RESUMO

Introduction: There is a growing awareness about the noxious effects of the 2019 Coronavirus Disease (COVID-19) pandemic on the mental health of the elderly. However, there is limited information from clinically driven research. The objectives of the present study were to examine the magnitude of psychiatric symptoms and to determine their association with caregiver distress, in a cross-section of community-dwelling older adults and a subsample of aging adults with Down syndrome (DS) attending a psychogeriatric service in São Paulo, Brazil. Method: Telephone-based interviews and electronically filled self-assessment questionnaires were used to collect information from patients and caregivers, addressing their impressions and concerns about the pandemic and related effects on the patient's emotional state and behavior. Clinical information was obtained from hospital charts, medical records, and psychometric tests administered through telephone interviews [Hospital Anxiety and Depression Scale (HADS) and Neuropsychiatric Inventory Questionnaire (NPI-Q)]. Results: We included 100 consecutive participants, comprising 71 older adults with psychogeriatric/neurocognitive disorders and 29 aging adults with DS. Higher HADS and NPI-Q scores were significantly associated with caregiver distress (p < 0.05) in both groups. Correlation analyses indicated strong, positive associations between caregiver burden and scores in HADS anxiety (HADS-A) and HADS depression (HADS-D) scales in the subsamples of euploid and DS subjects. Higher NPI-Q scores in the former group were also correlated with caregiver distress, with stronger associations for neuropsychiatric symptoms. Similar findings were observed among DS subjects. ANOVA tests indicated significant associations between NPI-Q scores and caregiver distress among dementia patients, as well as with HADS scores. Similar results were found after multiple linear regressions; as such, among the elderly subsample, higher scores in HADS-A (p = 0.002) and HADS-D (p = 0.001) predict a significant impact on caregiver burden (p < 0.00001, R 2 0.46); taking into consideration caregiver burden as a dependent variable and NPI-Q total score as an independent variable, we obtained significant strong prediction values for either DS (p < 0.00001, R 2 0.95) or elderly adults (p < 0.00001, R 2 0.88). Conclusion: During the COVID-19 pandemic, patients with neurocognitive disorders present with clinically relevant neuropsychiatric symptoms, with significant impact on caregiver distress. Apathy, aberrant motor behavior, sleep disorders, and psychoses were the main psychopathological domains, which had determined caregiver burden worsening.

RESUMO

OBJECTIVE: This study examined the mediating role of caregiver distress on family factors and caregiver life satisfaction among an understudied population of Parkinson's disease caregiver in Mexico. METHODS: A cross-sectional design was used to examine psychosocial factors pertinent to caregiver of individuals with Parkinson's disease ( n = 95). Guided by a caregiver stress process model, relations among family factors (e.g., cohesion, flexibility, quality of functioning), gender, distress, and satisfaction with life among caregiver were examined. Mediation analyses were performed to test the role of caregiver distress on the associations between family factors, gender, and caregiver satisfaction with life. RESULTS: Mediation models demonstrated that caregiver distress fully mediated the relation between quality of family functioning and caregiver satisfaction with life and partially mediated the association between family flexibility and caregiver satisfaction with life. Caregiver gender did not emerge as a significant covariate, and null results were found in the model examining family cohesion as a predictor. CONCLUSION: These results underscore the critical role of caregiver distress and family factors on features of caregiver well-being, notably satisfaction with life. This evidence also offers cross cultural evidence for the caregiver stress process model, which has primarily been observed in Western samples. Accordingly, the need to build and disseminate empirically supported family-based treatments that emphasize caregiver distress is warranted.

Assuntos

RESUMO

Neuropsychiatric symptoms (NPS) of dementia constitute one of the most related factors to caregiver burden and patients' early institutionalization. Few studies in Brazil have examined which symptoms are associated with higher levels of caregiver distress. OBJECTIVE: To evaluate the caregiver distress related to individual NPS in familial caregivers of patients with dementia. We also examined which caregiver and patient factors predict caregiver distress associated with NPS. METHODS: One hundred and fifty-nine familial caregiver and dementia outpatient dyads were included. The majority of the patients had a diagnosis of Alzheimer's disease (66.7%). Caregivers were assessed with a sociodemographic questionnaire, Beck Anxiety and Depression Inventories, and the Neuropsychiatric Inventory - Distress Scale. Patients were submitted to the Mini-Mental State Examination, Functional Activities Questionnaire, and the Neuropsychiatric Inventory. Spearman's rank correlation was used to assess the relationships between the continuous variables. Multiple linear regression analyses with backward stepping were performed to assess the ability of caregiver and patient characteristics to predict levels of caregiver distress associated with NPS. RESULTS: Apathy (M=1.9; SD=1.8), agitation (M=1.3; SD=1.8), and aberrant motor behavior (AMB) (M=1.2; SD=1.7) were the most distressful NPS. The frequency/severity of NPS was the strongest factor associated with caregiver distress (rho=0.72; p<0.05). CONCLUSION: The early recognition and management of apathy, agitation and AMB in dementia patients by family members and health professionals may lead to better care and quality of life for both patients and caregivers.

Os sintomas neuropsiquiátricos (SNP) da demência constituem um dos fatores mais relacionados à sobrecarga do cuidador e à institucionalização precoce do paciente. Poucos estudos brasileiros examinaram quais sintomas estão associados ao desgaste do cuidador. OBJETIVO: Avaliar o desgaste referente aos SNP individuais cuidadores familiares dos pacientes com demência. Nós também analisamos quais fatores dos pacientes e dos cuidadores constituem fortes preditores ao desgaste do cuidador. MÉTODOS: Cento e cinquenta cuidadores familiares e pacientes foram incluídos. A maioria dos pacientes possuía um diagnóstico de doença de Alzheimer (66,7%). Os cuidadores foram avaliados através de um questionário sociodemográfico, os Inventários de Ansiedade e Depressão de Beck e o Inventário Neuropsiquiátrico - Desgaste. Os pacientes foram submetidos ao Mini-Exame do Estado Mental, Escala de Atividades Funcionais e ao Inventário Neuropsiquiátrico. A correlação de Spearman foi utilizada para avaliar as relações entre as variáveis contínuas. Análises regressivas lineares múltiplas foram realizadas para analisar, dentre as variáveis dos pacientes e dos cuidadores, os fatores preditores do desgaste do cuidador. RESULTADOS: Apatia (M=1,9; DP=1,8), agitação (M=1,3; DP=1,8) e comportamento aberrante motor (CMA) (M=1,2; DP=1,7) foram os SNP mais desgastantes. A frequência/gravidade dos SNP foi o fator mais fortemente associado ao desgaste do cuidador (rho=0.72; p<0,05). CONCLUSÃO: O reconhecimento precoce e manejo da apatia, agitação e CMA nos pacientes com demência pelos familiares e profissionais de saúde possivelmente levará a uma melhor qualidade vida e cuidado para pacientes e cuidadores.

Assuntos

RESUMO

Neuropsychiatric symptoms (NPS) of dementia constitute one of the most related factors to caregiver burden and patients' early institutionalization. Few studies in Brazil have examined which symptoms are associated with higher levels of caregiver distress. OBJECTIVE: To evaluate the caregiver distress related to individual NPS in familial caregivers of patients with dementia. We also examined which caregiver and patient factors predict caregiver distress associated with NPS. METHODS: One hundred and fifty-nine familial caregiver and dementia outpatient dyads were included. The majority of the patients had a diagnosis of Alzheimer's disease (66.7%). Caregivers were assessed with a sociodemographic questionnaire, Beck Anxiety and Depression Inventories, and the Neuropsychiatric Inventory - Distress Scale. Patients were submitted to the Mini-Mental State Examination, Functional Activities Questionnaire, and the Neuropsychiatric Inventory. Spearman's rank correlation was used to assess the relationships between the continuous variables. Multiple linear regression analyses with backward stepping were performed to assess the ability of caregiver and patient characteristics to predict levels of caregiver distress associated with NPS. RESULTS: Apathy (M=1.9; SD=1.8), agitation (M=1.3; SD=1.8), and aberrant motor behavior (AMB) (M=1.2; SD=1.7) were the most distressful NPS. The frequency/severity of NPS was the strongest factor associated with caregiver distress (rho=0.72; p<0.05). CONCLUSION: The early recognition and management of apathy, agitation and AMB in dementia patients by family members and health professionals may lead to better care and quality of life for both patients and caregivers.

Os sintomas neuropsiquiátricos (SNP) da demência constituem um dos fatores mais relacionados à sobrecarga do cuidador e à institucionalização precoce do paciente. Poucos estudos brasileiros examinaram quais sintomas estão associados ao desgaste do cuidador. OBJETIVO: Avaliar o desgaste referente aos SNP individuais cuidadores familiares dos pacientes com demência. Nós também analisamos quais fatores dos pacientes e dos cuidadores constituem fortes preditores ao desgaste do cuidador. MÉTODOS: Cento e cinquenta cuidadores familiares e pacientes foram incluídos. A maioria dos pacientes possuía um diagnóstico de doença de Alzheimer (66,7%). Os cuidadores foram avaliados através de um questionário sociodemográfico, os Inventários de Ansiedade e Depressão de Beck e o Inventário Neuropsiquiátrico ­ Desgaste. Os pacientes foram submetidos ao Mini-Exame do Estado Mental, Escala de Atividades Funcionais e ao Inventário Neuropsiquiátrico. A correlação de Spearman foi utilizada para avaliar as relações entre as variáveis contínuas. Análises regressivas lineares múltiplas foram realizadas para analisar, dentre as variáveis dos pacientes e dos cuidadores, os fatores preditores do desgaste do cuidador. RESULTADOS: Apatia (M=1,9; DP=1,8), agitação (M=1,3; DP=1,8) e comportamento aberrante motor (CMA) (M=1,2; DP=1,7) foram os SNP mais desgastantes. A frequência/gravidade dos SNP foi o fator mais fortemente associado ao desgaste do cuidador (rho=0.72; p<0,05). CONCLUSÃO: O reconhecimento precoce e manejo da apatia, agitação e CMA nos pacientes com demência pelos familiares e profissionais de saúde possivelmente levará a uma melhor qualidade vida e cuidado para pacientes e cuidadores.

RESUMO

The aim of this study was to analyze the relationship between Caregiver Distress and Behavioral and Psychological Symptoms in Dementias (BPSD) in mild Alzheimers disease. Methods: Fifty patients and caregivers were interviewed using the Neuropsychiatric Inventory (NPI). Results: 96.0% of the patients had at least one BPSD. The mean NPI total score was 19.6 (SD=18.05; range=0-78) whereas the mean Caregiver Distress Index (CDI) total score was 11.5 (SD=10.41; range=0-40). For the individual symptoms, the weighted mean CDI was 2.8 (SD=1.58). All symptom CDI means were higher than 2.0 except for euphoria/elation (m=1.8; SD=1.49). There were correlations between CDI and derived measures (Frequency, Severity, FxS, and Amplitude) for all symptoms, except Disinhibition and Night-time behavior. Correlations ranged between 0.443 and 0.894, with significance at p<0.05. Conclusions: All the derived measures, including amplitude, were useful in at least some cases. The data suggests that CDI cannot be inferred from symptom presence or profile. Symptoms should be systematically investigated.

Analisar as relações entre desgaste do cuidador e Sintomas Comportamentais e Psicológicos nas Demências (SCPD) na doença de Alzheimer leve. Métodos: Cinquenta pacientes e cuidadores foram entrevistados com o Inventário Neuro-Psiquiátrico (INP). Resultados: 96,0% dos pacientes tinham pelo menos um SCPD. A média do escore total do INP foi 19,6 (dp=18,05; amplitude=0-78). A média do índice de desgaste do cuidador (IDC) foi 11,5 (dp=10,41; amplitude=0-40). Para os sintomas individuais, a média ponderada do IDC foi 2,8 (dp=1,58) (escala 0-5). Exceto para euforia/elação (m=1,8; dp=1,49), as médias dos IDC foram maiores do que 2,0. Foram encontradas correlações entre o IDC e medidas derivadas para todos os sintomas, exceto Desinibição e Sono. As correlações variaram entre 0,443 e 0,894 (p<0,05). Conclusões: Todas as medidas derivadas foram úteis em algum caso. Os dados sugerem que o IDC não pode ser inferido pela presença ou perfil dos sintomas. Antes, deve ser investigado sistematicamente.

Assuntos

RESUMO

The aim of this study was to analyze the relationship between Caregiver Distress and Behavioral and Psychological Symptoms in Dementias (BPSD) in mild Alzheimer's disease. METHODS: Fifty patients and caregivers were interviewed using the Neuropsychiatric Inventory (NPI). RESULTS: 96.0% of the patients had at least one BPSD. The mean NPI total score was 19.6 (SD=18.05; range=0-78) whereas the mean Caregiver Distress Index (CDI) total score was 11.5 (SD=10.41; range=0-40). For the individual symptoms, the weighted mean CDI was 2.8 (SD=1.58). All symptom CDI means were higher than 2.0 except for euphoria/elation (m=1.8; SD=1.49). There were correlations between CDI and derived measures (Frequency, Severity, FxS, and Amplitude) for all symptoms, except Disinhibition and Night-time behavior. Correlations ranged between 0.443 and 0.894, with significance at p<0.05. CONCLUSIONS: All the derived measures, including amplitude, were useful in at least some cases. The data suggests that CDI cannot be inferred from symptom presence or profile. Symptoms should be systematically investigated.

Analisar as relações entre desgaste do cuidador e Sintomas Comportamentais e Psicológicos nas Demências (SCPD) na doença de Alzheimer leve. MÉTODOS: Cinquenta pacientes e cuidadores foram entrevistados com o Inventário Neuro-Psiquiátrico (INP). RESULTADOS: 96,0% dos pacientes tinham pelo menos um SCPD. A média do escore total do INP foi 19,6 (dp=18,05; amplitude=0-78). A média do índice de desgaste do cuidador (IDC) foi 11,5 (dp=10,41; amplitude=0-40). Para os sintomas individuais, a média ponderada do IDC foi 2,8 (dp=1,58) (escala 0-5). Exceto para euforia/elação (m=1,8; dp=1,49), as médias dos IDC foram maiores do que 2,0. Foram encontradas correlações entre o IDC e medidas derivadas para todos os sintomas, exceto Desinibição e Sono. As correlações variaram entre 0,443 e 0,894 (p<0,05). CONCLUSÕES: Todas as medidas derivadas foram úteis em algum caso. Os dados sugerem que o IDC não pode ser inferido pela presença ou perfil dos sintomas. Antes, deve ser investigado sistematicamente.

RESUMO

Many patients with dementia live within the community supported by their family and friends. Majority of patient caregivers suffer from high levels of stress. METHODS: A quasi-experimental study, which compared the effects of nursing interventions on behavior disorders in both patients with moderate to severe dementia and their caregivers, followed over 18 months. The assessments were performed at the outpatient clinic of the Federal University of São Paulo and again at patients' homes with their primary caregiver, after informed consent form. Measurements were performed at baseline and after 18 months (pre and post-test). The instruments used were: The CDR, NPI and NPI-D; Katz Index and FAQ. Simultaneously, caregivers were enrolled onto the Dementia Education Program. RESULTS: The final sample was composed of 31 subjects, having a mean age of 77.4 y.o. (±8 SD). Nursing interventions were effective in reducing some of the behavioral disturbances (Z= -3.1; p=0.002), such as Aggression (Z= -3.7; p<0.001) and anxiety (Z= -2.3; p=0.023). Caregiver distress also reduced upon interventions (Z= -2.2; p=0.030). CONCLUSION: Our results indicate nursing interventions may be effective in reducing the frequency and severity of behavioral disorders and subjective burden among caregivers. Education Programs can improve caregiver burden through conveying information on difficulties related to the disease and how to deal with them.

Muitos pacientes com demência vivem na comunidade amparados por suas famílias e amigos. Muitos destes cuidadores sofrem de altos níveis de estresse. MÉTODOS: Estudo quase-experimental, que comparou os efeitos de intervenções de enfermagem nas alterações de comportamento de pacientes com demência moderada a grave, e seus cuidadores, acompanhados por 18 meses. As avaliações iniciais foram feitas no ambulatório de Neurologia do Comportamento da Universidade Federal de São Paulo e as subseqüentes no domicílio do paciente, com o cuidador primário, após consentimento informado. As avaliações foram realizadas na visita inicial e após 18 meses (pré e pós teste). Os instrumentos utilizados foram: CDR, INP e INP-E; Índice de Katz e QAF. Simultâneamente, os cuidadores foram incluídos no Programa de Educação em Demências. RESULTADOS: A amostra final foi composta 31 sujeitos, com idade média de 77,4 (±8 DP). As intervenções de enfermagem foram efetivas na redução de algumas alterações de comportamento (Z= ­3,1; p=0,002), como agressividades (Z= ­3,7; p<0,001) e ansiedade (Z= ­2,3; p=0,023). O estresse do cuidador também foi reduzido (Z= ­2,2; p=0,030). CONCLUSÃO: As intervenções de enfermagem podem ser efetivas na redução da severidade e da freqüência das alterações de comportamento e na sobrecarga subjetiva entre cuidadores. Programas de Educação podem melhorar a sobrecarga dos cuidadores, por oferecer informações acerca das dificuldades relacionadas à doença e como lidarem com elas.