Perception of change in sexual activity in Alzheimer's disease: views of people with dementia and their spouse-caregivers.

INTRODUCTION: The onset of Alzheimer's disease (AD) affects couples' relationship. We investigated the perception of change and sexual satisfaction in spouse-caregivers and their partners diagnosed with AD. METHODS: We compared 74 dyads of people with Alzheimer's disease (PwAD)/spouse-caregivers and 21 elderly dyads control. We assessed sexual satisfaction with Questionnaire on Sexual Experience and Satisfaction (QSES), cognition using a Mini-Mental State Examination (MMSE), disease severity using a Clinical Dementia Rating scale (CDR), awareness of disease with Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), functionality with Pfeffer Functional Activities Questionnaire (FAQ), depressive symptoms with Cornell Scale for Depression in Dementia (CSDD), quality of life using a Quality of Life in Alzheimer's Disease Scale (QoL-AD), and burden using a Zarit Burden Interview (ZBI). RESULTS: We found differences between the perception and no perception of change in sexual activity of PwAD (p < 0.001), spouse-caregivers (p < 0.01), and controls (p < 0.05). Moderate to severe sexual dissatisfaction was observed in 36.5% of PwAD, 65% of spouse-caregivers, and 31% of controls. PwAD sexual satisfaction was related to cognitive impairment (p < 0.05). Spouse-caregivers sexual satisfaction was related to gender (p < 0.05) and the presence of sexual activity (p < 0.001). CONCLUSIONS: The perception of change with higher sexual dissatisfaction, were significant in PwAD and their spouse-caregivers, in comparison with couples of elderly without dementia.

Factors associated with caregiver burden: comparative study between Brazilian and Spanish caregivers of patients with Alzheimer's disease (AD).

BACKGROUND: Transcultural studies regarding the comparison of levels of burden in caregivers of patients with Alzheimer's disease (AD) from Europe and Latin America are rare. We designed this study to investigate the differentiating factors associated with burden in Brazilian and Spanish caregivers of patients with AD. METHODS: This is a cross-sectional study composed by samples of outpatients with AD and their caregivers from Brazil (n = 128) and Spain (n = 146). Caregivers answered the Zarit Burden Interview (ZBI) and a Sociodemographic Questionnaire. Patients were assessed with the Mini-Mental State Examination (MMSE), Functional Activities Questionnaire (FAQ), Disability Assessment for Dementia (DAD), Neuropsychiatric Inventory (NPI), and Clinical Dementia Rating (CDR) Scale. RESULTS: In the multivariate regression analysis, high burden levels were reported in Brazil, when caregivers were female (p = 0.025) and when patients did not attend Day Care Center (p = 0.025). In Spain, high burden levels were associated with living with the patient (p = 0.014), younger caregivers (p = 0.003), and participation of patients at Day Care Center (p = 0.046). Also, different neuropsychiatric symptoms explained high burden levels: in Brazil, depression (p < 0.001) and anxiety (p = 0.024) and, in Spain, apathy/indifference (p < 0.001), agitation/aggression (p = 0.019) and irritability/lability (p = 0.027). CONCLUSIONS: Caregivers' gender, patients who attended Day Care Center and neuropsychiatric symptoms were differentiating factors in the burden of Brazilian and Spanish caregivers.

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.

Awareness of disease is different for cognitive and functional aspects in mild Alzheimer's disease: a one-year observation study.

Awareness of disease can be compromised to some degree in a proportion of people with dementia, with evident differences across domains. We designed this study to determine the factors associated with the impairment of awareness over a period of time. Using a longitudinal design, 69 people with mild Alzheimer's disease and their family caregivers completed the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, the Quality of Life in Alzheimer's Disease Scale, the Mini-Mental State Examination, the Clinical Dementia Rating Scale, the Cornell Scale for Depression in Dementia, the Pfeffer Functional Activities Questionnaire, the Neuropsychiatric Inventory, and the Zarit Burden Interview. Univariate and logistic regression analyses were conducted to examine the contribution of the various factors. The level of awareness of disease was significantly lower (p ≤ 0.001) between baseline and at follow up. At follow up, there was no change in the level of awareness of disease in 61.8%, whereas 25.4% worsened. However, the level of awareness improved in 12.3%. Logistic regression demonstrated that functional deficits (OR = 1.12, 95% CI: (1.03-1.22), p ≤ 0.01), and caregivers' quality of life (OR = 0.83, 95% CI: (0.70-0.98), p ≤ 0.05) were a significant predictor of impaired awareness of disease. The results confirmed that awareness and cognition are relatively independent, and showed that in people with mild dementia, unawareness is mainly manifested by poor recognition of changes in the activities of daily living, and decrease in quality of life.

Spouse-caregivers' quality of life in Alzheimer's disease.

BACKGROUND: The relationship between sexuality and quality of life (QoL) of spouse-caregivers remains unclear. We designed this study to evaluate the relationship between sexual satisfaction and spouse-caregivers' QoL, and to determine the influence of the clinical characteristics of people with dementia (PWD) on spouse-caregivers' self-reported QoL. METHODS: Using a cross-sectional design, 54 PWD and their spouse-caregivers completed the QoL in Alzheimer's Disease scale (QoL-AD), questionnaire on sexual experience and satisfaction (QSES), Mini-Mental State Examination (MMSE), Clinical Dementia Rating scale (CDR), Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), Pfeffer functional activities questionnaire (FAQ), the Cornell scale for depression in dementia (CSDD) and Zarit burden interview (ZBI). Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse-caregivers' QoL ratings. RESULTS: We did not find a significant difference in QoL between male and female spouse-caregivers (p = 0.71). We also found that 13% of males and 48.1% of females demonstrated moderate to severe sexual dissatisfaction. However, we did not find a significant correlation between spouse-caregivers' QoL and sexual satisfaction (p = 0.41). The linear regression indicated that impaired awareness and lower QoL of PWD were significantly related to spouse-caregivers' QoL (p = 0.000). CONCLUSIONS: The spouse-caregivers' QoL is influenced by awareness of disease and PWD QoL. Our study would be helpful for the development of adequate psycho-educational approaches to increase spouse-caregivers' QoL, considering the specificities of the couples' relationship.

Awareness of disease in dementia: factor structure of the assessment scale of psychosocial impact of the diagnosis of dementia.

Despite the growing understanding of the conceptual complexity of awareness, there currently exists no instrument for assessing different domains of awareness in dementia. In the current study, the psychometric properties of a multidimensional awareness scale, the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), are explored in a sample of 201 people with dementia and their family caregivers. Cronbach's alpha was high (α = 0.87), indicating excellent internal consistency. The mean of corrected item-total correlation coefficients was moderate. ASPIDD presented a four-factor solution with a well-defined structure: awareness of activities of daily living, cognitive functioning and health condition, emotional state, and social functioning and relationships. Functional disability was positively correlated with total ASPIDD, unawareness of activities of daily living, cognitive functioning, and with emotional state. Caregiver burden was correlated with total ASPIDD scores and unawareness of cognitive functioning. The results suggest that ASPIDD is indeed a multidimensional scale, providing a reliable measure of awareness of disease in dementia. Further studies should explore the risk factors associated with different dimensions of awareness in dementia.