Social representation of Alzheimer's disease for family caregivers: stressful and rewarding

OBJETIVO Conhecer o conteúdo da Representação Social (RS) dos familiares cuidadores de pacientes com doença de Alzheimer sobre a doença. MÉTODO Foram realizadas entrevistas com 26 cuidadores, analisadas pelo programa ALCESTE. RESULTADOS O conteúdo da RS estruturou-se em dois eixos temáticos denominados Cotidiano e Cuidado eConceitos e Repercussões Médicas e Emocionais . O primeiro eixo traz campos de imagens relacionadas à rotina do convívio com o familiar doente, contendo a descrição dos rituais do cuidado, as manifestações vivenciadas e as práticas utilizadas no cotidiano. O segundo é composto por aspectos subjetivos e conceituais que compõem a representação social da doença de Alzheimer, com significados relacionados ao contexto emocional, médico e biológico. CONCLUSÃO Devido à importância dos temas relacionados à dependência do paciente e às repercussões pessoais e emocionais da doença, a sobrecarga é o principal conteúdo da RS da doença de Alzheimer para os cuidadores e o conhecimento dessas RS pelos profissionais de saúde deve subsidiar o planejamento de intervenções voltadas a esse grupo.OBJECTIVE To understand the content of Social Representation (SR) of family caregivers of Alzheimer's disease patients. METHOD Interviews were conducted with 26 caregivers and analyzed by the ALCESTE software. RESULTS The SR content was structured in two thematic axes called Daily Life and Care and Medical and Emotional Concepts and Outcomes. The first axis creates images related to the routine of interaction with the sick person, and contains a description of care procedures, experiences, and practices applied every day. The second is composed of subjective and conceptual aspects that make up the social representation of Alzheimer's disease, with meanings related to the emotional, medical, and biological contexts. CONCLUSION Due to the importance of topics related to patients' dependence and the personal and emotional consequences of the disease, overload is the main content of the SR of Alzheimer's disease for caregivers, and the understanding of these SR by health professionals should support the planning of interventions addressing this group of individuals.OBJETIVO Conocer el contenido de la Representación Social (RS) de los familiares cuidadores de pacientes con enfermedad de Alzheimer acerca de la enfermedad. MÉTODO Se llevaron a cabo entrevistas con 26 cuidadores, analizadas por el programa ALCESTE. RESULTADOS El contenido de la RS se estructuró en dos ejes temáticos denominados Cotidiano y Cuidado yConceptos y Repercusiones Médicas y Emocionales . El primer eje trae campos de imágenes relacionadas con la rutina del convivio con el familiar enfermo, conteniendo la descripción de los rituales del cuidado, las manifestaciones vividas y las prácticas utilizadas en el cotidiano. El segundo está compuesto de aspectos subjetivos y conceptuales que componen la representación social de la enfermedad de Alzheimer, con significados relacionados con el contexto emocional, médico y biológico. CONCLUSIÓN En virtud de la importancia de los temas relacionados con la dependencia del paciente y las repercusiones personales y emocionales de la enfermedad, la sobrecarga es el principal contenido de la enfermedad de Alzheimer para los cuidadores y el conocimiento de dichas RS por los profesionales sanitarios debe subsidiar la planificación de intervenciones dirigidas a ese grupo

Representación social de la enfermedad de Alzheimer a familiares cuidadores : desgastador y gratificante

OBJETIVO: Conhecer o conteúdo da Representação Social (RS) dos familiares cuidadores de pacientes com doença de Alzheimer sobre a doença. MÉTODO: Foram realizadas entrevistas com 26 cuidadores, analisadas pelo programa ALCESTE. RESULTADOS: O conteúdo da RS estruturou-se em dois eixos temáticos denominados Cotidiano e Cuidado eConceitos e Repercussões Médicas e Emocionais . O primeiro eixo traz campos de imagens relacionadas à rotina do convívio com o familiar doente, contendo a descrição dos rituais do cuidado, as manifestações vivenciadas e as práticas utilizadas no cotidiano. O segundo é composto por aspectos subjetivos e conceituais que compõem a representação social da doença de Alzheimer, com significados relacionados ao contexto emocional, médico e biológico. CONCLUSÃO: Devido à importância dos temas relacionados à dependência do paciente e às repercussões pessoais e emocionais da doença, a sobrecarga é o principal conteúdo da RS da doença de Alzheimer para os cuidadores e o conhecimento dessas RS pelos profissionais de saúde deve subsidiar o planejamento de intervenções voltadas a esse grupo.OBJECTIVE: To understand the content of Social Representation (SR) of family caregivers of Alzheimer's disease patients. METHOD: Interviews were conducted with 26 caregivers and analyzed by the ALCESTE software. RESULTS: The SR content was structured in two thematic axes called Daily Life and Care and Medical and Emotional Concepts and Outcomes. The first axis creates images related to the routine of interaction with the sick person, and contains a description of care procedures, experiences, and practices applied every day. The second is composed of subjective and conceptual aspects that make up the social representation of Alzheimer's disease, with meanings related to the emotional, medical, and biological contexts. CONCLUSION: Due to the importance of topics related to patients' dependence and the personal and emotional consequences of the disease, overload is the main content of the SR of Alzheimer's disease for caregivers, and the understanding of these SR by health professionals should support the planning of interventions addressing this group of individuals.OBJETIVO: Conocer el contenido de la Representación Social (RS) de los familiares cuidadores de pacientes con enfermedad de Alzheimer acerca de la enfermedad. MÉTODO: Se llevaron a cabo entrevistas con 26 cuidadores, analizadas por el programa ALCESTE. RESULTADOS: El contenido de la RS se estructuró en dos ejes temáticos denominados Cotidiano y Cuidado yConceptos y Repercusiones Médicas y Emocionales . El primer eje trae campos de imágenes relacionadas con la rutina del convivio con el familiar enfermo, conteniendo la descripción de los rituales del cuidado, las manifestaciones vividas y las prácticas utilizadas en el cotidiano. El segundo está compuesto de aspectos subjetivos y conceptuales que componen la representación social de la enfermedad de Alzheimer, con significados relacionados con el contexto emocional, médico y biológico. CONCLUSIÓN: En virtud de la importancia de los temas relacionados con la dependencia del paciente y las repercusiones personales y emocionales de la enfermedad, la sobrecarga es el principal contenido de la enfermedad de Alzheimer para los cuidadores y el conocimiento de dichas RS por los profesionales sanitarios debe subsidiar la planificación de intervenciones dirigidas a ese grupo

AVALIAÇÃO DAS DEMANDAS JUDICIAIS POR ACESSO A MEDICAMENTOS NO DISTRITO FEDERAL

Este trabalho investigou as demandas por medicamentos indisponíveis na Secretaria de Saúde do Distrito Federal (SES-DF) e avaliou os aspectos clínicos, processuais e financeiros das ações judiciais interpostas contra o poder público do Distrito Federal de 2009 a 2011. Realizou-se consulta à SES-DF para compreender as possíveis formas de requerimento desses produtos e conhecer os gastos com seu atendimento. Junto à Procuradoria Geral do Distrito Federal, consultaram-se cópias dos processos para traçar o perfil das demandas judiciais por medicamentos. Foram analisadas as evidências científicas disponíveis para as indicações citadas nos processos dos 10 medicamentos mais solicitados em cada ano. Verificou-se que a maioria das solicitações por medicamentos indisponíveis na SES-DF refere-se a ações judiciais, totalizando gasto de aproximadamente 12 milhões de reais em 2011. As características dos autores dos processos sugerem indivíduos menos favorecidos socioeconomicamente, sendo em sua maioria crianças e idosos, predominantemente estudantes e aposentados, representados pela Defensoria Pública. Grande parte dos medicamentos solicitados não está incluída nos elencos da Assistência Farmacêutica e suas evidências científicas sugerem baixo grau de recomendação para as indicações identificadas. Além disso, os processos apresentam poucas justificativas clínicas e quase a totalidade apresenta resultado favorável aos autores

Sleep Problems in Parkinson’s Disease Patients from a Population-based Cohort in Central California

Parkinson’s disease (PD) is the second most common neurodegenerative disease in the world, and aging individuals are at greater risk for developing it. Though PD is better known by its motor manifestations of tremor at rest, bradykinesia, and rigidity, it also encompasses a variety of non-motor symptoms (NMS). These usually impact patients’ quality of life at a similar or greater extent than the motor signs. NMS include autonomic disturbances (constipation, urinary and gastric problems), mood and neuropsychiatric symptoms (depression, anxiety, and apathy), and sleep disturbances. Sleep-related disorders are one of the most common NMS in PD, especially insomnia, excessive daytime sleepiness (EDS), and REM sleep behavior disorder (RBD). Because sleep problems are also highly prevalent in the general older adult population and constitute a public health problem, our aim was to investigate multiple clinical factors, related and unrelated to PD, as potential causes or effects of self-reported sleep problems in Parkinson’s disease patients from a population-based cohort in Central California. We first analyzed the association of probable RBD features (pRBD), measured with a questionnaire, with PD motor and cognitive progression. With information from 716 patients at baseline, prevalence of pRBD was 21%. In adjusted Cox regression models among patients with a Postural Instability and Gait Dysfunction (PIGD) phenotype, those with pRBD progressed faster to a motor UPDRS ≥ 35 (HR= 1.9, 95% CI= 1.1; 3.3). All patients with pRBD progressed twice as fast to a MMSE score≤ 24 (HR= 2.0, 95% CI= 1.1; 3.7). From 477 patients who completed at least one follow-up, we had information on the MOS-Sleep questionnaire to examine the cross-sectional associations of PD specific features with insomnia and EDS symptoms at an average of six years of PD duration. For 156 patients, information on a second measure was also available on average two years after the first. In adjusted linear regressions with standardized insomnia or EDS scores as outcomes (mean=0 and standard deviation=1), PIGD motor signs, worse autonomic symptoms, and complex non-motor symptoms (depression, anxiety, apathy, hallucinations and dopamine dysregulation syndrome) were associated with both scores. Yet motor UPDRS tremor sub-scores and motor complications were only associated with increase in insomnia scores, and levodopa dose was associated strongly with EDS score increase (β=0.04; 95% CI 0.01, 0.08) than with insomnia (β=0.03; 95% CI 0.00, 0.06). We also examined the association of historic neuropsychiatric diagnoses and medication, and concurrent depression symptoms with prevalent insomnia and EDS at the same average of six years of PD duration. Average MOS-Sleep EDS score was 42.2� 23.7, and insomnia score was 30.5� 22.6 (range 0 – 100). In women, anxiety or depression diagnosis occurring 10+ years before PD contributed most strongly to insomnia scores, compared to those never diagnosed (mean difference: 13.8; 95% CI 5.5, 22.0). While in men, depression or anxiety diagnosed in prodromal or clinical stages of PD (<10 years before PD diagnosis) contributed to insomnia symptoms (8.0; 95% CI 1.8, 14.2) and to EDS (9.4; 95% CI 2.4, 16.3). Current depression treatment and symptoms were strongly associated with EDS in men more than women. In longitudinal models, only those with lower motor or autonomic symptom scores at the first follow-up showed further increase in insomnia scores after two additional years. This suggests that there may be a saturation effect of how these PD features affect further worsening of insomnia symptoms over the course of PD. Mood symptoms (GDS scores) at the first sleep measure were not associated with worsening sleep symptoms over two years of follow-up.Employing data from one of the largest population-based studies of PD, in which movement disorder specialists assessed patients, we confirmed evidence that pRBD features are a clinical marker for faster cognitive decline and possibly also motor progression in PD patients, the latter for patients with a PIGD subtype early in the disease. Although sleep problems in PD result from a complex interaction of lifestyle and clinical factors that can be PD-related or not, we estimated the contribution of some PD-related features to insomnia and EDS symptoms, showing that different PD features are associated with different sleep symptoms, providing insight into how sleep symptoms change over time. We also indicate evidence that mood disorders diagnosis and symptoms contribute to prevalent insomnia and EDS symptoms in PD patients, with features differing in men and women

Sleep Problems in Parkinson’s Disease Patients from a Population-based Cohort in Central California

Parkinson’s disease (PD) is the second most common neurodegenerative disease in the world, and aging individuals are at greater risk for developing it. Though PD is better known by its motor manifestations of tremor at rest, bradykinesia, and rigidity, it also encompasses a variety of non-motor symptoms (NMS). These usually impact patients’ quality of life at a similar or greater extent than the motor signs. NMS include autonomic disturbances (constipation, urinary and gastric problems), mood and neuropsychiatric symptoms (depression, anxiety, and apathy), and sleep disturbances. Sleep-related disorders are one of the most common NMS in PD, especially insomnia, excessive daytime sleepiness (EDS), and REM sleep behavior disorder (RBD). Because sleep problems are also highly prevalent in the general older adult population and constitute a public health problem, our aim was to investigate multiple clinical factors, related and unrelated to PD, as potential causes or effects of self-reported sleep problems in Parkinson’s disease patients from a population-based cohort in Central California. We first analyzed the association of probable RBD features (pRBD), measured with a questionnaire, with PD motor and cognitive progression. With information from 716 patients at baseline, prevalence of pRBD was 21%. In adjusted Cox regression models among patients with a Postural Instability and Gait Dysfunction (PIGD) phenotype, those with pRBD progressed faster to a motor UPDRS ≥ 35 (HR= 1.9, 95% CI= 1.1; 3.3). All patients with pRBD progressed twice as fast to a MMSE score≤ 24 (HR= 2.0, 95% CI= 1.1; 3.7). From 477 patients who completed at least one follow-up, we had information on the MOS-Sleep questionnaire to examine the cross-sectional associations of PD specific features with insomnia and EDS symptoms at an average of six years of PD duration. For 156 patients, information on a second measure was also available on average two years after the first. In adjusted linear regressions with standardized insomnia or EDS scores as outcomes (mean=0 and standard deviation=1), PIGD motor signs, worse autonomic symptoms, and complex non-motor symptoms (depression, anxiety, apathy, hallucinations and dopamine dysregulation syndrome) were associated with both scores. Yet motor UPDRS tremor sub-scores and motor complications were only associated with increase in insomnia scores, and levodopa dose was associated strongly with EDS score increase (β=0.04; 95% CI 0.01, 0.08) than with insomnia (β=0.03; 95% CI 0.00, 0.06). We also examined the association of historic neuropsychiatric diagnoses and medication, and concurrent depression symptoms with prevalent insomnia and EDS at the same average of six years of PD duration. Average MOS-Sleep EDS score was 42.2� 23.7, and insomnia score was 30.5� 22.6 (range 0 – 100). In women, anxiety or depression diagnosis occurring 10+ years before PD contributed most strongly to insomnia scores, compared to those never diagnosed (mean difference: 13.8; 95% CI 5.5, 22.0). While in men, depression or anxiety diagnosed in prodromal or clinical stages of PD (<10 years before PD diagnosis) contributed to insomnia symptoms (8.0; 95% CI 1.8, 14.2) and to EDS (9.4; 95% CI 2.4, 16.3). Current depression treatment and symptoms were strongly associated with EDS in men more than women. In longitudinal models, only those with lower motor or autonomic symptom scores at the first follow-up showed further increase in insomnia scores after two additional years. This suggests that there may be a saturation effect of how these PD features affect further worsening of insomnia symptoms over the course of PD. Mood symptoms (GDS scores) at the first sleep measure were not associated with worsening sleep symptoms over two years of follow-up.Employing data from one of the largest population-based studies of PD, in which movement disorder specialists assessed patients, we confirmed evidence that pRBD features are a clinical marker for faster cognitive decline and possibly also motor progression in PD patients, the latter for patients with a PIGD subtype early in the disease. Although sleep problems in PD result from a complex interaction of lifestyle and clinical factors that can be PD-related or not, we estimated the contribution of some PD-related features to insomnia and EDS symptoms, showing that different PD features are associated with different sleep symptoms, providing insight into how sleep symptoms change over time. We also indicate evidence that mood disorders diagnosis and symptoms contribute to prevalent insomnia and EDS symptoms in PD patients, with features differing in men and women

A representação social da demência para familiares de pacientes

Dissertação (mestrado)—Universidade de Brasília, Faculdade de Ciências da Saúde, Programa de Pós-Graduação de Ciências da Saúde, 2012.No conjunto de doenças crônicas não-transmissíveis que têm sua prevalência aumentada com o envelhecimento, a demência tem atualmente grande expressão na sociedade como geradora de incapacidades e de perda de funcionalidade do doente. A doença é vivenciada no âmbito individual, familiar e social, por isso gera um fluxo de pensamentos e comportamentos, científicos e leigos, que a revelam, assim, como objeto de representações sociais. Conduziu-se uma pesquisa no Centro de Medicina do Idoso do Hospital Universitário de Brasília com objetivo de conhecer as Representações Sociais (RS) dos familiares cuidadores de pacientes com demência sobre a doença. Foram realizadas entrevistas individuais com 26 cuidadores que foram transcritas e geraram um material textual que foi submetido a análise de conteúdo quantitativa por meio do programa ALCESTE. A apresentação icônica do objeto resultante da análise foi interpretada com base no referencial teórico da Teoria das Representações Sociais. A RS da demência encontrada neste trabalho teve seu conteúdo estruturado em dois eixos temáticos. Uma leitura possível do objeto é a de uma entidade descrita com conceitos negociados dos universos biomédicos e populares, legitimada no contexto dos serviços de saúde, vivenciada no âmbito familiar e que envolve práticas, que podem ser mais ou menos desgastantes emocionalmente, para lidar com a dependência e outras manifestações. Dos resultados, conclui-se que devido à importância dos contextos sobre as dificuldades do cotidiano e as repercussões pessoais da demência, a questão da sobrecarga do cuidador é a principal dimensão dessa RS. O tratamento medicamentoso apresenta-se na RS da demência relacionado aos contextos do cuidado cotidiano, do desgaste e dos conceitos da doença. Com o conhecimento dessa RS pelos profissionais de saúde, pode-se planejar intervenções voltadas para esse grupo com uma linguagem mais próxima de quem vivencia a experiência e com menos interferência de estigma, que podem ser capazes de fazer com que essa experiência seja vivenciada com o mínimo de sofrimento possível para o doente e sua família. ______________________________________________________________________________ ABSTRACTOf all chronic non-communicable diseases known to worsen with age, dementia receives great public attention. Dementia can cause severe disability and loss of functionality, the impacts of which affect not only the individual, but their families and society as a whole. This has generated a dialogue about dementia, both in the world of science and the general population and that has created a public image of the disease. The purpose of this study was to identify the Social Representations (SR) of dementia for the caregivers who were family members of patients with the disease. At the University Hospital of Brasília – Center for Aging Medicine, research was conducted by interviewing 26 caregivers who accompanied the patients to medical appointments. The interviews were transcribed into text and subjected to quantitative content analysis using the software ALCESTE and then analyzed qualitatively based on the Social Representations Theory. The SR of dementia found in this study consists of two main themes. One possible interpretation of the object describes it in biomedical concepts negotiated with popular knowledge, legitimated in the context of health services and experienced within the family, involving practices related to the patient being highly dependent, that may be emotionally exhausting to deal with. Drug treatment is presented as an important part of SR of dementia, in relation to the daily care, distress caused by it and conceptual aspects of the disease. Results also highlight the personal effects caused by dementia, and caregiver burden proves to be the main dimension of this SR. With the knowledge of this SR, professionals may plan interventions with a language closer to those who experience the disease in their lives, and are less likely to be influenced by stigma

Clinical progression in Parkinson's disease with features of REM sleep behavior disorder: A population-based longitudinal study

INTRODUCTION:Rapid Eye Movement (REM) sleep behavior disorder (RBD) is characterized by dream enactment and is associated with incidence of neurodegenerative disorders, especially Parkinson's disease (PD). Whether PD with RBD constitutes a distinct subtype with unique progression is unknown. Here, we investigated motor and cognitive symptom progression in patients with self-reported RBD features in adult life. METHODS:We screened for RBD in a cohort of 776 PD patients whom we ascertained using a population-based strategy. Among participants with at least one follow-up (60%), we compared those with and without probable RBD (pRBD) estimating hazard rate ratios for progression events UPDRS-III≥ 35 and MMSE≤ 24. RESULTS:Prevalence of pRBD at baseline was 21%. In adjusted Cox regression models among patients with a Postural Instability and Gait Dysfunction (PIGD) phenotype, those with pRBD progressed faster to a UPDRS-III≥ 35 (HR = 1.92, 95% CI = 1.12; 3.27). Also, all patients with pRBD progressed twice as fast to a MMSE score≤ 24 (HR = 2.04, 95% CI = 1.13; 3.69). In sensitivity analyses, using alternative definition of pRBD and accounting for bias due to loss to follow-up results remained similar. DISCUSSION:Employing data from one of the largest population-based studies of PD, in which movement disorder specialists assessed patients, we confirm evidence that pRBD features are a clinical marker for faster cognitive decline and possibly also motor progression in PD patients, the latter for patients with a PIGD subtype early in disease

Ambient Pyrethroid Pesticide Exposures in Adult Life and Depression in Older Residents of California's Central Valley.

Pyrethroid pesticide exposures may be associated with the onset of depression in later life via disruption of dopaminergic, serotonergic, and neurological functioning. We sought to investigate the association between living near agricultural pyrethroid pesticide applications and depression measures in central California, using two waves (PEG 1&2, total N = 1,654) of a case control study of Parkinson's disease (PD). At enrollment, participants self-reported history of use of depression medications and dates of MD-diagnosed depression and anxiety. Participants also completed a Geriatric Depression Scale-Short Form upon enrollment. We used the California Pesticide Use Registry to assign estimated ambient pyrethroid pesticide exposures at participant's home addresses over the 5 years before the index date (date of outcome, or an age-matched year for participants without the outcome). We used logistic and linear regression to evaluate associations between living near any pyrethroid applications over the 5-year index period and measures of depression and anxiety. We also evaluated modification by study wave and PD status. We observed associations of pyrethroids with depression, depression medications, and anxiety (adjusted odds ratio [aOR] depression = 1.54, 95% confidence interval [CI] 1.14, 2.07; aOR depression medications = 1.68, 95% CI 1.25, 2.25; aOR anxiety = 1.60, 95% CI 1.17, 2.18). However, we observed no associations with mild/moderate depressive symptoms according to the GDS score at enrollment (aOR = 1.04, 95% CI 0.77, 1.42). We did not observe a consistent modification of the pyrethroid-depression associations by study wave and PD status. Ambient pyrethroid pesticide exposures may be associated with measures of depression in later life