment treated in Primary Health Care. They were evaluated for sociodemographic characteristics, cognition, burden, and stress. Descriptive (Kolmogorov-Smirnov test) and comparative (Student's t-test and Pearson's χ² test) analyses were performed. Results: Aged caregivers of older adults with signs of cognitive impairment were older, had lower schooling levels, and a higher percentage of daily care hours compared to the aged caregivers of older adults without signs of cognitive impairment. Regarding cognitive performance, the means were lower for all domains. In addition, this same group had higher scores, with a statistically significant difference for perceived stress and burden. Conclusion: Aged caregivers of older adults with signs of cognitive impairment showed lower cognitive performance, as well as higher burden and stress levels. These findings guide the planning of interventions with aged caregivers in the Primary Health Care.

Nota-se um crescente número de idosos que prestam cuidados a outros idosos. A sobrecarga e o estresse comumente existentes podem afetar de formas diferentes o desempenho cognitivo, a depender do contexto desses idosos cuidadores. Objetivo: Comparar o desempenho cognitivo, a sobrecarga e o estresse de idosos cuidadores de idosos com e sem indícios de alterações cognitivas. Métodos: Estudo transversal e quantitativo realizado com 205 idosos cuidadores de idosos com indícios de alterações cognitivas e 113 idosos cuidadores de idosos sem indícios de alterações cognitivas atendidos na Atenção Primária à Saúde. Eles foram avaliados quanto às características sociodemográficas, cognição, sobrecarga e estresse. Análises descritivas (teste de Kolmogorov-Smirnov) e comparativas foram realizadas (teste t de Student e χ² de Pearson). Resultados: Os idosos cuidadores de idosos com indícios de alterações cognitivas eram mais velhos, com menor escolaridade e maior percentual de horas diárias de cuidado em comparação aos idosos cuidadores de idosos sem indícios de alterações cognitivas. Já quanto ao desempenho cognitivo, as médias foram inferiores para todos os domínios. Além disso, esse mesmo grupo apresentou maior pontuação, com diferença estatisticamente significante, para o estresse percebido e para a sobrecarga. Conclusão: Os cuidadores de idosos com indícios apresentaram menor desempenho cognitivo e maiores níveis de sobrecarga e estresse. Tais achados norteiam o planejamento de intervenções voltadas aos idosos cuidadores na Atenção Primaria à Saúde.

Depressive symptoms and sleep in aged caregivers in a context of high social vulnerability.

OBJECTIVE: To evaluate the relationship between depressive symptoms and sleep quality in aged caregivers of elderly people, in a context of high social vulnerability. METHODS: A Cross-sectional study conducted between July 2019 and March 2020 with 65 aged caregivers of elderly people that were treated in five Family Heath Units from São Carlos, São Paulo. Instruments to characterize the caregivers and to evaluate the depressive symptoms and sleep quality were used in data collection. The Kruskal Wallis and Spearman Correlation tests were adopted. RESULTS: 73.9% of the caregivers presented poor sleep quality and 69.2% did not have depressive symptoms. In the caregivers with severe depressive symptoms, the mean sleep quality score was 11.4; in those with mild depressive symptoms, it was 9.0; and in those without depressive symptoms, it was 6.4. There was a direct and moderate correlation between sleep quality and depressive symptoms. CONCLUSION: There is a relationship between depressive symptoms and sleep quality in aged caregivers.

Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: a cross-sectional study.

The task of caring can negatively affect the physical and mental health; therefore, it is important to understand which factors are associated with burden in older caregivers of older adults. Objective: This study aimed to explore sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers of older adults. Methods: This is a cross-sectional study developed with 349 older caregivers who were registered at a Family Health Unit of a city in the state of São Paulo, Brazil. Household interviews were conducted and data were collected on the sociodemographic (profile, family income), clinical (self-reported pain, sleep, frailty), and psychosocial (burden, family functioning, depressive symptoms, stress) characteristics of the caregivers as well as dependence on activities of daily living and cognition in the care recipients. Results: Women predominated in the sample (76.5%) and mean age was 69.5 years. The mean burden score was 18.06 points, with 47.9% above the cutoff of 16 points, denoting excessive burden. The bivariate model revealed associations between burden and financial insufficiency, family dysfunction, difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity among the caregivers as well as worse functional and cognitive performance in the care recipients. The controlled model revealed an association between burden and depressive symptoms (ß=16.75; 95%CI 1.80-31.68). Conclusions: We identified an association between burden and depressive symptoms, underscoring the need for the planning and implementation of specific actions directed at caregivers in order to minimize the impact on health and to improve the quality of life.

A tarefa de cuidar pode afetar negativamente a saúde física e mental, sendo importante compreender quais os fatores associados à sobrecarga em idosos cuidadores de idosos. Objetivo: Explorar os fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga em idosos cuidadores de idosos. Métodos: Estudo transversal desenvolvido com 349 idosos cuidadores cadastrados nas unidades de Saúde da Família de um município do interior paulista. Foram realizadas entrevistas domiciliares e coletados dados sobre as informações sociodemográficas (perfil, renda familiar), clínicas (dor autorrelatada, sono, fragilidade) e psicossociais (sobrecarga, funcionalidade familiar, sintomas depressivos, estresse) do cuidador, bem como dados de funcionalidade e cognição dos receptores de cuidados. Resultados: Houve prevalência do sexo feminino (76,5%), com média de idade de 69,5 anos. A média do escore da sobrecarga foi 18,06 pontos, com 47,9% dos idosos cuidadores acima da nota de corte de 16 pontos. O modelo univariado revelou associação entre sobrecarga e percepção de insuficiência financeira, disfunção familiar, dificuldade de dormir, dor, estresse percebido, sintomas depressivos, fragilidade e multimorbidade, além de pior desempenho funcional e cognitivo dos idosos receptores de cuidados. No modelo controlado houve associação entre sobrecarga e sintomas de depressão (ß=16,75; intervalo de confiança ­ IC95% 1,80­31,68). Conclusão: Identificamos associação entre sobrecarga e sintomas depressivos, de modo que é necessário planejar e implementar cuidados específicos a fim de minimizar o impacto na saúde dos cuidadores e favorecer a qualidade de vida.

Performance of older adults in a digital change detection task: The role of heterogeneous education.

The influence of education on traditional paper-and-pen cognitive assessments is widely reported. However, a minimal amount of evidence is available regarding the role of education in digital tasks. This study aimed to compare the performance of older adults with different educational attainment in a digital change detection task, as well as to relate their performance on the digital task and traditional paper-based tests. Participants (n = 180) were recruited in primary health care settings from a countryside city in the state of Sao Paulo-Brazil and were assigned to three different groups according to their educational background. Traditional paper-based neuropsychological instruments (i.e., ACE-R, Digit Span, Bells test) were used in addition to a digital change detection task. There was no difference in reaction time on the change detection task between the groups; however, participants with higher educational levels performed better than illiterates or lower education groups. The digital test was correlated to ACE-R total score as well as to its language domain. Our results suggested that the performance in the digital task was different for older adults with heterogeneous educational attainment. Technology is a promising pathway in cognitive assessment, and education should be considered in the interpretation of the results.

Social support perceived by elderly people in social vulnerability according to family functionality: a cross-sectional study / Apoyo social percibido por personas mayores en situación de vulnerabilidad social según la funcionalidad familiar: un estudio transversal / Apoio social percebido por pessoas idosas em vulnerabilidade social segundo a funcionalidade familiar: um estudo transversal

ABSTRACT Objective: To compare the social support as perceived by elderly persons in a context of social vulnerability according to family functionality. Method: A cross-sectional study using a quantitative approach, carried out in São Carlos-SP, with 123 elderly people living in a context of high social vulnerability. The sample was divided into two groups: good family functionality and moderate/severe family dysfunction. Data was collected on sociodemographic characteristics, family functionality (Family APGAR) and social support (Medical Outcomes Study Social Support Scale). The Mann-Whitney, Chi-square and Fisher's exact statistical tests were used. Results: There was a statistically significant difference between social support and family functionality (p < 0.05). The group with good family functionality obtained higher median social support scores: affective 100.00; material 95.00; information 90.00; emotional 90.00; positive social interaction 85.00; when compared to the group with moderate/severe family dysfunction: affective 86.67; material 87.50; information 70.00; emotional 65.00; positive social interaction 65.00. Conclusion: Elderly persons living in dysfunctional families have less perceived social support when compared to those living in families with good family functionality.

RESUMEN Objetivo: Comparar el apoyo social percibido por personas mayores en un contexto de vulnerabilidad social según la funcionalidad familiar. Método: Estudio transversal con abordaje cuantitativo, realizado en São Carlos-SP, con 123 personas mayores residentes en contexto de alta vulnerabilidad social. La muestra fue dividida en dos grupos: buena funcionalidad familiar y disfunción familiar moderada/severa. Se recogieron datos sobre características sociodemográficas, funcionalidad familiar (APGAR Familiar) y apoyo social (Escala de Apoyo Social del Medical Outcomes Study). Se utilizaron las pruebas estadísticas de Mann-Whitney, Chi-cuadrado y exacta de Fisher. Resultados: Hubo una diferencia estadísticamente significativa entre el apoyo social y la funcionalidad familiar (p<0,05). El grupo con buena funcionalidad familiar obtuvo puntuaciones medias de apoyo social más altas: afectivo 100,00; material 95,00; información 90,00; emocional 90,00; interacción social positiva 85,00; en comparación con el grupo con disfunción familiar moderada/grave: afectivo 86,67; material 87,50; información 70,00; emocional 65,00; interacción social positiva 65,00. Conclusión: Las personas mayores que viven en familias disfuncionales tienen menos apoyo social percibido, en comparación con los que viven en familias con buena funcionalidad familiar.

RESUMO Objetivo: Comparar o apoio social percebido por pessoas idosas em contexto de vulnerabilidade social segundo a funcionalidade familiar. Método: Estudo transversal de abordagem quantitativa, realizado em São Carlos-SP, com 123 idosos inseridos em contexto de alta vulnerabilidade social. A amostra foi dividida em dois grupos: boa funcionalidade familiar e disfunção familiar moderada/severa. Foram coletados dados de caracterização sociodemográfica, funcionalidade familiar (APGAR de Família) e apoio social (Escala de Apoio Social do Medical Outcomes Study). Foram utilizados os testes estatísticos Mann-Whitney, Qui-quadrado e Exato de Fisher. Resultados: Houve diferença estatisticamente significante entre apoio social e funcionalidade familiar (p < 0,05). O grupo com boa funcionalidade familiar obteve maiores escores medianos de apoio social: afetivo 100,00; material 95,00; informação 90,00; emocional 90,00; interação social positiva 85,00; quando comparado ao grupo com disfunção familiar moderada/severa: afetivo 86,67; material 87,50; informação 70,00; emocional 65,00; interação social positiva 65,00. Conclusão: Pessoas idosas que vivem em famílias disfuncionais têm menos apoio social percebido quando comparadas àquelas que vivem em famílias com boa funcionalidade familiar.

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.

Depressive symptoms and sleep in aged caregivers in a context of high social vulnerability / Síntomas depresivos y sueño de ancianos cuidadores inmersos en un contexto de alta vulnerabilidad social / Sintomas depressivos e sono de idosos cuidadores inseridos em contexto de alta vulnerabilidade social

ABSTRACT Objective: To evaluate the relationship between depressive symptoms and sleep quality in aged caregivers of elderly people, in a context of high social vulnerability. Methods: A Cross-sectional study conducted between July 2019 and March 2020 with 65 aged caregivers of elderly people that were treated in five Family Heath Units from São Carlos, São Paulo. Instruments to characterize the caregivers and to evaluate the depressive symptoms and sleep quality were used in data collection. The Kruskal Wallis and Spearman Correlation tests were adopted. Results: 73.9% of the caregivers presented poor sleep quality and 69.2% did not have depressive symptoms. In the caregivers with severe depressive symptoms, the mean sleep quality score was 11.4; in those with mild depressive symptoms, it was 9.0; and in those without depressive symptoms, it was 6.4. There was a direct and moderate correlation between sleep quality and depressive symptoms. Conclusion: There is a relationship between depressive symptoms and sleep quality in aged caregivers.

RESUMEN Objetivo: Evaluar la relación entre síntomas depresivos y calidad del sueño de ancianos cuidadores de ancianos en contexto de alta vulnerabilidad social. Métodos: Estudio transversal, realizado de Julio/2019 a Marzo/2020 con 65 ancianos cuidadores de ancianos, atendidos por cinco Unidades de Salud de la Familia, en São Carlos, São Paulo. En la recopilación de datos se utilizaron instrumentos para caracterizar a los cuidadores, evaluar los síntomas depresivos y la calidad del sueño. Se adoptaron las pruebas de Kruskal Wallis y el coeficiente de correlación de Spearman. Resultados: 73,9% de los cuidadores presentaron sueño de mala calidad y 69,2% no presentaron síntomas depresivos. En los cuidadores con síntomas depresivos graves, la puntuación media de la calidad del sueño fue de 11,4, en aquellos con síntomas depresivos leves fue de 9,0 y en aquellos sin síntomas depresivos fue de 6,4. Hubo una correlación directa y moderada entre la calidad del sueño y los síntomas depresivos. Conclusión: Existe una relación entre los síntomas depresivos y la calidad del sueño en ancianos cuidadores.

RESUMO Objetivo: Avaliar a relação entre sintomas depressivos e qualidade do sono de idosos cuidadores de idosos em contexto de alta vulnerabilidade social. Métodos: Estudo transversal, realizado de julho/2019 a março/2020 com 65 idosos cuidadores de idosos, atendidos por cinco Unidades de Saúde da Família, em São Carlos, São Paulo. Instrumentos para caracterizar os cuidadores, avaliar os sintomas depressivos e a qualidade do sono foram usados na coleta de dados. Os testes Kruskal Wallis e Correlação de Spearman foram adotados. Resultados: 73,9% dos cuidadores apresentaram sono de má qualidade e 69,2% não apresentaram sintomas depressivos. Nos cuidadores com sintomas depressivos severos, o escore médio de qualidade do sono foi 11,4, nos com sintomas depressivos leves foi 9,0 e naqueles sem sintomas depressivos foi 6,4. Houve correlação direta e moderada entre qualidade do sono e sintomas depressivos. Conclusão: Existe relação entre sintomas depressivos e qualidade do sono em idosos cuidadores.

Cognitive performance, burden and stress in aged caregivers of older adults with and without cognitive impairment / Desempenho cognitivo, sobrecarga e estresse de idosos cuidadores de idosos com e sem alterações cognitivas

ABSTRACT. There is an increasing number of aged people who provide care for other older people. Commonly existing burden and stress can change the forms of cognitive performance depending on the context of the aged caregivers. Objective: To compare the cognitive performance, burden and stress of aged caregivers of older adults with and without signs of cognitive impairment. Methods: A cross-sectional and quantitative study conducted with 205 aged caregivers of older adults with signs of cognitive impairment and 113 aged caregivers of older adults without signs of cognitive impairment treated in Primary Health Care. They were evaluated for sociodemographic characteristics, cognition, burden, and stress. Descriptive (Kolmogorov-Smirnov test) and comparative (Student's t-test and Pearson's χ² test) analyses were performed. Results: Aged caregivers of older adults with signs of cognitive impairment were older, had lower schooling levels, and a higher percentage of daily care hours compared to the aged caregivers of older adults without signs of cognitive impairment. Regarding cognitive performance, the means were lower for all domains. In addition, this same group had higher scores, with a statistically significant difference for perceived stress and burden. Conclusion: Aged caregivers of older adults with signs of cognitive impairment showed lower cognitive performance, as well as higher burden and stress levels. These findings guide the planning of interventions with aged caregivers in the Primary Health Care.

RESUMO. Nota-se um crescente número de idosos que prestam cuidados a outros idosos. A sobrecarga e o estresse comumente existentes podem afetar de formas diferentes o desempenho cognitivo, a depender do contexto desses idosos cuidadores. Objetivo: Comparar o desempenho cognitivo, a sobrecarga e o estresse de idosos cuidadores de idosos com e sem indícios de alterações cognitivas. Métodos: Estudo transversal e quantitativo realizado com 205 idosos cuidadores de idosos com indícios de alterações cognitivas e 113 idosos cuidadores de idosos sem indícios de alterações cognitivas atendidos na Atenção Primária à Saúde. Eles foram avaliados quanto às características sociodemográficas, cognição, sobrecarga e estresse. Análises descritivas (teste de Kolmogorov-Smirnov) e comparativas foram realizadas (teste t de Student e χ² de Pearson). Resultados: Os idosos cuidadores de idosos com indícios de alterações cognitivas eram mais velhos, com menor escolaridade e maior percentual de horas diárias de cuidado em comparação aos idosos cuidadores de idosos sem indícios de alterações cognitivas. Já quanto ao desempenho cognitivo, as médias foram inferiores para todos os domínios. Além disso, esse mesmo grupo apresentou maior pontuação, com diferença estatisticamente significante, para o estresse percebido e para a sobrecarga. Conclusão: Os cuidadores de idosos com indícios apresentaram menor desempenho cognitivo e maiores níveis de sobrecarga e estresse. Tais achados norteiam o planejamento de intervenções voltadas aos idosos cuidadores na Atenção Primaria à Saúde.

Change in the pattern of frailty among socially vulnerable older adults over a 36-month period and associated factors: a follow-up study / Mudança do padrão de fragilidade entre idosos socialmente vulneráveis no período de 36 meses e fatores associados: um estudo de seguimento

OBJECTIVE: To investigate changes in the frailty levels of older adults in a context of high social vulnerability. METHODS: We conducted a prospective cohort study. Data were collected from 2 surveys conducted in 2015 and 2018. The frailty phenotype and sociodemographic and health characterization instruments were used. Descriptive statistical analysis was performed, including non-parametric tests, test for equality of proportions, and multivariate multinomial logistic regression. The use of the database was authorized, and the research was approved by the Ethics Committee. RESULTS: In 2015, 346 community-dwelling older adults participated in the study. After 36 months, a final sample of 223 participants was obtained. In 2015, the prevalence of non-frail, pre-frail, and frail older adults was 13.0%, 56.5%, and 30.5%, respectively. In 2018, 22.9% were non-frail, 56.0% were pre-frail, and 21.1% were frail. Higher education and better quality of life reduced the likelihood of becoming pre-frail and frail, respectively. CONCLUSION: There was a change in the pattern of frailty among socially vulnerable older adults over a 36-month period.

OBJETIVO: Verificar alterações nos níveis de fragilidade de pessoas idosas em contexto de alta vulnerabilidade social. METODOLOGIA: Trata-se de um estudo de coorte prospectivo. Foram coletados dados de dois inquéritos realizados em 2015 e 2018. Utilizou-se o Fenótipo de Fragilidade e instrumentos de caracterização sociodemográfica e de saúde. Análises estatísticas descritivas foram realizadas, incluindo testes não-paramétricos, teste de igualdade de proporções e regressão logística multinomial multivariada. O uso do banco de dados foi autorizado, e a pesquisa foi aprovada pelo Comitê de Ética. RESULTADOS: Em 2015, 346 idosos comunitários participaram do estudo. Após o período de 36 meses, obteve-se uma amostra final de 223 participantes. Em 2015, a prevalência de não frágeis, pré-frágeis e frágeis foi de 13,0, 56,5 e 30,5%, respectivamente. Em 2018, 22,9% eram não frágeis, 56,0% pré-frágeis e 21,1% frágeis. Maior escolaridade e qualidade de vida diminuíram a probabilidade de se tornar pré-frágil e frágil, respectivamente. CONCLUSÃO: Observou-se uma mudança do padrão de fragilidade entre idosos socialmente vulneráveis no período de 36 meses.

Qualidade de vida e apoio social de pessoas idosas cuidadoras e receptoras de cuidado em alta vulnerabilidade social / Quality of life and social support of older adults caregivers and care recipients in high social vulnerability

Resumo Objetivo comparar a qualidade de vida e o apoio social entre pessoas idosas cuidadoras e receptoras de cuidado. Método estudo observacional, transversal e quantitativo, realizado com 112 pessoas idosas cadastradas em cinco Unidades de Saúde da Família em contexto de alta vulnerabilidade social em um município do interior paulista, Brasil. Foram avaliadas variáveis sociodemográficas, de cuidado e de saúde, apoio social pela Escala de Apoio Social do Medical Outcomes Study e qualidade de vida pelo WHOQOL-bref e WHOQOL-old. Para a análise de dados foram utilizados os testes qui-quadrado de Pearson, Mann-Whitney e correlação de Spearman. Resultados houve diferença significativa entre os participantes para apoio material (p=0,004) e domínio físico da escala de qualidade de vida (p=0,002). Pessoas idosas cuidadoras têm menores escores de apoio material e melhor percepção do domínio físico da escala de qualidade de vida quando comparadas às receptoras de cuidado. Ademais, observou-se correlação direta e moderada entre qualidade de vida e apoio social de pessoas idosas cuidadoras (p<0,001), ou seja, quanto maior a pontuação obtida na escala de apoio social, maior também será a pontuação na escala de qualidade de vida. Conclusão pessoas idosas cuidadoras apresentaram menores escores de apoio material e melhor percepção do domínio físico da escala de qualidade de vida em comparação às receptoras de cuidado. Ações relativas à ampliação da quantidade de relacionamentos significativos dos cuidadores pode ser útil para melhorar o apoio social, com consequente melhora dos demais aspectos envolvidos na qualidade de vida.

Abstract Objective to compare quality of life and social support between older adults caregivers and care recipients. Method observational, cross-sectional and quantitative study, carried out with 112 older adults registered in five Family Health Units in a context of high social vulnerability in a city in the interior of São Paulo, Brazil. Sociodemographic, care and health variables, social support by the Medical Outcomes Study Social Support Scale and quality of life by the WHOQOL-bref and WHOQOL-old were evaluated. For data analysis, Pearson's Chi-Square, Mann-Whitney and Spearman's Correlation tests were used. Results There was a significant difference between the participants for material support (p=0.004) and physical domain of the quality of life scale (p=0.002). Older adults caregivers have lower material support scores and better perception of the physical domain of the quality of life scale when compared to care recipients. Furthermore, there was a direct and moderate correlation between quality of life and social support of older adults (p<0.001), that is, the higher the score on the social support scale, the higher the score on the quality of life scale. Conclusion adults caregivers presented lower material support scores and better perception of the physical domain of the quality of life scale compared to care receptors. Actions related to expanding the amount of significant relationships of caregivers can be useful for improving social support, with consequent improvement of the other aspects involved in quality of life.

Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: a cross-sectional study / Fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga de idosos cuidadores de idosos: um estudo transversal

ABSTRACT The task of caring can negatively affect the physical and mental health; therefore, it is important to understand which factors are associated with burden in older caregivers of older adults. Objective: This study aimed to explore sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers of older adults. Methods: This is a cross-sectional study developed with 349 older caregivers who were registered at a Family Health Unit of a city in the state of São Paulo, Brazil. Household interviews were conducted and data were collected on the sociodemographic (profile, family income), clinical (self-reported pain, sleep, frailty), and psychosocial (burden, family functioning, depressive symptoms, stress) characteristics of the caregivers as well as dependence on activities of daily living and cognition in the care recipients. Results: Women predominated in the sample (76.5%) and mean age was 69.5 years. The mean burden score was 18.06 points, with 47.9% above the cutoff of 16 points, denoting excessive burden. The bivariate model revealed associations between burden and financial insufficiency, family dysfunction, difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity among the caregivers as well as worse functional and cognitive performance in the care recipients. The controlled model revealed an association between burden and depressive symptoms (β=16.75; 95%CI 1.80-31.68). Conclusions: We identified an association between burden and depressive symptoms, underscoring the need for the planning and implementation of specific actions directed at caregivers in order to minimize the impact on health and to improve the quality of life.

RESUMO A tarefa de cuidar pode afetar negativamente a saúde física e mental, sendo importante compreender quais os fatores associados à sobrecarga em idosos cuidadores de idosos. Objetivo: Explorar os fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga em idosos cuidadores de idosos. Métodos: Estudo transversal desenvolvido com 349 idosos cuidadores cadastrados nas unidades de Saúde da Família de um município do interior paulista. Foram realizadas entrevistas domiciliares e coletados dados sobre as informações sociodemográficas (perfil, renda familiar), clínicas (dor autorrelatada, sono, fragilidade) e psicossociais (sobrecarga, funcionalidade familiar, sintomas depressivos, estresse) do cuidador, bem como dados de funcionalidade e cognição dos receptores de cuidados. Resultados: Houve prevalência do sexo feminino (76,5%), com média de idade de 69,5 anos. A média do escore da sobrecarga foi 18,06 pontos, com 47,9% dos idosos cuidadores acima da nota de corte de 16 pontos. O modelo univariado revelou associação entre sobrecarga e percepção de insuficiência financeira, disfunção familiar, dificuldade de dormir, dor, estresse percebido, sintomas depressivos, fragilidade e multimorbidade, além de pior desempenho funcional e cognitivo dos idosos receptores de cuidados. No modelo controlado houve associação entre sobrecarga e sintomas de depressão (β=16,75; intervalo de confiança — IC95% 1,80-31,68). Conclusão: Identificamos associação entre sobrecarga e sintomas depressivos, de modo que é necessário planejar e implementar cuidados específicos a fim de minimizar o impacto na saúde dos cuidadores e favorecer a qualidade de vida.

ISupport-Brasil: Preliminary results of the usability and acceptability assessment by caregivers of people who have dementia.

Objective: To assess usability and acceptability of iSupport-Brasil (iSupport-BR) to virtually support family caregivers of people who have dementia. Materials and methods: In the first stage, nine caregivers/former caregivers assessed the interface of the platform that hosts iSupport-BR. In the second stage, 10 caregivers assessed acceptability of the platform and answered the System Usability Scale (SUS), which varies from 0 to 100 points. A descriptive analysis of the quantitative data was performed, as well as a thematic analysis on the open questions. All the ethical aspects were respected. Results: The results of the first stage indicated a user-friendly interface of the system and relevant content of the program, with 55.6 and 77.8% of the participants assigning the maximum grade to these questions, respectively. Of the five possible points, the system's mean score was 3.7. In Stage 2, 80% of the caregivers rated the program as very useful and 100% would recommend it to other caregivers. Perception of the program's usability by the SUS scale was excellent (M = 86.5 ± 11.5). Conclusion: This research allowed elaborating the final version of iSupport-BR, considering usability and acceptability of the platform and the program for computers/notebooks, being a pioneer in evaluating it for use in smartphones. Future research studies will have to assess the effects of iSupport-BR on the caregivers' mental health.

Empathy Training for Caregivers of Older People: A Systematic Review.

OBJECTIVES: To identify empathy training models and the effects on psychological concerns in paid and unpaid caregivers of older people. METHODS: A systematic review was conducted. Searches for relevant articles were performed in the Embase, LILACS, PsycInfo, Pubmed, Scopus and Web of Science databases using the following search strategy: "Empathy AND (Education OR Training OR Intervention) AND Caregiver." No restrictions were imposed regarding language or year of publication. RESULTS: Empathy training for caregivers of older people were performed in six studies, three of which identified a significant increase in empathy levels and consequent reduction in psychological concerns. Empathy training focused on aspects of empathy and/or the caregiver had significant effects on the outcome variables. Moreover, training conducted online, by telephone and/or in person can generate satisfactory results. The other three studies that conducted training with a focus on aspects of dementia and/or old age did not present any effect on the outcome variables. CONCLUSIONS: Empathy training for caregivers of older people can increase levels of this ability, especially in the cognitive domain, as well as diminish psychological concerns caused by the negative impact of providing care. CLINICAL IMPLICATIONS: Empathy training directed at empathic abilities and/or aspects of providing care can be effective at increasing levels of this ability. Moreover, training in different care contexts can minimize the negative impacts of providing care.

Correlation of family functionality and burden of informal caregivers of hospitalized older adults.

AIM: to analyze the relationship between family functionality and burden of informal caregivers of hospitalized older people. METHODS: this is a cross-sectional study conducted with 98 informal caregivers of hospitalized older people in an inpatient unit of a large hospital in São Carlos, São Paulo. For data collection were used questionnaires to sociodemographic and care context characterization, to evaluate burden and family functionality. Descriptive analyzes and Spearman's correlation coefficient were used. RESULTS: female caregivers predominated, who took care of their parents and had no training. Approximately 59.8% of caregivers had good family functionality and 49.5% scored for mild to moderate burden. There was a negative correlation, moderate magnitude, between family functionality and burden (p<0,001). The higher the burden score, the lower the family functionality score and vice versa. CONCLUSION: caregivers with high burden had worse family functionality. Therefore, nurses need to identify such conditions early and implement assertive interventions so that the family functions as a therapeutic resource.

The association between language and recognition of facial emotional expressions in elderly individuals. / Associação entre linguagem e o reconhecimento de expressões faciais de emoções em idosos.

PURPOSE: To check the association between a good performance of language and the recognition of facial emotional expressions in elderly individuals. METHODS: Transversal study performed with 118 elderly individuals from the primary care services of health of a city in the state of São Paulo. Sociodemographic data were collected, regarding the performance of language through the domain of Addenbrooke Cognitive Examination - Revised and Recognition of Facial Emotional Expressions. The sample was divided in thirds according to the performance of language: T1 = the best, T2 = average, and T3 = the worst. The groups T1xT3 were compared regarding the performance of recognition of facial expressions of anger, disgust, fear, happiness, sadness, and surprise, and for the intensities of 40%, 60%, 80%, and 100%. The association of independent variables over the performance of language was analyzed through logistic regression. The multivariate model was built from the results of the univariate analyses and has included the continuous variables by emotion and by intensity. Age and schooling associated to the performance of language in the univariate model were included in the multivariate model in order to adjust association analyses. RESULTS: The sample was mainly female (84.7%), with an average age of 70.5 years old, and 3.5 schooling years. The variables associated to the best performance of language in comparative analysis of T1 and T3 were: surprise (OR = 1.485, IC 95% 1.194 - 1.846), and disgust (OR = 1.143, IC 95% 1.005 - 1.300). CONCLUSION: The recognition of facial emotional expressions of surprise and disgust were shown as important factors associated to the good performance of language.

OBJETIVO: Verificar a associação entre o bom desempenho de linguagem e o reconhecimento de expressões faciais de emoções em idosos. MÉTODO: Estudo transversal realizado com 118 idosos dos serviços de atenção primária à saúde de um município paulista. Foram coletados dados sociodemográficos, de desempenho da linguagem pelo domínio do Exame Cognitivo de Addenbrooke - Revisado e de Reconhecimento de Expressões Faciais de Emoções. A amostra foi dividida em tercis de acordo com o desempenho na linguagem: T1 = melhor, T2 = mediano e T3 = pior. Os grupos T1xT3 foram comparados em relação ao desempenho no reconhecimento de expressões faciais de raiva, nojo, medo, alegria, tristeza e surpresa e para as intensidades 40%, 60%, 80% e 100%. A associação das variáveis independentes sobre o desempenho de linguagem foi analisada por meio de regressão logística. O modelo multivariado foi construído a partir dos resultados das análises univariadas e incluiu as variáveis contínuas por emoção e por intensidade. Idade e escolaridade, associadas ao desempenho de linguagem no modelo univariado, foram incluídas no modelo multivariado para ajustar as análises de associação. RESULTADOS: A amostra era predominantemente feminina (84,7%), com idade média de 70,5 anos e 3,5 anos de escolaridade. As variáveis ​​associadas ao melhor desempenho de linguagem na análise comparativa de T1 e T3 foram: surpresa (OR= 1,485, IC 95% 1,194 ­ 1,846) e nojo (OR= 1,143, IC 95% 1,005 ­ 1,300). CONCLUSÃO: O reconhecimento de expressões faciais das emoções surpresa e nojo mostraram-se importantes fatores associados ao bom desempenho da linguagem.

Accumulated cognitive impairment, frailty, burden, and perceived stress and the risk of hospitalization and mortality in older caregivers.

Combination of cognitive impairment, frailty, perceived stress, and excessive burden poses a risk to the health of caregivers. Objectives: This study aimed to investigate the influence of the combination of these conditions on the occurrence of hospitalizations and deaths among older caregivers in a 4-year follow-up period. Methods: This is a longitudinal study in the communities with 351 older caregivers who underwent gerontological and geriatric evaluations in 2014 and completed cognitive (Mini-Mental State Examination), physical frailty (Cardiovascular Health Study criteria), perceived stress (Perceived Stress Scale), and care burden (Zarit Burden Interview) assessments. In 2018, data on hospitalization and mortality were collected. Results: As a result, 32 (12.6%) caregivers had deceased. Among the 228 survived caregivers who were reevaluated, 24% reported using hospital services in the previous year. Mean length of hospital stay was 3 days (range: 1-22 days). Hospitalization was associated with cognitive impairment co-occurring with frailty (p=0.05), stress (p=0.03), burden (p=0.01), and frailty co-occurring with stress (p=0.04). Considering singular effects, the mortality rate (33.3%) was higher among frail caregivers, followed by those with cognitive impairment (23.1%) and a high level of perceived stress (20.4%). Considering accumulative conditions, mortality rate (43.8%) was higher among frail older caregivers with cognitive impairment, followed by those with a high level of perceived stress and cognitive impairment (32.4%). Conclusions: The investigation of accumulated effects is important to the identification of potentially vulnerable older caregivers as well as the management and monitoring of the care, health, and independence of those who provide care for other older adults.

Comprometimento cognitivo, fragilidade, estresse e sobrecarga, combinados, podem representar maior risco à saúde dos cuidadores. Objetivos: O objetivo do estudo foi analisar a influência da combinação dessas condições na ocorrência de hospitalizações e óbitos entre idosos cuidadores em um período de seguimento de quatro anos. Métodos: Estudo longitudinal na comunidade, com 351 idosos cuidadores submetidos a avaliação gerontológico-geriátrica em 2014, composta de avaliação da cognição (Miniexame do Estado Mental), fragilidade física (critérios do Cardiovascular Health Study), estresse percebido (Escala de Estresse Percebido) e sobrecarga do cuidado (Zarit Burden Interview). Em 2018, foram coletados dados sobre admissão hospitalar e mortalidade. Resultados: Trinta e três (12,6%) cuidadores faleceram. Entre os 228 cuidadores sobreviventes, 24% relataram ter utilizado os serviços hospitalares no ano anterior. A hospitalização foi associada com comprometimento cognitivo coocorrendo com fragilidade (p=0,05), estresse (p=0,03) e sobrecarga (p=0,01), bem como fragilidade coocorrendo com estresse (p=0,04). Considerando-se os efeitos singulares, a taxa de mortalidade foi maior entre cuidadores frágeis (33,3%), seguidos daqueles com comprometimento cognitivo (23,1%) e alto nível de percepção de estresse (20,4%). Considerando-se as condições acumuladas, a mortalidade foi maior entre cuidadores idosos frágeis com comprometimento cognitivo (43,8%), seguidos por aqueles com alto nível de estresse percebido e comprometimento cognitivo (32,4%). Conclusões: A investigação dos efeitos acumulados é importante para a identificação de cuidadores de idosos potencialmente vulneráveis, bem como para o gerenciamento e o monitoramento do cuidado, para a saúde e a independência daqueles que cuidam de outros idosos.