Promoting diverse perspectives: Addressing health disparities related to Alzheimer's and all dementias.

Dementia research lacks appropriate representation of diverse groups who often face substantial adversity and greater risk of dementia. Current research participants are primarily well-resourced, non-Hispanic White, cisgender adults who live close to academic medical centers where much of the research is based. Consequently, the field faces a knowledge gap about Alzheimer's-related risk factors in those other groups. The Alzheimer's Association hosted a virtual conference on June 14-16, 2021, supported in part by the National Institute on Aging (R13 AG072859-01), focused on health disparities. The conference was held entirely online and consisted of 2 days of core programming and a day of focused meetings centered on American Indian and Alaska Natives and on LGBTQIA+ populations. Over 1300 registrants attended discussions focused on the structural and systemic inequities experienced across diverse groups, as well as ways to investigate and address these inequities.

The (in)visible Brazilians: A perspective review on the need for brain health and dementia research with Brazilian immigrants in the United States.

Introduction: The Brazilian population in the United States (U.S.), a Latinx subgroup, is rapidly growing and aging but remains underrepresented in U.S. health research. In addition to group-specific genetic and environmental risks, Brazilian immigrants and their offspring in the U.S. likely have cumulative risks for health inequities.It is estimated that 71% of Brazilian immigrants in the U.S. are undocumented, which may limit healthcare access/utilization. Furthermore, mental health is reported as a health priority by Brazilian immigrants in the U.S., and there is a lack of research on Alzheimer's disease and related dementia (AD/ADRD) in this population. Methods: We reviewed the scientific literature using traditional (e.g., PubMed) sources and databases generated by U.S. and Brazilian governments, as well as international organizations, and press articles. Results: This perspective review lists recommendations for researchers, health providers, and policymakers to promote greater inclusion of U.S. Brazilian populations in health research and care. The review identifies research areas in need of attention to address health inequities and promote mental/brain health in Brazilian immigrants and their offspring living in the U.S. These research areas are: 1) epidemiological studies to map the prevalence and incidence of mental/brain health conditions; 2) research on aging and AD/ADRD risk factors among Brazilian populations in the U.S.; and 3) the need for greater representation of U.S-residing Brazilian population in other relevant research areas involving genetics, neuropathology, and clinical trials. Conclusions: The recommendation and research efforts proposed should help to pave the way for the development of community-engagement research and to promote mental/brain health education, improvement of mental/brain health and AD/ADRD services, and the development of culturally-informed intervention to the U.S.-residing Brazilian communities. HIGHLIGHTS: The Brazilian population in the United States is growing but is underrepresented in U.S. health research.Approximately 71% of Brazilian immigrants in the United States are undocumented, with an increased risk for health inequities.Mental health is reported as a central health priority by Brazilian immigrants in the United States.There is a lack of research on Alzheimer's disease and other dementias (ADRD) in Brazilian immigrants in the United States.Epidemiological research is needed to map the prevalence/incidence of mental health conditions and ADRD risk factors among Brazilian immigrants in the United States.

Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities-focused research.

Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.

Normative Data for the ELSA-Brasil Neuropsychological Assessment and Operationalized Criterion for Cognitive Impairment for Middle-Aged and Older Adults.

OBJECTIVES: Normative data should consider sociodemographic diversity for the accurate diagnosis of cognitive impairment. This study aims to provide normative data for a brief neuropsychological battery and present diagnostic criteria for cognitive impairment that could be used in primary care settings. METHODS: We selected 9618 Brazilian middle-aged and older adults after detailed exclusion criteria to avoid subtle cognitive impairment. We analyzed age, sex, and education influence on cognitive performance. To verify the evidence of criterion validity, we compared the cognitive performance of subjects with and without a depressive episode. Additionally, we verified the percentage of spurious scores under three different cutoffs. RESULTS: Age and education had the greatest impact on cognition. Normative scores were provided according to age and education groups. Participants with a depressive episode performed poorer than control subjects. The clinical cutoff of at least two scores below the 7th percentile revealed the adequate percentage of spurious and possible clinical performance. CONCLUSIONS: The Longitudinal Study on Adult Health (ELSA-Brasil) provided normative data based on a unique selected set of cognitively normal subjects. Normative groups were selected based on age and education, and the battery was sensitive to the presence of a depressive episode. We suggested clinical cutoffs for the tests in this battery that could be used in primary care settings to improve the accurate diagnosis of cognitive impairment.

Cross-country discrepancies on public understanding of stress concepts: evidence for stress-management psychoeducational programs.

BACKGROUND: Negative effects of stress have pose one of the major threats to the health and economic well being of individuals independently of age and cultural background. Nevertheless, the term "stress" has been globally used unlinked from scientificevidence-based meaning. The discrepancies between scientific and public stress knowledge are focus of concern and little is know about it. This is relevant since misconceptions about stress may influence the effects of stress-management psychoeducational programs and the development of best practices for interventions. The study aimed to analyze stress knowledge among the Canadian and Brazilian general public and to determine the extent to which scientific and popular views of stress differ between those countries. METHODS: We evaluated 1156 healthy participants between 18 and 88 years of age recruited from Canada (n = 502) and Brazil (n = 654). To assess stress knowledge, a questionnaire composed of questions regarding stress concepts ("stress is bad" versus "stress-free life is good") and factors capable of triggering the stress response ("novelty, unpredictability, low sense of control and social evaluative threat versus "time pressure,work overload, conflict, unbalance and children") was used. RESULTS: Both Canadian and Brazilian participants showed misconceptions about stress and the factors capable of triggering a stress response. However, the rate of misconceptions was higher in Brazil than in Canada (p < 0.05). CONCLUSION: These findings suggest a lack of public understanding of stress science and its variance according to a country's society. Psychoeducational programs and vulnerability of stress-related disorder are discussed.

Frontal assessment battery in a Brazilian sample of healthy controls: normative data / Bateria de avaliação frontal em uma amostra brasileira de controles saudáveis: dados normativos

OBJECTIVE: To show data on the performance of healthy subjects in the Frontal Assessment Battery (FAB), correlating with gender, age, education, and scores in the Mini-Mental State Examination (MMSE). METHODS: Two hundred and seventy-five healthy individuals with mean age of 66.4±10.6 years-old were evaluated. Mean total FAB scores were established according to the educational level. RESULTS: Mean total FAB scores according to the educational level were 10.9±2.3, for one to three years; 12.8±2.7, for four to seven years; 13.8±2.2, for eight to 11 years; and 15.3±2.3, for 12 or more years. Total FAB scores correlated significantly with education (r=0.47; p<0.0001) and MMSE scores (r=0.39; p<0.0001). No correlation emerged between FAB scores, age, and gender. CONCLUSION: In this group of healthy subjects, the Brazilian version of the FAB proved to be influenced by the education level, but not by age and gender.

OBJETIVO: Avaliar o desempenho de indivíduos brasileiros saudáveis na Bateria de Avaliação Frontal (FAB) correlacionado com gênero, idade, educação e escores do Exame do Mini-Mental (MMSE). MÉTODOS: Foram avaliados 275 controles saudáveis com média de idade de 66,4±10,6 anos. Os escores médios foram estabelecidos de acordo com o nível educacional. RESULTADOS: Os escores médios da FAB em relação ao nível educacional foram 10,9±2,3 para um a três anos; 12,8±2,7 para quatro a sete anos; 13,8±2,2 para oito a 11 anos e 15,3±2,3 para 12 ou mais anos. Os escores totais da FAB se correlacionaram significativamente com o nível educacional (r=0,47; p<0,0001) e com os escores do MMSE (r=0,39; p<0,0001). Não foram observadas correlações significativas entre os escores da FA, o gênero e a idade. CONCLUSÃO: Na presente amostra, a versão brasileira da FAB sofreu influência do nível de escolaridade, mas não da idade e do gênero.

Frontal assessment battery in a Brazilian sample of healthy controls: normative data.

OBJECTIVE: To show data on the performance of healthy subjects in the Frontal Assessment Battery (FAB), correlating with gender, age, education, and scores in the Mini-Mental State Examination (MMSE). METHODS: Two hundred and seventy-five healthy individuals with mean age of 66.4 ± 10.6 years-old were evaluated. Mean total FAB scores were established according to the educational level. RESULTS: Mean total FAB scores according to the educational level were 10.9 ± 2.3, for one to three years; 12.8 ± 2.7, for four to seven years; 13.8 ± 2.2, for eight to 11 years; and 15.3 ± 2.3, for 12 or more years. Total FAB scores correlated significantly with education (r=0.47; p<0.0001) and MMSE scores (r=0.39; p<0.0001). No correlation emerged between FAB scores, age, and gender. CONCLUSION: In this group of healthy subjects, the Brazilian version of the FAB proved to be influenced by the education level, but not by age and gender.

The assessment and management of pain in the demented and non-demented elderly patient.

Persistent pain is a frequent health problem in the elderly. Its prevalence ranges from 45% to 80%. Chronic diseases, such as depression, cardiovascular disease, cancer and osteoporosis have a higher prevalence in aged individuals and increase the risk of developing chronic pain. The presence of pain is known to be associated with sleep disorders in these patients, as well as functional impairment, decreased sociability and greater use of the health system, with consequent increase in costs. Alzheimer's disease patients seem to have a normal pain discriminative capacity and they may probably have weaker emotional and affective experience of pain when compared to other types of dementia. Many patients have language deficits and thus cannot properly describe its characteristics. In more advanced cases, it becomes even difficult to determine whether pain is present or not. Therefore, the evaluation of these patients should be performed in a systematic way. There are three ways to measure the presence of pain: by direct questioning (self-report), by direct behavioral observation and by interviews with caregivers or informants. In recent years, many pain scales and questionnaires have been published and validated specifically for the elderly population. Some are specific to patients with cognitive decline, allowing pain evaluation to be conducted in a structured and reproducible way. The next step is to determine the type of painful syndrome and discuss the bases of the pharmacological management, the use of multiple medications and the presence of comorbidities demand the use of smaller doses and impose contra-indications against some drug classes. A multiprofessional approach is the rule in the management of these patients.

Cuidadores de idosos com demência: perfil sociodemográfico e impacto diário / Caregivers of elderlies with dementia: their social and demographic profile and daily impact

Os cuidadores/familiares de idosos com doença de Alzheimer (DA) são responsáveis pela assistência e efetiva realização das atividades cotidianas dos indivíduos com DA à medida que a doença progride. O desgaste físico, emocional e financeiro que este tipo de cuidado acarreta, para os cuidadores/familiares, tem um impacto direto na qualidade do cuidado oferecido, no desgaste do cuidador/familiar e em sua rotina diária. O objetivo do presente artigo é apresentar o perfil sociodemográfico de um grupo de cuidadores/familiares e o impacto deste cuidado em sua rotina. Foram avaliados, através de um questionário semiestruturado, 50 cuidadores/familiares de idosos com DA, segundo os critérios da American Psychiatric Association (APA, 1994), atendidos no Serviço de Atendimento em Demência (SADe) do Núcleo Interprofissional de Pesquisa e Atendimento no Envelhecimento da Universidade Federal de São Paulo - Campus Baixada Santista e no Ambulatório de Neurologia Cognitiva e do Comportamento da Divisão de Clínica Neurológica do Hospital das Clínicas da FMUSP. Os resultados apontam que os cuidadores/familiares são, na maioria, familiares de primeiro grau e do sexo feminino, dedicam significativo número de horas a esta atividade, o que gera impacto socioeconômico e psíquico negativo. O conhecimento destas características nos permite refletir sobre a proposição e o estabelecimento de políticas públicas visando o oferecimento de serviços de apoio, suporte, intervenção e orientação a esses cuidadores/familiares.

The caregivers/family members of elderly with Alzheimer's disease (AD) are responsible for assisting these individuals in their performance of instrumental and basic daily activities during the course of the disease. The financial, emotional and physical stress that caregivers undergo results in a huge impact in the offered quality of care, the distress of the caregiver / family and in their daily routine. The objective of the present study is to outline the social and demographic profile of the caregiver of elderly with AD and the impact of the care on their daily routine. Fifty caregivers of elderly with AD, according to American Psychiatric Association (APA, 1994), were evaluated through semi structured questionnaire at the Behavioral and Cognitive Neurology Unit, Department of Neurology, University of São Paulo School of Medicine and Unit Care of Dementia of Inter Professional Nucleus of Aging Research and Care, Federal University of São Paulo - Campus Baixada Santista. In our research, the majority of caregivers are female close relatives that spend quite a lot of time doing this activity, which has a negative psychic and financial impact. The acknowledgement of these characteristics let us reflect on the proposition and establishment of public polices aiming the services to support, intervene and guide these caregivers/family members.

Functional disability in Alzheimer disease: a validation study of the Brazilian version of the Disability Assessment for Dementia (DAD-Br).

BACKGROUND: The assessment of activities of daily living (ADL) is important both for the diagnosis and staging of dementia. The objective of this study was to verify the applicability and validity of the Brazilian version of the Disability Assessment for Dementia (DAD-Br). METHODS: The DAD was applied to caregivers of 89 patients with probable Alzheimer disease (AD) and to 40 elderly individuals without cognitive impairment (controls). We assessed the construct validity of the scale and its diagnostic accuracy (sensitivity, specificity, and predictive value). In addition, intergroup and intragroup analyses were conducted to characterize patient performance on basic and instrumental ADL and to determine underlying deficits (initiation, planning, or effective execution). RESULTS: AD patients and controls had mean ages of 76.4+/-6.9 years and 74.5+/-7.3 years (P=0.08), respectively. Mean Mini-Mental State Examination scores were 17.4+/-5.0 and 26.1+/-5.1 (P<0.001) and scores on the DAD were 68.4+/-19.0 and 99.8+/-0.9 (P<0.001), for patients and controls, respectively. The DAD scale showed good internal consistency (Cronbach alpha=0.77) and correlation with the Mini-Mental State Examination (r=0.44; P<0.001). The AD group did better on basic ADL than on instrumental ADL (P<0.001). As expected, controls did not exhibit significant deficits on the items evaluated. CONCLUSION: The Brazilian version of the DAD is an adequate and reliable tool for assessing functional ability in AD patients.

[Cross-cultural adaptation of the Disability Assessment for Dementia (DAD)]. / Adaptação transcultural da escala de avaliação de incapacidade em demência (Disability Assessment For Dementia--DAD).

The original version of the Disability Assessment for Dementia (DAD) was translated into Portuguese and back translated to English. The divergences of translation were identified and discussed, resulting in a version that was used in a preliminary investigation for cross-cultural adaptation. The final version was administered to 29 patients with mild to moderate probable Alzheimer's disease. The correlation coefficients of DAD were 0.929 and 0.932 for the inter-examiner and test-retest evaluations respectively. The reliability indexes were also high (Kappa 0.72 p<0.001 inter-examiners and 0.85 p<0.001 test-retest). The Brazilian version of DAD was easy to administer and had good reliability to assess the functional status of demented patients. It will contribute to the follow-up of these patients in our population. Moreover, it can be used in transcultural studies on functional abilities in dementia.

Adaptação transcultural da escala de avaliação de incapacidade em demência (Disability Assessment For Dementia - DAD) / Cross-cultural adaptation of the disability assessment for dementia (DAD)

A versão original da Escala de Avaliação de Incapacidade em Demência (Disability Assessment for Dementia, DAD) foi traduzida para a língua portuguesa e retrotraduzida para o inglês. Divergências de tradução foram identificadas e discutidas, chegando-se a uma versão que foi submetida a pré-teste para adaptação sócio-cultural. A versão final foi administrada a amostra de 29 pacientes com doença de Alzheimer provável de leve a moderada. Os coeficientes de correlação da DAD foram 0,929 e 0,932 nas avaliações inter e intra-examinadores respectivamente. Os índices de confiabilidade também foram elevados (Kappa=0,72; p<0,001 inter-examinadores e Kappa=0,85; p<0,001 intra-examinadores). A versão brasileira da escala DAD mostrou-se um instrumento de fácil aplicação e boa confiabilidade para avaliação funcional de pacientes com demência e poderá contribuir para o acompanhamento desses pacientes em nosso meio. Esta versão também poderá ser utilizada em estudos transculturais sobre habilidades funcionais de pacientes com demência.

The original version of the Disability Assessment for Dementia (DAD) was translated into Portuguese and back translated to English. The divergences of translation were identified and discussed, resulting in a version that was used in a preliminary investigation for cross-cultural adaptation. The final version was administered to 29 patients with mild to moderate probable Alzheimer's disease. The correlation coefficients of DAD were 0.929 and 0.932 for the inter-examiner and test-retest evaluations respectively. The reliability indexes were also high (Kappa 0.72 p<0.001 inter-examiners and 0.85 p<0.001 test-retest). The Brazilian version of DAD was easy to administer and had good reliability to assess the functional status of demented patients. It will contribute to the follow-up of these patients in our population. Moreover, it can be used in transcultural studies on functional abilities in dementia.

Brazilian version of the Frontal Assessment Battery (FAB): Preliminary data on administration to healthy elderly.

The Frontal Assessment Battery (FAB) has been proposed as a diagnostic tool for patients with frontal lobe syndrome. OBJECTIVES: To present the Brazilian version of the FAB and to show preliminary data on the performance of healthy elderly in the battery, correlating with age, education and scores in the Mini- Mental State Examination (MMSE). METHODS: Forty-eight healthy elderly individuals (34 female/14 male) were evaluated, aged 69.3±6.1 years and with educational level=8.0±5.6 years. The subjects were submitted to the MMSE, the Cornell depression scale and the FAB, in which scores were determined for each item and for the total scale. All individuals had to attain above education adjusted cut-off scores in the MMSE and =7 points on the Cornell depression scale. Correlations were calculated between FAB total scores and age, educational level and MMSE scores, as well as between FAB items and education. RESULTS: The mean score ±SD in the FAB was 13.0±2.3(7 to 18). Total FAB scores correlated significantly with education (r=0.37; p=0.01) and MMSE scores (r=0.46; p=0.001). No correlation emerged between FAB scores and age. The mean score ±SD of the MMSE was 27.4 ± 1.8. Considering the six FAB items separately, two of them (similarities and conflicting instructions) correlated significantly with educational. CONCLUSIONS: In this group of healthy elderly, the Brazilian version of the FAB proved to be influenced by education, but not age.

A Bateria de Avaliação Frontal (BAF) foi proposta recentemente como instrumento diagnóstico para pacientes com síndrome frontal. OBJETIVOS: Apresentar a versão brasileira da BAF e dados preliminares do desempenho de idosos saudáveis na bateria, e sua correlação com a idade, nível educacional e escores no Mini- Exame do Estado Mental (MEEM). MÉTODOS: Foram avaliados 48 idosos saudáveis (34 mulheres/14 homens), com idade média=69,3±6,1 anos e escolaridade média=8,0±5,6 anos. Todos foram submetidos ao MEEM, à escala de Depressão de Cornell e à BAF, com escores determinados para cada item e no total. Os participantes apresentaram desempenho acima de valores ajustados para a escolaridade no MEEM e =7 pontos na escala de Depressão de Cornell. Foram calculadas correlações entre o escore total da BAF e as variáveis idade, escolaridade e escore do MEEM, como também a correlação entre os itens da BAF e a escolaridade. RESULTADOS: O escore médio ±DP na BAF foi 13,0±2,3 (7-18). Os escores totais da BAF se correlacionaram significativamente com a escolaridade (r=0,37; p=0,01) e com os escores do MEEM (r=0,46; p=0,001). Não foi observada correlação entre a BAF e a idade. O escore médio do MEEM foi 27,4 ± 1,8. A análise separada dos itens da BAF mostrou que dois deles (similaridades e instruções conflitantes) se correlacionaram significativamente com a escolaridade. CONCLUSÕES: Neste grupo de idosos saudáveis, a versão brasileira da BAF demonstrou ser influenciada pela escolaridade, mas não pela idade.

Cross-cultural adaptation of the quality of life assessment scale on Alzheimer disease.

OBJECTIVE: To present the internal validation of the quality of life (QOL) evaluation scale for patients with Alzheimer's disease (AD) and their caregivers/family members, proposed by Logsdon et al. METHOD: The scale was adapted through translation, back translation and equivalence evaluation. The Portuguese version was administered to a sample of 40 patients with mild to moderate AD according to NINCDS ADRDA and DSM-III-R criteria, and also to their respective caregivers/family members. RESULTS: The reliability of the instrument was excellent, both in the intra and the inter-examiner test-retest. The correlation coefficients for the intra-examiner assessment were 0.87/0.95/0.95 (p < 0.001)) for the patient, family and caregiver versions, respectively. The correlation coefficients for the inter-examiner assessment were 0.76/0.96/0.93 (p < 0.001) for the patients, family and caregiver versions, respectively. The reliability was excellent for both the patient and the relatives' versions in relation to the patient's QOL (alpha = 0.81 and 0.85, respectively), and also in relation to the caregiver's QOL (alpha = 0.84). CONCLUSION: The adapted version of the instrument proved to be straightforward and brief, presenting excellent stability and reliability. The Portuguese version can be obtained by contacting the first author.

Cross-cultural adaptation of the quality of life assessment scale on Alzheimer disease

OBJETIVO: Apresentar os dados de validação interna da escala de qualidade de vida (QV) para pacientes com doença de Alzheimer (DA) e seus respectivos cuidadores/familiares, proposta por Logsdon e col. MÉTODO: A escala foi adaptada seguindo metodologia que envolveu a tradução, retrotradução e avaliações de equivalência. A versão em português foi ministrada a 40 pacientes com DA provável, segundo os critérios do NINCDS ADRDA, e de intensidade leve a moderada, segundo os critérios do DSM-III-R e a seus respectivos cuidadores/familiares. RESULTADOS: A estabilidade do instrumento foi excelente no teste-reteste intra e inter-examinador. Os índices de correlação encontrados na avaliação intra-examinador foram 0,87/0,95/0,95 (p<0,001) para as versões do paciente, do familiar e do cuidador, respectivamente. Na avaliação inter-examinador os índices de correlação foram 0,76/0,96/0,93 (p<0,001). A confiabilidade foi excelente para as versões do paciente e do familiar em relação à QV do paciente (alfa=0,81 e 0,85, respectivamente) e com relação a QV do cuidador (alfa=0,84). CONCLUSÃO: O instrumento mostrou-se de fácil e rápida aplicação, apresentando excelente estabilidade e confiabilidade após sua adaptação. A versão em português pode ser obtida com a primeira autora.

Estudo epidemiologico populacional de demencia na cidade de Catanduva, estado de Sao Paulo, Brasil / Population epidemiologic study of dementia in Catanduva city: state of Sao Paulo, Brazil

Foram avaliadas 1.660 pessoas com idade igual ou superior a 65 anos, residentes na cidade de Catanduva, estado de Sao Paulo, correspondendo a aproximadamente 25 por cento da populacao idosa, em projeto desenvolvido pela Faculdade de Medicina de Catanduva e pela Faculdade de Medicina da Universidade de Sao Paulo. Apos exames realizados em tres fases sucessivas, foram diagnosticados 118 casos de demencia, correspondendo a prevalencia de 7,1 por cento. Entre os diagnosticos nosologicos mais frequentes, doenca de Alzheimer foi responsavel por 64 casos (54,1 por cento), demencia vascular por 11 (9,3 por cento) e doenca de Alzheimer associada a demencia vascular por 17 casos (14,4 por cento). Constatou-se que a prevalencia de demencia foi de 1,3 por cento dos 65 aos 69 anos, elevando-se para 36,9 por cento nas idades superiores a 84 anos...