La evaluación de la calidad de vida en personas con demencia / Quality of life assessment in patients with dementia

La calidad de vida (CV) es una de las variables resultado más importantes para estudiar la eficacia de intervenciones en personas con demencia. Sin embargo, su evaluación es difícil porque: a) este es un constructo complejo para el que no existe una aproximación teórica o conceptual unificada, y b) porque al tratarse de personas con deterioro cognitivo se complica enormemente la obtención de información fiable. En este trabajo se revisan diferentes métodos e instrumentos dirigidos a este fin. Es importante tener en cuenta la visión subjetiva de la propia persona evaluada pues las evaluaciones de personas próximas tienden a subestimar la CV. A pesar de que el campo necesita más desarrollo, se concluye que el instrumento de elección es el QOL-AD, por ser sensible al cambio, correlacionar con medidas de salud, estar traducido a varios idiomas y poder administrarse a personas con puntuaciones bajas en el MMSE(AU)

Quality of life (QoL) is one of the most important outcome variables in the study of the efficacy of interventions with people with dementia. However, its assessment is difficult 1) because it is a complex construct for which there is no unified theoretical or conceptual approach, and 2) because of the inherent difficulties in the cognitive impairments of the people under study. In this work different methods and instruments to this end are reviewed, and related findings are discussed. It is important to take into account the subjective view of the assessed person, as assessments done by proxies tend to underestimate QoL. In spite of the need for further development in this field, it is concluded that the instrument of choice is the QOL-AD, as it is change-sensitive, it correlates with health measurements, it is translated into several languages and it can be administered to people with low MMSE scores(AU)

[Quality of life assessment in patients with dementia]. / La evaluación de la calidad de vida en personas con demencia.

Quality of life (QoL) is one of the most important outcome variables in the study of the efficacy of interventions with people with dementia. However, its assessment is difficult 1) because it is a complex construct for which there is no unified theoretical or conceptual approach, and 2) because of the inherent difficulties in the cognitive impairments of the people under study. In this work different methods and instruments to this end are reviewed, and related findings are discussed. It is important to take into account the subjective view of the assessed person, as assessments done by proxies tend to underestimate QoL. In spite of the need for further development in this field, it is concluded that the instrument of choice is the QOL-AD, as it is change-sensitive, it correlates with health measurements, it is translated into several languages and it can be administered to people with low MMSE scores.

Presencia física de profesionales de Salud Mental en un Centro de Atención Primaria como forma alternativa de coordinación. Una experiencia piloto / Physical presence of mental health professionals in a primary care centre as an alternative way of coordination. A pilot experience

Introducción: Problemas de coordinación entre los niveles de atención primaria y salud mental sugieren la necesidad de explorar nuevas vías que faciliten la comunicación entre ambos niveles asistenciales. Material y Método: Un Psiquiatra y un Psicólogo Clínico de Alcalá de Henares (Área 3 de la Comunidad Autónoma de Madrid) se han desplazado un día a la semana a un centro de atención primaria (centro experimental) para evaluar pacientes derivados por los médicos de ese centro y contrastar directamente con ellos sus valoraciones. Después de 15 meses de funcionamiento, se administró a los médicos un cuestionario acerca de su satisfacción con su relación con salud mental. Sus respuestas se compararon con las de médicos de otro centro en el que no tenía lugar la experiencia (centro control). Resultados: los médicos del centro experimental valoraban mejor la información recibida por salud mental y la cantidad de contactos que tenían con ellos, percibían al equipo de salud mental como más disponible, recibían más cursos específicos, se habían coordinado más con salud mental y, en general, valoraban mejor la coordinación atención primaria - salud mental que los del centro control. Conclusiones: La experiencia muestra cómo es posible una forma alternativa de coordinación con la que los médicos de primaria se muestran altamente satisfechos. Se plantean algunas cuestiones metodológicas y posibles vías para continuar futuros trabajos (AU)

Introduction: Coordination problems between primary care and mental health levels suggest the need to explore new ways to improve communication between both levels. Procedures: A psychiatrist and a clinical psychologist in Alcalá de Henares, Madrid, moved to a primary care centre (experimental centre) once a week in order to assess patients referred by the general practitioners there and share afterwards their views with them. After 15 months working this way, general practitioners were given a survey about their satisfaction with their relation to mental health. Their answers were compared with those of the staff from another centre (control centre). Outcome: the staff in the experimental centre valued more positively than the staff in the control centre the following aspects: quality of information received from mental health, amount of contacts with mental health, availability of mental health staff, specific formation on mental health and coordination with mental health staff. Discussion: This experience shows how it is possible to develop an alternative way of coordination between mental health and primary care with which general practitioners feel highly satisfied. Methodological issues as well as possible ways for future works are discussed (AU)

[Features of support groups for the caregivers of relatives with Alzheimer's disease: an exploratory analysis]. / Caracterización de los grupos de ayuda mutua para cuidadores de familiares enfermos de Alzheimer: un análisis exploratorio.

INTRODUCTION: Caregiver Support Groups (CSG) are one of the first and most popular caregiver interventions but their main features remain unknown. The objective of this study was to analyze and characterize the CSG used in Spain, as well as to identify their basic therapeutic principles. MATERIAL AND METHODS: semi-structured interviews were performed in the coordinators of the five CSG in the Alzheimer's Patients Relatives' Association [Asociación Nacional de Alzheimer AFAL Contigo] in Madrid (Spain). RESULTS: the CSG analyzed held 90-minute fortnightly sessions coordinated by female volunteers with caregiver experience. The mean size of the groups was nine members and, although open to new members, these groups tended to be stable. The meetings were fairly unstructured and the topics arose spontaneously. CONCLUSIONS: CSG work mainly through information sharing and mutual support among caregivers. Several of the coordinators' answers corresponded to therapeutic factors such as support, self-revelation and learning (but not psychological work). The coordinators seemed to manage these factors intuitively, based on their own experience. Knowledge of how CSGs work is an essential step to analyze their effects.

Caracterización de los grupos de ayuda mutua para cuidadores de familiares enfermos de Alzheimer: un análisis exploratorio / Features of support groups for the caregivers of relatives with Alzheimer's disease: an exploratory analysis

Introducción: los grupos de ayuda mutua (GAM) son una de las primeras y más populares intervenciones para cuidadores; sin embargo, se continúan desconociendo sus componentes principales. El objetivo del presente trabajo es el análisis y la caracterización de los GAM que se utilizan en nuestro entorno, y la especificación de sus principios terapéuticos básicos. Material y métodos: entrevistas semiestructuradas a las coordinadoras de 5 GAM de la Asociación Nacional de Alzheimer AFAL Contigo de Madrid. Resultados: los GAM estudiados se reúnen quincenalmente en sesiones de 90 min de duración y están dirigidos por voluntarias con experiencia como cuidadoras. El tamaño medio de los grupos es de 9 miembros y, a pesar de estar abiertos a nuevos cuidadores, su composición es estable. El formato de las reuniones es poco estructurado y los temas de conversación surgen espontáneamente. Conclusiones: el funcionamiento de los GAM descansa sobre dos pilares básicos: la transmisión de información y el apoyo entre cuidadores. Varias de las respuestas de las coordinadoras se corresponden con los factores terapéuticos grupales de apoyo, autorrevelación y aprendizaje (no así de trabajo psicológico), que las coordinadoras parecen estar manejando de manera intuitiva, en base a su experiencia. Conocer los mecanismos de funcionamiento de los GAM es un paso necesario para poder estudiar adecuadamente sus efectos

Introduction: Caregiver Support Groups (CSG) are one of the first and most popular caregiver interventions but their main features remain unknown. The objective of this study was to analyze and characterize the CSG used in Spain, as well as to identify their basic therapeutic principles. Material and methods: semi-structured interviews were performed in the coordinators of the five CSG in the Alzheimer¿s Patients Relatives¿ Association [Asociación Nacional de Alzheimer AFAL Contigo] in Madrid (Spain). Results: the CSG analyzed held 90-minute fortnightly sessions coordinated by female volunteers with caregiver experience. The mean size of the groups was nine members and, although open to new members, these groups tended to be stable. The meetings were fairly unstructured and the topics arose spontaneously. Conclusions: CSG work mainly through information sharing and mutual support among caregivers. Several of the coordinators¿ answers corresponded to therapeutic factors such as support, self-revelation and learning (but not psychological work). The coordinators seemed to manage these factors intuitively, based on their own experience. Knowledge of how CSGs work is an essential step to analyze their effects (AU)