The relationship between burden and caregiver's sleep disturbances in dementia: a systematic review.

Caregivers of people living with dementia (PLwD) have a high burden degree that leads to health issues, including sleep. Objective: This study aimed to analyze the impacts of the caregiving burden on caregiver's sleep disturbances. Methods: This systematic review involved a qualitative analysis of publications on Web of Science and Pubmed/Medline databases published between February 2018 and August 2022. Results: A total of 27 studies were identified and analyzed. Caregiver's sleep presents impairments in sleep latency, sleep fragmentation, sleep duration, subjective sleep quality, daytime dysfunction, and insomnia. Caregiver's distress and depressive symptoms have a dual relationship with sleep problems. Conclusion: Sleep disturbances presented by caregivers are correlated with higher burden levels and lead to more vulnerability to psychiatric symptoms and health issues.

Cuidadores de pessoas com demência possuem alto grau de sobrecarga que impacta de forma objetiva o sono e suas dimensões. Objetivo: Este estudo teve o objetivo de analisar o impacto da sobrecarga nas alterações do sono do cuidador. Métodos: Esta revisão sistemática envolveu a análise de resultados quantitativos e qualitativos de publicações das bases de dados Web of Science e PubMed/ Medical Literature Analysis and Retrieval System Online (Medline) publicadas entre fevereiro de 2018 e agosto de 2022. Resultados: O total de 27 estudos foi identificado e analisado. Cuidadores apresentam prejuízos na latência, fragmentação, duração e qualidade subjetiva do sono, disfunção diurna e insônia. O estresse e sintomas depressivos apresentados pelo cuidador possuem com o sono uma relação bidirecional. Conclusão: Os distúrbios do sono apresentados pelos cuidadores estão correlacionados com o alto nível de sobrecarga e geram maior vulnerabilidade para sintomas psiquiátricos e problemas de saúde.

A Longitudinal Evaluation of the Pattern of Social Cognition Impairment in Brazilians With Alzheimer's Disease.

BACKGROUND: Social cognition (SC) impairments contribute to the dependence of people with Alzheimer disease (AD), influencing their functional disability and the burden on family members and caregivers. Our objective was to longitudinally investigate the relationship between SC and cognitive and clinical variables in persons with AD and their caregivers. We also evaluated the different SC predictors from 3 perspectives: people with AD, caregivers of people with AD, and discrepancy analysis. METHODS: In all, 137 dyads (people with AD and their caregivers) underwent 2 assessments: at baseline (M1) and after 1 year (M2). During follow-up, 58 dyads were excluded, and the study was thus concluded with 79. RESULTS: Longitudinal analysis of the people with AD showed that while some cognitive functions declined (which is consistent with disease progression), SC impairments showed a more stable pattern. Another interesting result was related to SC predictors. For people with AD, SC was associated with cognition at both time points. For caregivers, besides cognition, other predictors included reduced functional abilities and quality of life in people with AD. These results are consistent with the discrepancy predictors. CONCLUSION: The stable pattern in SC functioning over 12 months in AD suggests that this neurocognitive domain may be influenced more by emotional processing than by cognitive impairment. In addition, the SC predictors showed that the investigation of different points of view enables a more global understanding, contributing to better and more targeted treatment for the patient.

"Sexual activity for me is something else. It's the same as always: Sex aside and our love for each other." Changes in sexual activity in dementia from the view of spouse-carers'.

The study aimed to explore the impact of Alzheimer's disease (AD) on spouse-carer's lives and the ways it affects their marital relationship and sexual activity. Data were obtained from qualitative interviews conducted with 11 spouse-carers of people with AD. Using interpretative phenomenological analysis (IPA), three themes emerged: psychological and emotional impact, social impact, and sexual impact. Some spouse-carers reported stress, poor emotional well-being, frustration, doubts about how to deal with the situation, sadness, loneliness, perception of losing connection with the partner, and feelings of companionship disappearing. Meanwhile, other spouse-carers reported closer relations and greater affection for their care-recipients after the diagnosis. Changes in sexual activity were attributed to aging and/or the effects of the illness. Gender influenced the perception of changes in the marital relationship but not in sexual activity. Participants reported conflicting perspectives towards the importance of sexual activity in the marital relationship and the replacement of sexual intercourse with other modes of expressing affection. We believe that understanding the specificities of marital relationships of couples in whom one spouse was diagnosed with AD would be helpful for developing coping strategies for persons living with dementia and their spouses.

Awareness of Disease and Its Domains in Young-onset and Late-onset Dementia: The Role of Executive Function.

INTRODUCTION: Executive function (EF) involves a general cognitive process linked to strategic organization and control of complex goal-oriented tasks. In young-onset dementia (YOD), especially Alzheimer's disease, the symptoms that stand out in the initial stage are deficits in attention, visual-spatial function, praxis, and language. The present study aims to investigate what components of EF differ in young and late-onset dementia (LOD) and its impact on awareness and its domains. METHODS: Using a cross-sectional design, we included 44 people with YOD and 70 with LOD. We assessed awareness and its domains, cognition, dementia severity, EF, functionality, and neuropsychiatric symptoms. RESULTS: The YOD group was more impaired in general cognition ( P =0.017) and had a worse performance in Wechsler Digit Span Backward (DSB) ( P =0.007) and Phonemic fluency task (FAS) ( P =0.046) tests. In the LOD group, deficits in EF had a greater impact on awareness and on most domains (awareness total score, cognitive functioning and health condition, functional activity impairments and social function). CONCLUSIONS: Our study findings support the heterogeneity of awareness, not only with regard to the difference between the domains and the measures of EF, but also to the groups studied.

The relationship between burden and caregiver's sleep disturbances in dementia: a systematic review / A relação entre sobrecarga e sono do cuidador na demência: um estudo de revisão sistemática

ABSTRACT Caregivers of people living with dementia (PLwD) have a high burden degree that leads to health issues, including sleep. Objective: This study aimed to analyze the impacts of the caregiving burden on caregiver's sleep disturbances. Methods: This systematic review involved a qualitative analysis of publications on Web of Science and Pubmed/Medline databases published between February 2018 and August 2022. Results: A total of 27 studies were identified and analyzed. Caregiver's sleep presents impairments in sleep latency, sleep fragmentation, sleep duration, subjective sleep quality, daytime dysfunction, and insomnia. Caregiver's distress and depressive symptoms have a dual relationship with sleep problems. Conclusion: Sleep disturbances presented by caregivers are correlated with higher burden levels and lead to more vulnerability to psychiatric symptoms and health issues.

RESUMO Cuidadores de pessoas com demência possuem alto grau de sobrecarga que impacta de forma objetiva o sono e suas dimensões. Objetivo: Este estudo teve o objetivo de analisar o impacto da sobrecarga nas alterações do sono do cuidador. Métodos: Esta revisão sistemática envolveu a análise de resultados quantitativos e qualitativos de publicações das bases de dados Web of Science e PubMed/ Medical Literature Analysis and Retrieval System Online (Medline) publicadas entre fevereiro de 2018 e agosto de 2022. Resultados: O total de 27 estudos foi identificado e analisado. Cuidadores apresentam prejuízos na latência, fragmentação, duração e qualidade subjetiva do sono, disfunção diurna e insônia. O estresse e sintomas depressivos apresentados pelo cuidador possuem com o sono uma relação bidirecional. Conclusão: Os distúrbios do sono apresentados pelos cuidadores estão correlacionados com o alto nível de sobrecarga e geram maior vulnerabilidade para sintomas psiquiátricos e problemas de saúde.

Quality of Life of People With Alzheimer Disease: Comparison Between Dyads Degree of Kinship.

The quality of life (QoL) of people with Alzheimer disease (PwAD) may be influenced by the type of relationship between carer and the PwAD. Dyads of 98 PwAD/carers (N = 49 spouse-carers; N = 49 nonspouses carers) were measured about QoL, cognition, dementia severity, awareness of disease, functionality, depression, anxiety, and burden of care. Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse and nonspouse self-report PwAD QoL (PQOL) and to compare carers' ratings of PwAD QoL (C-PQOL). The total score of QoL for spouse and nonspouse PwAD showed no significant difference (P = .29). The linear regression demonstrated that higher awareness of disease was significantly related to spouse PQOL (P = .001). Nonspouse PQOL was negatively related to lower depression (P = .007). The total score of QoL for spouse and nonspouse C-PQOL showed no significant difference (P = .14). The linear regression demonstrated that depression of spouse-PwAD (P < .001) and burden of care (P = .001) were negatively related to spouse-dyads' C-PQOL. The nonspouse-dyads C-PQOL was negatively related to depression of nonspouse-PwAD (P < .001), awareness of disease (P = .001), and the mood of the carer (P = .01). Spouse and nonspouse PwAD evaluate PQOL better than carers (C-PQOL). No significant difference was found in the total PQOL and C-PQOL of spouse and nonspouse, but dyads evaluated differently about what is important to assess QoL.

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.

Cross-cultural adaptation of the Social and Emotional Questionnaire on Dementia for the Brazilian population.

CONTEXT AND OBJECTIVE: Impairments in social and emotional functioning may affect the communication skills and interpersonal relationships of people with dementia and their caregivers. This study had the aim of presenting the steps involved in the cross-cultural adaptation of the Social and Emotional Questionnaire (SEQ) for the Brazilian population. DESIGN AND SETTING: Cross-cultural adaptation study, conducted at the Center for Alzheimer's Disease and Related Disorders in a public university. METHODS: The process adopted in this study required six consecutive steps: initial translation, translation synthesis, back translation, committee of judges, pretesting of final version and submission to the original author. RESULTS: In general, the items had semantic, idiomatic, conceptual and experiential equivalence. During the first pretest, people with dementia and their caregivers had difficulties in understanding some items relating to social skills, which were interpreted ambiguously. New changes were made to allow better adjustment to the target population and, following this, a new pretest was performed. This pre-test showed that the changes were relevant and gave rise to the final version of the instrument. There was no correlation between education level and performance in the questionnaire, among people with dementia (P = 0.951). CONCLUSION: The Brazilian Portuguese version of the Social and Emotional Questionnaire was well understood and, despite the cultural and linguistic differences, the constructs of the original version were maintained.

Facial expression recognition in Alzheimer's disease: a longitudinal study.

Facial recognition is one of the most important aspects of social cognition. In this study, we investigate the patterns of change and the factors involved in the ability to recognize emotion in mild Alzheimer's disease (AD). Through a longitudinal design, we assessed 30 people with AD. We used an experimental task that includes matching expressions with picture stimuli, labelling emotions and emotionally recognizing a stimulus situation. We observed a significant difference in the situational recognition task (p ≤ 0.05) between baseline and the second evaluation. The linear regression showed that cognition is a predictor of emotion recognition impairment (p ≤ 0.05). The ability to perceive emotions from facial expressions was impaired, particularly when the emotions presented were relatively subtle. Cognition is recruited to comprehend emotional situations in cases of mild dementia.

Facial expression recognition in Alzheimer’s disease: a longitudinal study / Reconhecimento da expressão facial na doença de Alzheimer: um estudo longitudinal

Facial recognition is one of the most important aspects of social cognition. In this study, we investigate the patterns of change and the factors involved in the ability to recognize emotion in mild Alzheimer’s disease (AD). Through a longitudinal design, we assessed 30 people with AD. We used an experimental task that includes matching expressions with picture stimuli, labelling emotions and emotionally recognizing a stimulus situation. We observed a significant difference in the situational recognition task (p ≤ 0.05) between baseline and the second evaluation. The linear regression showed that cognition is a predictor of emotion recognition impairment (p ≤ 0.05). The ability to perceive emotions from facial expressions was impaired, particularly when the emotions presented were relatively subtle. Cognition is recruited to comprehend emotional situations in cases of mild dementia.

O reconhecimento da expressão facial é um dos aspectos mais importantes relacionados à cognição social. Foram investigados os padrões de mudança e os fatores envolvidos na habilidade de reconhecer emoções na doença de Alzheimer (DA) leve. Em um estudo longitudinal foram avaliadas 30 pessoas com DA. Para a avaliação da capacidade de reconhecimento facial na DA foi utilizada uma tarefa experimental que inclui a combinação de expressões com uma figura estímulo, rotulação da emoção e reconhecimento emocional de uma situação estímulo. Foi encontrada diferença significativa entre os momentos 1 e 2 na tarefa de reconhecimento situacional (p ≤ 0.05). A regressão linear mostrou que a cognição (p ≤ 0.05) é o fator preditor para o prejuízo do reconhecimento emocional, o que sugere um recrutamento da cognição para a compreensão de situações emocionais mais complexas. Houve comprometimento na percepção de emoções em expressões faciais, particularmente, quando as emoções eram sutis.

Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants.

INTRODUCTION: Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience. OBJECTIVE: This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia. METHODS: Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia. RESULTS AND CONCLUSIONS: Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress.

Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants / Resiliência de cuidadores de pessoas com demência: revisão sistemática de determinantes biológicos e psicossociais

Introduction: Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience. Objective: This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia. Methods: Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia. Results and conclusions: Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress. .

Introdução: Apesar das dificuldades enfrentadas por cuidadores de pessoas com demência, sentimentos positivos quanto aos cuidados podem estar relacionados à resiliência. Objetivo: Revisamos sistematicamente a literatura sobre a conceituação, abordagens metodológicas e modelos determinantes relacionados à resiliência dos cuidadores de pessoas com demência. Métodos: Foi realizada uma busca por artigos publicados entre 2003 e 2014 nas bases de dados ISI, PubMed/MEDLINE, SciELO e Lilacs, usando os descritores resilience [resiliência], caregivers [cuidadores] e dementia [demência]. Resultados e conclusões: A resiliência foi definida como adaptação positiva para enfrentar adversidades, flexibilidade, bem-estar psicológico, força, vida saudável, sobrecarga, rede social e satisfação com o apoio social recebido. Não se encontrou consenso sobre o conceito de resiliência em relação à demência. As variáveis determinantes foram classificadas em modelos biológicos, psicológicos e sociais. Níveis mais altos de resiliência foram relacionados com taxas mais baixas de depressão e melhor saúde física. Os outros aspectos biológicos relacionados a níveis mais altos de resiliência foram idade avançada, etnia de origem africana e sexo feminino. Menos sobrecarga, estresse, neuroticismo e percepção de controle foram os principais aspectos psicológicos relacionados à resiliência. O apoio social foi um fator moderador da resiliência, pois uma variedade de tipos de apoio parece aliviar a sobrecarga física e mental causada pelo estresse. .

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.

Satisfação sexual na demência / Sexual satisfaction in dementia

CONTEXTO: A demência pode resultar em comprometimento da intimidade e sexualidade de casais idosos.OBJETIVOS: Avaliar alterações na atividade sexual, bem como os fatores de satisfação e/ou insatisfação sexual de casais nos quais um dos parceiros possua demência.MÉTODO: Busca nas bases de dados ISI, PubMed/Medline e SciELO de artigos sobre sexualidade na demência, entre janeiro de 1990 e março de 2012, utilizando as palavras-chave: "demência", "satisfação sexual", "intimidade" e "sexualidade".RESULTADOS: Foram encontrados 12 artigos. A sobrecarga de cuidados e a alteração de papéis na relação conjugal foram consideradas as principais causas para o declínio da atividade sexual. A disfunção erétil em pacientes e cônjuges, a capacidade decisória para o consentimento da relação sexual por parte do paciente demenciado e os problemas referentes à idade e à saúde (física e emocional) do cônjuge e/ou paciente foram os fatores associados à insatisfação sexual.CONCLUSÃO: A intimidade e a atividade sexual dos casais em que um dos parceiros é portador de demência são influenciadas negativamente pela relação de cuidados decorrente da doença e pela sobrecarga dos cônjuges. Por outro lado, a atividade sexual pode ser positivamente substituída por demonstrações de carinho e empatia entre os cônjuges.

BACKGROUND: Dementia may result on impairment in intimacy and sexuality of elderly couples.OBJECTIVES: Evaluate changes in sexual activity, as well as the factors which cause sexual satisfaction and/or dissatisfaction in couples in which one of the partners has dementia.METHOD: A search at ISI, PubMed/Medline and SciELO was made for articles about sexuality in dementia, from January 1990 to March 2012, using the keywords: "dementia", "sexual satisfaction", "intimacy" and "sexuality".RESULTS: Twelve articles were selected. The burden of care and the change of roles in couples' relationship were the main reasons for decrease of sexual activity. Erectile dysfunction in patients and spouses, the decision-making capacity for sexual relationship from the patient who has dementia and the problems related to age and health (physical and emotional) of spouses and/or patients were considered as reasons associated with sexual dissatisfaction.DISCUSSION: When one partner has dementia, the couples' intimacy and sexual activity are negatively influenced by the relationship of care related to the disease and by the spouse's burden. On the other hand, sexual activity may be positively replaced by displays of affection and empathy between the couple.