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OBJECTIVE: Awareness is a developing area in dementia research and the evaluation of its domains has been increasingly included as part of care for people with Alzheimer's disease (PwAD). Our aim is to examine whether executive dysfunction is associated with awareness domains. METHODS: A consecutive series of 75 people with mild-to-moderate Alzheimer's disease completed assessments about global cognitive function, executive functioning, and their awareness of disease. Their primary caregivers' dyad provided information about demographics, awareness of disease, dementia severity, neuropsychiatric symptoms, and functional status. RESULTS: Different types of executive dysfunction were presented as a predictor for awareness of disease (cognitive flexibility, inhibitory control, and working memory), of emotional state (short-term memory and attention) and of social functioning and relationships (visuospatial organization, integrative functions, and abstract thinking). Awareness of cognitive functioning and health condition and of functional activity impairments exhibit only global cognitive function as a predictor. CONCLUSIONS: Findings confirm some degree of independence between awareness domains. The importance of identifying differences in domains of awareness relies in the understanding of awareness as a clinical phenomenon in order to guide the management and support of PwAD and their caregivers.
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Doença de Alzheimer , Disfunção Cognitiva , Cuidadores , Cognição , Função Executiva , Humanos , Testes NeuropsicológicosRESUMO
Leishmaniasis are a group of neglected infectious diseases caused by protozoa of the genus Leishmania with distinct presentations. The available leishmaniasis treatment options are either expensive and/or; cause adverse effects and some are ineffective for resistant Leishmania strains. Therefore, molecules derived from natural products as the monoterpene carvacrol, have attracted interest as promising anti-leishmania agents. However, the therapeutic use of carvacrol is limited due to its low aqueous solubility, rapid oxidation and volatilization. Thus, the development of nanostructured lipid carriers (NLCs) was proposed in the present study as a promising nanotechnology strategy to overcome these limitations and enable the use of carvacrol in leishmaniasis therapy. Carvacrol NLCs were obtained using a warm microemulsion method, and evaluated regarding the influence of lipid matrix and components concentration on the NLCs formation. NLCs were characterized by DSC and XRD as well. In addition, to the in vitro carvacrol release from NLCs, the in vitro cytotoxicity and leishmanicidal activity assays, and the in vivo pharmacokinetics evaluation of free and encapsulated carvacrol were performed. NLCs containing carvacrol were obtained successfully using a warm microemulsion dilution method. The NLCs formulation with the lowest particle size (98.42 ± 0.80 nm), narrowest size distribution (suitable for intravenous administration), and the highest encapsulation efficiency was produced by using beeswax as solid lipid (HLB=9) and 5% of lipids and surfactant. The in vitro release of carvacrol from NLCs was fitted to the Korsmeyer and Peppas, and Weibull models, demonstrating that the release mechanism is probably the Fickian diffusion type. Moreover, carvacrol encapsulation in NLCs provided a lower cytotoxicity in comparison to free carvacrol (p<0.05), increasing its in vitro leishmanicidal efficacy in the amastigote form. Finally, the in vivo pharmacokinetics of carvacrol after IV bolus administration suggests that this phenolic monoterpene undergoes enterohepatic circulation and therefore presented a long half-life (t1/2) and low clearance (Cl). In addition, C0, mean residence time (MRT) and Vdss of encapsulated carvacrol were higher than free carvacrol (p < 0.05), favoring a higher distribution of carvacrol in the target tissues. Thus, it is possible to conclude that the developed NLCs are a promising delivery system for leishmaniasis treatment.
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Antiprotozoários/administração & dosagem , Cimenos/administração & dosagem , Portadores de Fármacos/administração & dosagem , Leishmania/efeitos dos fármacos , Nanoestruturas/administração & dosagem , Animais , Antiprotozoários/sangue , Antiprotozoários/química , Antiprotozoários/farmacocinética , Sobrevivência Celular/efeitos dos fármacos , Cimenos/sangue , Cimenos/farmacocinética , Portadores de Fármacos/química , Portadores de Fármacos/farmacocinética , Liberação Controlada de Fármacos , Humanos , Leishmaniose/tratamento farmacológico , Lipídeos/administração & dosagem , Lipídeos/química , Lipídeos/farmacocinética , Macrófagos Peritoneais/efeitos dos fármacos , Masculino , Camundongos Endogâmicos BALB C , Nanoestruturas/química , Ratos Wistar , Células THP-1RESUMO
Objectives: Awareness is considered a heterogeneous and non-linear phenomenon in dementia. We aim to investigate patterns of change of different domains of awareness (awareness of cognitive functioning and health condition, activities of daily living, emotional state, social functioning, and relationships) in people with mild and moderate Alzheimer's disease (AD) and aspects related to each domain.Method: Cross-sectional assessment of dyads of people with AD (PwAD) and caregivers (n = 128; CDR1 = 74, CDR2 = 54). PwAD completed assessments about quality of life, cognition and their awareness of disease. Caregivers provided information about PwAD and received quality of life and burden of care assessments.Results: Mild AD group showed a mildly impaired awareness (n = 40; 54.05%), while moderate AD group, showed higher presence of moderately impaired awareness (n = 22; 40.74%). There was a significant difference between groups in awareness of cognitive functioning and health condition (p < 0.004), functional activity impairments (p < 0.001) and total score of awareness (p < 0.01). Conversely, awareness of emotional state (p = 0.22) and of social functioning and relationship (p = 0.44) presented no significant difference between groups. Unawareness of functional activity impairments showed higher discrepancy scores between PwAD and caregivers in both groups.Conclusions: Significant differences were found only in patterns of discrepancies in awareness of cognitive functioning and health condition, of ADL and socio-emotional functioning. Different factors are related to different domains in mild and moderate group, reinforcing the heterogeneity of awareness in dementia. ADL deficits have an important role in awareness phenomenon, independent of the severity of disease.
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Doença de Alzheimer , Atividades Cotidianas , Conscientização , Cuidadores , Estudos Transversais , Humanos , Qualidade de VidaRESUMO
BACKGROUND: Quality of life (QoL) is a growing area of interest in dementia research. This study aims to investigate the caregivers' perspective about the QoL of people with young-onset Alzheimer disease (YOAD) and late-onset Alzheimer disease (LOAD). We also aim to investigate factors that might be associated to caregivers' perspective in YOAD and LOAD. METHODS: We included 110 people with Alzheimer disease (PwAD; 53 YOAD) and their primary caregivers. The PwAD completed assessments about their QoL and cognition. The caregivers provided information about the PwAD (demographics, QoL, ability to perform activities of daily living, mood, and dementia severity) and had burden of care assessed. RESULTS: We did not find a difference in caregivers' perspectives of PwAD QoL according to the age at onset. However, the linear regression analysis indicated that caregivers' burden ( P < .01) and PwAD depressive symptoms ( P < .05) were significantly related to the caregivers' perspective of YOAD QoL. Caregivers' burden ( P < .01), years of education ( P < .05), and self-reported QoL ( P < .01) were significantly related to the caregivers' perspective of LOAD QoL. CONCLUSIONS: The factors that drive the perceptions of caregivers of PwAD QoL may vary according to the age at onset. The study provides basic information on caregivers' perspectives of PwAD QoL to create more effective interventions according to the age at onset.
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Adaptação Psicológica , Doença de Alzheimer/diagnóstico , Cuidadores/psicologia , Depressão/complicações , Qualidade de Vida/psicologia , Atividades Cotidianas , Idade de Início , Idoso , Doença de Alzheimer/psicologia , Cognição , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica/estatística & dados numéricos , Análise de Regressão , AutorrelatoRESUMO
OBJECTIVES: We investigated the factors associated with discrepancies between patients' and caregivers' ratings about patients' general quality of life (QoL) and about the domains of Quality of Life in Alzheimer's disease (QoL-AD) Scale at baseline and 12 months. METHODS: This was a longitudinal study that comprised 114 outpatients with AD and their caregivers. Patients were assessed with the QoL-AD, Mini-mental State Examination, Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, Cornell Scale for Depression, Functional Activities Questionnaire, and Neuropsychiatric Inventory, and Clinical Dementia Rating Scale. Caregivers answered the QoL-AD, Zarit Burden Interview and Sociodemographic Questionnaire. RESULTS: Linear regression analyses indicated that the factors associated with discrepancies of patients' and caregivers' ratings of patients' QoL-AD were impaired awareness and caregiver burden at baseline and impaired awareness at 12 months. Moreover, the factor associated with discrepancies in the domain memory was impaired awareness and in the domain ability to do chores, impaired awareness and functional deficit. CONCLUSIONS: The discrepancies between patients and caregivers were related to awareness and caregiver burden at baseline and to awareness at 12 months. These results raise questions regarding the subjective nature of QoL and the validity of patients' evaluation of their own QoL.
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Doença de Alzheimer/psicologia , Cuidadores/psicologia , Qualidade de Vida/psicologia , Atividades Cotidianas/psicologia , Idoso , Conscientização , Brasil , Escalas de Graduação Psiquiátrica Breve , Feminino , Humanos , Estudos Longitudinais , Masculino , Inquéritos e QuestionáriosRESUMO
Decision-making is considered a fundamental aspect of personal autonomy and can be affected in psychiatric and neurologic diseases. It has been shown that cognitive deficits in dementia impact negatively on decision-making. Moreover, studies highlighted impaired clinical competence in neuropsychiatric disorders, such as schizophrenia and bipolar disorder. In this context, the current study explored the relationship between behavioral and psychological symptoms of dementia (BPSD) and clinical competence, especially the capacity to consent to treatment, in Alzheimer's disease (AD). Seventy-one patients with mild to moderate AD participated, completing assessments for capacity to consent to treatment, general cognition and neuropsychiatric disturbances. For each neuropsychiatric symptom, patients with and without the particular disturbance were compared on the different subscales of the MacArthur Competence Tool for Treatment (MacCAT-T; Understanding, Appreciation, Reasoning and Expression). The results showed that patients presenting delusions, as well as apathetic patients, had a lower ability to express a clear treatment choice compared to patients without these symptoms. By contrast, patients with dysphoria/depression had higher scores on this variable. Additionally, AD patients with euphoria had more difficulties discussing consequences of treatment alternatives compared to patients without this disturbance. None of the differences were confounded by global cognition. There were no between-group differences in clinical decision-making for patients with hallucinations, agitation/aggression, anxiety, irritability, disinhibition and aberrant motor behavior. These findings highlight the importance of taking BPSD into account when assessing decision-making capacity, especially clinical competence, in AD. Furthermore, reducing BPSD may lead to better clinical competence in patients with AD, as well as to improvements in patients and caregivers' quality of life.
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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.
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Doença de Alzheimer/psicologia , Cuidadores/psicologia , Orgasmo , Comportamento Sexual/estatística & dados numéricos , Cônjuges/psicologia , Idoso , Idoso de 80 Anos ou mais , Conscientização , Brasil , Emoções , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Escalas de Graduação Psiquiátrica , Qualidade de Vida/psicologia , Índice de Gravidade de DoençaRESUMO
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.
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Humanos , Masculino , Feminino , Idoso , Idoso de 80 Anos ou mais , Qualidade de Vida/psicologia , Cuidadores/psicologia , Cognição/fisiologia , Doença de Alzheimer/psicologia , Escalas de Graduação Psiquiátrica , Fatores Socioeconômicos , Conscientização , Atividades Cotidianas , Análise Multivariada , Seguimentos , Estudos Longitudinais , Autorrelato , Doença de Alzheimer/fisiopatologiaRESUMO
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.
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Cuidadores/psicologia , Efeitos Psicossociais da Doença , Comparação Transcultural , Demência/enfermagem , Idoso , Idoso de 80 Anos ou mais , Brasil , Estudos Transversais , Demência/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Escalas de Graduação Psiquiátrica , Análise de Regressão , Índice de Gravidade de Doença , EspanhaRESUMO
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.
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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.
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Doença de Alzheimer/psicologia , Cuidadores/psicologia , Cognição/fisiologia , Qualidade de Vida/psicologia , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/fisiopatologia , Conscientização , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Análise Multivariada , Escalas de Graduação Psiquiátrica , Autorrelato , Fatores SocioeconômicosRESUMO
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.
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Cuidadores/psicologia , Demência/terapia , Família/psicologia , Adulto , Idade de Início , Idoso , Efeitos Psicossociais da Doença , Demência/economia , Emoções , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Narração , Isolamento Social/psicologia , Apoio SocialRESUMO
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.
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.
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Humanos , Masculino , Feminino , Adulto , Idoso , Família/psicologia , Cuidadores/psicologia , Demência/terapia , Isolamento Social/psicologia , Apoio Social , Entrevistas como Assunto , Efeitos Psicossociais da Doença , Idade de Início , Demência/economia , Narração , Emoções , Pessoa de Meia-IdadeRESUMO
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.
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Atividades Cotidianas/psicologia , Doença de Alzheimer/psicologia , Conscientização , Cognição , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/diagnóstico , Cuidadores/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Testes Neuropsicológicos , Escalas de Graduação Psiquiátrica , Índice de Gravidade de DoençaRESUMO
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.
Assuntos
Doença de Alzheimer/terapia , Cuidadores/psicologia , Qualidade de Vida , Cônjuges/psicologia , Atividades Cotidianas/psicologia , Idoso , Doença de Alzheimer/psicologia , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Testes Psicológicos , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Atividades Cotidianas/psicologia , Conscientização/fisiologia , Sintomas Comportamentais/etiologia , Transtornos Cognitivos/etiologia , Demência/diagnóstico , Demência/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Demência/enfermagem , Análise Fatorial , Feminino , Humanos , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Escalas de Graduação Psiquiátrica , Índice de Gravidade de Doença , Adulto JovemRESUMO
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.
RESUMO
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.
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.
Assuntos
Humanos , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/ética , Demência/diagnóstico , Demência/patologia , Doença de Alzheimer/complicações , Pesquisa QualitativaRESUMO
Recent reports indicate that Leishmania chagasi has tropism to the male canine genital system, which is associated with shedding of the organism in the semen, supporting the hypothesis of venereal transmission. The aim of this study was to describe the lesions and assess parasite load in the genital system of bitches with canine visceral leishmaniasis (CanL). Symptomatic (n=5) and asymptomatic (n=5) bitches seropositive for CanL were randomly selected at the Center for Zoonosis Control (Belo Horizonte, State of Minas Gerais, Brazil). Five serologically negative, healthy, adult bitches also from the CZC were used as controls. Samples from genital organs (vulva, vagina, cervix, uterine body, uterine horns, uterine tubes, and ovaries), liver, and spleen were histologically evaluated and processed for immunodetection of Leishmania sp., and PCR. The most significant histological change was a mild to moderate vulvar dermatitis, characterized by a histio-plasma-lymphocytic infiltrate. This change was detected in all asymptomatic, four symptomatic, and three uninfected control bitches. In one symptomatic and one asymptomatic bitch intracytoplasmic amastigotes were observed within macrophages in the inflammatory infiltrate. Samples from all the segments of the genital tract were positive in at least one infected animal, in the absence of detectable amastigotes in the tissue. These findings support the notion that L. chagasi does not have genital tropism in the bitch, which is in contrast to our previous findings in naturally infected male intact dogs.