ABSTRACT
Objetivo. Se presenta una propuesta de las característicasestructurales y funcionales necesarias para desarrollar un registrode demencias que permita recoger con garantías de fiabilidady validez la información estandarizada de los casos diagnosticadosde demencia en los centros sanitarios de atención especializada deun área geográfica definida. Desarrollo. Debido a la falta de informaciónsobre los aspectos relativos al impacto de las demenciassobre el sistema sanitario, en términos de utilización de recursos yen patrones de detección, derivación, diagnóstico y tratamiento enla práctica clínica habitual por parte de atención primaria y secundaria,se propone una implementación secuencial del registro paraadaptarse a cada territorio o región sanitaria. En primer lugar, sedeberían identificar los casos y las fuentes de información; en segundolugar, desarrollar un sistema de recogida de datos que permitaadoptar de forma estandarizada la recogida de información yestablecer una estrecha colaboración con los especialistas que llevena cabo el diagnóstico de demencia; y, en tercer lugar, aportar alregistro una estructura logística y de personal que centralice todaslas funciones y actividades del registro. Conclusiones. La vigilanciaepidemiológica es un instrumento fundamental para la planificación,gestión y distribución de los recursos sociosanitarios, para elseguimiento de la evolución natural de enfermedades crónicas asícomo para evaluar el impacto de programas preventivos. En estesentido, y desde un punto de vista funcional, la propuesta de unregistro de demencias cumple todos los requisitos básicos de la vigilanciaepidemiológica
Aims. We outline a proposal for the structural and functional features needed to develop a registry of dementiaswhich can be used to collect standardised information that is both reliable and valid concerning cases of dementia in thespecialised health care centres within a particular geographical area. Development. Due to the shortage of information aboutaspects concerning the impact of dementias on the health care system (in terms of the usage of resources and patterns ofdetection, referral, diagnosis and treatment in usual clinical practice in primary and secondary care), a sequentialimplementation of the registry is proposed so that it can be adapted to each health district or region. The first step is to identifythe cases and sources of information; second, a system for collecting data must be developed that allows information to begathered in a standardised manner while at the same time making it possible to work in close collaboration with thespecialists who diagnose dementia; and, third, it must be set up with the logistics and staff needed to centralise all thefunctions and activities of the registry. Conclusions. Epidemiological surveillance is an essential instrument for planning,managing and distributing community health resources, for following up the natural history of chronic diseases and forassessing the impact of programmes of prevention. In this respect, and from a functional point of view, the proposed registry ofdementias meets all the basic requirements of epidemiological surveillance
Subject(s)
Humans , Dementia/classification , Dementia/diagnosis , Dementia/epidemiology , Population Surveillance , Records , Health Planning , Information Systems , Public HealthABSTRACT
AIMS: We outline a proposal for the structural and functional features needed to develop a registry of dementias which can be used to collect standardised information that is both reliable and valid concerning cases of dementia in the specialised health care centres within a particular geographical area. DEVELOPMENT: Due to the shortage of information about aspects concerning the impact of dementias on the health care system (in terms of the usage of resources and patterns of detection, referral, diagnosis and treatment in usual clinical practice in primary and secondary care), a sequential implementation of the registry is proposed so that it can be adapted to each health district or region. The first step is to identify the cases and sources of information; second, a system for collecting data must be developed that allows information to be gathered in a standardised manner while at the same time making it possible to work in close collaboration with the specialists who diagnose dementia; and, third, it must be set up with the logistics and staff needed to centralise all the functions and activities of the registry. CONCLUSIONS: Epidemiological surveillance is an essential instrument for planning, managing and distributing community health resources, for following up the natural history of chronic diseases and for assessing the impact of programmes of prevention. In this respect, and from a functional point of view, the proposed registry of dementias meets all the basic requirements of epidemiological surveillance.
Subject(s)
Dementia , Population Surveillance , Registries , Dementia/classification , Dementia/diagnosis , Dementia/epidemiology , Health Planning , Humans , Information Systems , Public HealthABSTRACT
Introducción. Las personas con síndrome de Down envejecen precozmente, sobre todo a partir de los 40 años, mientras un porcentaje significativo inicia, a partir de esta edad, un deterioro progresivo de sus capacidades cognitivas y funcionales previas, secundario todo ello a un proceso degenerativo primario de tipo enfermedad de Alzheimer. Estudios clínicos piloto en esta población, en los que se ha valorado la repuesta al tratamiento con donepecilo, han demostrado beneficios terapéuticos. Objetivo. Evaluar la eficacia y seguridad del tratamiento farmacológico con donepecilo sobre los trastornos cognitivos y conductuales en población con síndrome de Down mayor de 40 años, en la que la familia y educadores de referencia han observado cambios cognitivos y conductuales respecto a su nivel previo de discapacidad. Pacientes y métodos. Los pacientes han sido seleccionados a través de diferentes instituciones filiadas por la Fundació Catalana de Síndrome de Down y por la Federación Catalana Pro Personas con Disminución Psíquica. Se han utilizado escalas de valoración de deterioro, conducta y funcionalismo adaptadas a esta población. Resultados. Los resultados del estudio han demostrado que el donepecilo ralentiza la progresión de la disfunción cognitiva, especialmente durante los primeros tres meses de tratamiento. Esto sucede tanto en las escalas cognitivas como sociales. Conclusiones. El donepecilo parece ser efectivo en el tratamiento de los trastornos cognitivos y de la conducta en la demencia progresiva del síndrome de Down. Todas las muestras publicadas en diferentes estudios han sido pequeñas, lo que hace necesario poner en marcha estudios multicéntricos para validar la respuesta de estos sujetos a la terapia anticolinesterásica (AU)
Introduction. People with Down syndrome have an early aging process, especially form their 40s. There is a significant average of them who initiate, from that age on, a progressive decline of their cognitive and functional abilities, due to a primary degenerative process Alzheimers disease type. When assessing response to treatment with, pilot clinical trials on this population have demonstrated real benefits therapeutically. Aims. To assess the efficacy and safety of a pharmacological treatment with donepezil over cognitive and behavioral disturbances on patients with Down syndrome older than 40 years, areas where family and professional educators of reference have observed cognitive and behavioral changes in comparison with their previous level of disability. Patients and methods. Patients have been selected from different institutions affiliated at the Catalan Foundation for the Down syndrome and by the Catalan Federation Pro Persons with Psychic Disability. Several deterioration, behavioral and functional assessment scales have been used, all of them validated into this population. Results. The results of study demonstrated that donepezil slowed the progression of the cognitive dysfunction, especially during the first three months of treatment. This occurred for both cognitive and social-behavioral outcomes. Conclusions. Donepezil appears to be effective in the treatment of cognitive and behavioural disturbances associated with the progressive dementia syndrome in Downs. However, the sample sizes used in this, and all published studies are small and this emphasizes the need for a larger, multi-center trial to fully evaluate the nature and extent of the response of Down's syndrome patients to anticolinesterase therapy (AU)
Subject(s)
Humans , Down Syndrome/complications , Alzheimer Disease/complications , Alzheimer Disease/drug therapy , Nootropic Agents/administration & dosage , Nootropic Agents/therapeutic use , Dementia/physiopathology , Intellectual Disability/etiology , Cognition Disorders/drug therapyABSTRACT
INTRODUCTION: People with Down syndrome have an early aging process, especially form their 40s. There is a significant average of them who initiate, from that age on, a progressive decline of their cognitive and functional abilities, due to a primary degenerative process Alzheimer's disease type. When assessing response to treatment with, pilot clinical trials on this population have demonstrated real benefits therapeutically. AIMS: To assess the efficacy and safety of a pharmacological treatment with donepezil over cognitive and behavioral disturbances on patients with Down syndrome older than 40 years, areas where family and professional educators of reference have observed cognitive and behavioral changes in comparison with their previous level of disability. PATIENTS AND METHODS: Patients have been selected from different institutions affiliated at the Catalan Foundation for the Down syndrome and by the Catalan Federation Pro Persons with Psychic Disability. Several deterioration, behavioral and functional assessment scales have been used, all of them validated into this population. RESULTS: The results of study demonstrated that donepezil slowed the progression of the cognitive dysfunction, especially during the first three months of treatment. This occurred for both cognitive and social-behavioral outcomes. CONCLUSIONS: Donepezil appears to be effective in the treatment of cognitive and behavioural disturbances associated with the progressive dementia syndrome in Down's. However, the sample sizes used in this, and all published studies are small and this emphasizes the need for a larger, multi-center trial to fully evaluate the nature and extent of the response of Down's syndrome patients to anticolinesterase therapy.
