BackgroundDementia is a progressive and highly disabling neurodegenerative disease that will likely become highly prevalent in the future due to the globally aging population. To improve health care efficiency and quality for dementia care, eHealth could help with, for example, an online portal, such as the Digital Alzheimer Center (DAC) of the Vrije Universiteit Medical Center Amsterdam. It provides up-to-date disease information, peer-to-peer contact, and methods for contacting the hospital and health professionals.ObjectiveWe aimed to investigate the usability and usefulness of the DAC for patients with dementia and carers to get insight into the feasibility and value of this eHealth app in dementia care and to recommend potential improvements.MethodsA descriptive study among patients, carers, and health care professionals was performed. Mixed methods were used, consisting of observations (n=10, 4 people with dementia, 6 carers), an online survey (n=287; 88 patients, 199 carers), and semistructured interviews (n=18; 6 patients, 6 carers, 6 health care professionals). During the observations, participants performed a set of five different prescribed tasks on the portal. Speed, number of errors, and navigation were noted. The online survey aimed to assess users’ opinions on the portal’s usability and usefulness. Semistructured interviews were conducted in a subsample of patients, carers, and health care professionals to gain more in-depth information.ResultsIn the usability assessment, eight categories of errors were distinguished, of which three were of critical, two of medium, and three of low severity. In the survey, 45% (40/88) of the patients and 53% (105/199) of the carers indicated they used the portal. In all, 33% (12/36) of patients and 61% (62/102) of carers found it easy to learn to work with the portal. Most considered the DAC generally useful: 65% (17/26) of patients and 78% (67/86) of carers found the DAC useful, especially for understanding dementia (patients: 64%, 16/25; carers: 62%, 53/86). In the semistructured interviews, the site was generally rated positively on usability and usefulness and being well designed. People with dementia and carers indicated it helped them to understand and deal with dementia.ConclusionsTo our knowledge, this is the first study investigating the usability and usefulness of an Internet portal especially designed for people with dementia and their carers. An online patient portal could be a useful means to help to support patients and carers in dealing with dementia: the majority of users positively evaluated usability and usefulness of the portal, and appreciated the information on it. However, only a minority of patients found it easy to work with the portal. Good design and frequent usability testing is essential to offer a good online portal.

de men tia d e m e n t i aAbstract Many different definitions of the concept of quality of life (QOL) are found in the literature. This raises the question as to which domains are viewed as really important by people with dementia and which are possibly based on views of others, such as (in)formal carers, or theoretical models. An explorative study was carried out among people with dementia living in the community and in nursing homes. Their opinions were compared to those of professional carers and to the current theoretical models and instruments for QOL in dementia. Data were gathered by means of interviews, focus groups and literature study. Most QOL domains mentioned as important by the persons with dementia were also acknowledged by the carers and in the literature. A few, however, were not mentioned by the carers (i.e. 'sense of aesthetics in living environment', 'financial situation' and 'being of use/giving meaning to life'), and not selected in the measuring instruments ('security and privacy', and 'self-determination and freedom'). This indicates differences in perspectives on quality of life between persons with dementia, their carers and theoretical models. Further research is recommended on this point.

The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.

This epidemiological and cross-sectional study describes the burdens and emotional distress observed among caregivers of elderly people. It was carried out in 2009 with 124 caregivers living in the city of Ribeirao Preto, SP, Brazil, using the following instruments: the Zarit Burden Scale and the Self-Reporting Questionnaire (SRQ-20) for caregivers. Data analysis was carried out in the SPSS, version 15.0, using descriptive, univariate (frequency tables) and bivariate (contingency tables for qualitative variables) statistics. Among the caregivers, 85.6% were women, with an average age of 56.5 years, spent an average of 12.4 hours daily with care, and 57.6% of them had mild to moderate burdens. Multiple linear regressions revealed that older adults' functional dependence and caregivers' gender and time spent weekly providing daily care were predictors of being burdened (p<0.05). Burden is also a risk factor for emotional distress (p<0.05). It is important for nurses to use protocols based on risk factors to evaluate caregivers in order to prevent burdens from developing. DESCRIPTORS: Caregivers. Psychological stress. Aged. SOBRECARGA E DESCONFORTO EMOCIONAL EM CUIDADORES DE IDOSOS RESUMO: A finalidade deste estudo foi descrever a sobrecarga e o desconforto emocional dos cuidadores de idosos. Estudo epidemiológico e transversal conduzido em 2009 com 124 cuidadores residentes na comunidade de Ribeirão Preto-SP, por meio dos instrumentos: Escala de Sobrecarga de Zarit e Self-Reporting Questionaire (SRQ-20) para o cuidador. A análise dos dados foi realizada no aplicativo SPSS, 15.0, de forma descritiva, univariada (tabelas de frequência) e bivariada (tabelas de contingência para variáveis qualitativas). Os cuidadores, 85,6% do sexo feminino, média de 56,5 anos, utilizaram, em média, 12,4 horas diárias para o cuidar e 57,6% dos cuidadores apresentaram de leve a moderada sobrecarga. Dependência funcional do idoso, sexo do cuidador e tempo em horas para o cuidado, foram preditores da sobrecarga (p<0,05). Encontrou-se, também, que a sobrecarga é fator de risco para desconforto emocional (p<0,05). Cabe aos enfermeiros utilizarem protocolos de avaliação, com base nos fatores de risco, para prevenir a sobrecarga. DESCRITORES: Cuidadores. Estresse psicológico. Idoso. LA SOBRECARGA Y DESÁNIMO EN LOS CUIDADORES DE ADULTOS MAYORES RESUMEN: La finalidad del estudio fue describir la sobrecarga y desánimo de los cuidadores de adultos mayores. Estudio epidemiológico y transversal realizado en el 2009 con 124 cuidadores que viven en la ciudad de Ribeirão Preto, SP, por medio de los instrumentos de: Escala de Sobrecarga de Zarit y Self-Reporting Questionaire (SQR-20) para el cuidador. El análisis de los datos fue ejecutado en el sistema SPSS, 15.0, de forma descriptiva, univariada (tablas de frecuencia) y bivariada (las tablas de contingencia para las variables cualitativas). Con respecto a los cuidadores, 85,6% fueron del sexo femenino, con edad promedio de 56,5 años, utilizaron en promedio 12,4 horas diarias para el cuidado de los a...