Domains of quality of life in Alzheimer's disease vary according to caregiver kinship.

INTRODUCTION: Compared to other types of caregiver, spouse-caregivers tend to be closer to people with Alzheimer's disease (PwAD) because of their different position in the relationship. We designed this study to compare the differences in caregivers' quality of life (QoL) and domains of QoL according to the kinship relationship between the members of caregiving dyads. METHODS: We assessed QoL of 98 PwAD and their family caregivers (spouse-caregivers, n = 49; adult children, n = 43; and others, n = 6). The PwAD and their caregivers completed questionnaires about their QoL, awareness of disease, cognition, severity of dementia, depression, and burden of caring. RESULTS: The comparison between caregiver types showed that spouse-caregivers were older, with higher levels of burden and lower scores for cognition. Caregivers' total QoL scores were not significantly different according to type of kinship. However, there were significant differences in the domains physical health (p = 0.04, Cohen's d [d] = -0.42), marriage (p = 0.01, d = 1.31), and friends (p = 0.04, d = -0.41), and life as a whole showed a trend to difference (p = 0.08, d = -0.33). When QoL domains were analyzed within dyads, there were significant differences between members of spouse dyads in the domains energy (p = 0.01, d = -0.49), ability to do things for fun (p = 0.01, d = -0.48), and memory (p = 0.000, d = -1.07). For non-spouse dyads, there were significant differences between caregivers and PwAD for the QoL domains memory (p = 0.004, d = -0.63), marriage (p = 0.001, d = -0.72), friends (p = 0.001, d = -0.65), and ability to do chores (p = 0.000, d = -0.76). CONCLUSIONS: Differences were only detected between spouse/non-spouse-caregivers when QoL was analyzed by domains. We speculate that spouse and non-spouse caregivers have distinct assessments and perceptions of what is important to their QoL.

Concepts and objects of awareness in Alzheimer’s disease: an updated systematic review / Conceitos e objetos da consciência na doença de Alzheimer: uma revisão sistemática atualizada

ABSTRACT Objectives To compare and discuss the objects of awareness in Alzheimer’s disease (AD): awareness of cognitive deficits, of functional activities, of social-emotional functioning and behavioral impairment. Methods A search in the PsycINFo, Pilots, PubMed/Medline and ISI electronic databases according to Prisma methodology was performed. We included studies about awareness in people with AD published between 2010 and 2015, with the combination of keywords: “Alzheimer AND awareness of deficits”, “Alzheimer AND anosognosia”, “Alzheimer AND insight”, “dementia AND awareness of deficits”, “dementia AND anosognosia”, “dementia AND insight”. The articles were categorized according to the specific object of awareness. Results Seven hundred and ten records were identified and, after application of the exclusion criteria, 191 studies were retrieved for potential use. After excluding the duplicates, 46 studies were included. Most studies assessed the cognitive domain of awareness, followed by the functional, social-emotional, and behavioral impairment domains. Memory deficits were not sufficient to explain impaired awareness in AD. Longitudinal studies did not find discrepancies between patients and caregivers’ reports, indicating that awareness is not related to cognition. Conflicting findings were observed, including the relation between awareness, mood, severity of disease, and personal characteristics. Conclusions The studies show lack of conceptual consensus and significant methodological differences. The inclusion of samples without differentiation of dementia etiology is associated to symptomatic differences, which affect awareness domains. Awareness in AD is a complex and multidimensional construct. Different objects elicit different levels of awareness.

RESUMO Objetivos Comparar e discutir os objetos de consciência na doença de Alzheimer (DA): consciência dos déficits cognitivos, das atividades funcionais, do funcionamento socioemocional e prejuízos comportamentais. Métodos Realizou-se uma busca nas bases de dados PsycINFo, Pilots, PubMed/Medline e ISI de acordo com a metodologia do Prisma. Os artigos incluídos, publicados entre 2010 e 2015, avaliavam a consciência na DA com as combinações de palavras-chave: “Alzheimer AND consciência do déficit”, “Alzheimer AND anosognosia”, “Alzheimer AND insight”, “demência AND consciência do déficit”, “demência AND anosognosia”, “demência AND insight”. Os artigos foram categorizados conforme os objetos específicos da consciência. Resultados Setecentos e dez estudos foram identificados e, após a aplicação dos critérios de exclusão, 191 foram selecionados. Após a exclusão dos duplicados, 46 estudos foram incluídos. A maioria dos estudos avaliou o domínio cognitivo da consciência, seguido do funcional, do funcionamento socioemocional e prejuízos comportamentais. Déficits na memória não se mostraram suficientes para explicar o prejuízo da consciência na DA. Os estudos longitudinais não encontraram discrepâncias entre os relatos de pacientes e cuidadores, indicando que a consciência não está relacionada à cognição. Observaram-se controvérsias nos resultados na relação entre consciência, humor, gravidade da doença e características pessoais. Conclusões Os estudos demonstraram falta de consenso conceitual e diferenças metodológicas significativas. A inclusão de amostras sem diferenciação da etiologia demencial está associada a diferenças sintomáticas que afetam os domínios da consciência. A consciência na DA é um constructo complexo e multidimensional. Diferentes objetos suscitam diferentes níveis de consciência.