Abstract 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.

Objectives: To determine changes over time in self and caregiver ratings of quality of life (QoL) in people with dementia (PwD) and to identify factors associated with changes in QoL ratings. Methods: In this longitudinal study, 69 people with mild Alzheimer’s disease and their caregivers were assessed at baseline and after 1 year. We examined the association of QoL ratings with the following variables at the two time points: awareness of disease, cognitive status, mood, functionality, neuropsychiatric symptoms, and caregiver burden. Multivariate regression analyses were conducted to examine the contribution of co-factors. Results: At baseline, PwD self-ratings of QoL were associated with caregiver ratings of PwD QoL (p = 0.001). Caregiver ratings were associated with PwD mood (p = 0.001) and self-rated QoL (p = 0.001). After 1 year, caregiver ratings of PwD QoL changed significantly (p = 0.049, d = -0.27), whereas PwD self-ratings did not (p = 0.89, d = 0.09). PwD awareness of disease changed significantly (p = 0.001) at 1 year, having declined in 25.4% and improved in 12.3% of participants. PwD QoL self-ratings were associated with caregiver ratings (p = 0.001). Caregiver ratings of PwD QoL after 1 year were associated with PwD mood (p = 0.029), self-reported QoL (p = 0.001), and awareness of disease (p = 0.033). Conclusions: The association between self and caregiver ratings of PwD QoL was maintained over 1 year. The primary factors accounting for the change in caregiver ratings were PwD mood and awareness of disease. QoL and cognitive impairment seem to be relatively independent in mild dementia.

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.

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.

Introdução: A demência de início precoce ( early onset dementia , EOD) vem sendo reconhecida como um importante problema clínico e social devido aos efeitos sobre a saúde física e mental das pessoas com demência e seus cuidadores. Objetivo: Analisar o impacto psicossocial da EOD em cuidadores familiares. Métodos: O estudo baseia-se na metodologia qualitativa. Foram realizadas entrevistas semiestruturadas com nove cuidadores EOD (sete mulheres) recrutados em um serviço para doença de Alzheimer. Utilizou-se análise fenomenológica interpretativa para analisar as narrativas dos cuidadores. Resultados: Cinco temas emergiram das narrativas: impacto psicológico e emocional; impacto físico; impacto financeiro e profissional; impacto social e necessidade de serviços de apoio. A maioria dos cuidadores percebe seu bem-estar emocional como ruim ou extremamente ruim. Os cuidadores reconhecem prejuízos na saúde física, que tendem a ser mais duradouros do que os problemas de saúde mental. Dois cuidadores tiveram que se aposentar após o diagnóstico de demência, e sete diminuíram sua carga de trabalho porque tinham que cuidar dos pacientes. Preservar as habilidades das pessoas com demência é essencial para manter a sua autoestima, dignidade e sentimento de utilidade. Para os cuidadores, intervenções e atividades de estimulação fazem com que as pessoas com demência se sintam mais úteis e contribuam para uma vida melhor. Conclusão: Os cuidadores de pessoas com EOD assumem prematuramente o papel de cuidador e precisam equilibrar esta atividade com outras responsabilidades. Há necessidade de mais estudos sobre EOD, a fim de se obter uma melhor compreensão do impacto da doença e para o desenvolvimento de serviços adequados para pacientes e seus cuidadores.

Introduction: There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

Objetivo: Examinar diferenças na consciência da doença em participantes de um grupo psicoeducacional direcionado a cuidadores latino-americanos de pessoas com demência. Método: Foram avaliados participantes de um grupo desenvolvido em um serviço para doença de Alzheimer. Utilizou-se análise fenomenológica interpretativa para analisar diferenças nos relatos dos cuidadores. Resultados e Discussão: Os participantes, em sua maioria esposas e filhas, apresentaram sobrecarga moderada e diferentes níveis de consciência da doença (preservada, parcial ou inexistente). A consciência da doença e o desenvolvimento de estratégias de enfrentamento foram influenciados pelo familismo, religiosidade e sentimento de obrigação moral. Tornar-se um cuidador também foi considerado positivo em alguns casos, por convicções religiosas e crenças relacionadas à importância do cuidar. A ausência de consciência pode refletir uma tentativa de manter a identidade do paciente. Conclusão: Os dados permitem algumas comparações entre culturas, as quais podem ser valiosas para avaliar a influência de diferentes contextos psicossociais no conhecimento sobre a demência.

Objective: To explore differences in disease awareness in participants of a psychoeducational group designed for Latin American caregivers of people with dementia. Method: We assessed participants of a group developed at an outpatient unit for Alzheimer's disease. Interpretative phenomenological analysis was used to analyze differences in the caregivers' reports. Results and Discussion: The participants, mostly spouses and daughters, presented moderate caregiver burden and different levels of awareness (aware, partially aware, or unaware). Disease awareness and the development of coping strategies were influenced by familism, religiosity, and duty. Becoming a caregiver was considered positive in some cases, due to religious convictions and beliefs related to the importance of caregiving. Caregiver unawareness may reflect an attempt to maintain integrity of the patient's identity. Conclusions: Our data allow some comparisons across cultures, which may be valuable in assessing the influence of different psychosocial environments on the knowledge about dementia.