Measures of Awareness in Alzheimer's Disease and Clinical Differences Between Groups with Preserved, Impaired, and Absent Awareness.

Background: Awareness is a heterogeneous construct that requires accurate assessment. There is no consensus on the best methodology for capturing the phenomenon, thus leading to inconsistent results in this area. Objective: We aim to evaluate the reliability of clinicians' ratings and a discrepancy assessment method, examining groups of people with Alzheimer's disease (PwAD) according to their degree of awareness and demographic and clinical aspects. Methods: We cross-sectionally assessed 134 PwAD and their caregivers. Individuals' level of awareness was assessed with two methods: clinicians' ratings identified three groups (preserved awareness, impaired awareness, and absent awareness), while discrepancy assessment identified four groups (preserved awareness, mildly impaired awareness, moderately impaired awareness, and absent awareness). Results: Clinicians' ratings showed significant differences between PwAD with preserved, impaired, and absent awareness groups in cognition, functionality, and neuropsychiatric symptoms. There was a significant difference in caregivers' anxiety between the impaired and absent awareness groups. Discrepancy assessment showed no clinical differences between the preserved and mildly impaired awareness groups or between the absent and moderately impaired awareness groups. A significant difference in functionality was observed between the other groups. Conclusions: Clinical aspects of each measure tended to differ between the chosen methods. Impairments in awareness fluctuate despite disease progression. Cognition and severity of disease cannot explain deficits in awareness.

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.

'I do not enjoy too much being with people, it takes me a long time to interact': a qualitative analysis of awareness of relationships in people with dementia.

OBJECTIVES: To investigate the presence of awareness of changes in relationships domain, and additional subdomains (cognitive, emotional and functional status) in a group of participants with dementia. METHOD: Using a qualitative design, 9 participants with mild and moderate dementia attended in a day care center were interviewed. Analyses were implemented throughout the modified version of the Grounded Theory Method. RESULTS: Some participants well-recognized changes in their relationships, albeit a tendency to immediately deny those changes was observed among them. The participants' reports showed that the kind of familiar or social relationship might facilitate the expression of awareness. Less discomfort in social interactions with familiars and friends compared to embarrassment with unfamiliar relationships were described. All participants could partially recognize their cognitive deficits, although attempts to normalize their condition and minimize difficulties were identified. Only two participants partially recognized changes in all investigated domains. The other participants partially described changes in two domains beyond the cognitive domain, such as relationships and emotional status or emotional and functional status. However, answers concerning emotional status reflected that some coping styles were not related to a general condition. CONCLUSION: The relationship domain may provide a valuable perspective of awareness of disease. People with dementia may feel less embarrassed to recognize deficits in the presence of familiars and friends.

Differences in the predictors of the resilience between carers of people with young- and late-onset dementia: a comparative study / Diferenças nos preditores da resiliência entre cuidadores de pessoas com demência de início precoce e tardio: um estudo comparativo

ABSTRACT Resilience is a subjective process related to both protective and risk factors, external and internal to the individual. Considering the psychosocial differences between young-onset dementia (YOD) and late-onset dementia (LOD) groups, carers' resilience may not be understood in the same way in both groups. Objective: The aim of this study was to compare the resilience of carers in YOD and LOD and to examine which factors might be associated with resilience in both groups of carers. Methods: The study was conducted with 120 people with dementia (49 YOD) and their primary carers. The carers had their resilience, quality of life, depressive symptoms, and burden assessed and answered the sociodemographic questionnaire. We assessed care recipients' global cognition, dementia severity, social cognition, facial expression recognition, awareness of disease, the ability to perform activities of daily living, depressive symptoms, and neuropsychiatric symptoms. For data analysis, unpaired two-tailed Student's t-test and linear regressions were conducted. Results: Resilience did not differ between groups (p=0.865). Resilience was inversely related to carers' depressive symptoms in both YOD (p=0.028) and LOD (p=0.005) groups. The carers' schooling (p=0.005), duration of disease (p=0.019), and depressive symptoms of care recipient (p<0.001) were related to carers' resilience only in LOD group. Conclusions: The context of care, clinical status of the care recipient, and mental health resources affected the carers' resilience in the LOD group. Conversely, resilience seems to be affected only by carers' mental health in the YOD group. The understanding of these differences is crucial for the developing of intervention strategies.

RESUMO A resiliência é um processo subjetivo relacionado a fatores de proteção e risco, externos e internos ao indivíduo. Considerando as diferenças psicossociais entre demência de início precoce (DIP) e demência de início tardio (DIT), a resiliência dos cuidadores pode não ser entendida da mesma maneira em ambos os grupos. Objetivo: O objetivo deste estudo é comparar a resiliência de cuidadores de DIP e DIT e examinar quais fatores poderiam estar associados à resiliência em ambos os grupos de cuidadores. Métodos: O estudo foi realizado com 120 pacientes com demência (49 DIP) e seus cuidadores primários. Os cuidadores tiveram sua resiliência, qualidade de vida, sintomas depressivos e sobrecarga avaliados e responderam ao questionário sociodemográfico. Avaliou-se a cognição global, a severidade da demência, a cognição social, o reconhecimento da expressão facial, a consciência da doença, a funcionalidade em atividades de vida diária, e os sintomas depressivos e neuropsiquiátricos dos pacientes. Para a análise dos dados, foram realizados teste t de Student bicaudal não pareado e regressões lineares. Resultados: Não houve diferença na resiliência entre os grupos (p=0,865). A resiliência foi inversamente relacionada com sintomas depressivos dos cuidadores em DIP (p=0,028) e DIT (p=0,005). A escolaridade do cuidador (p=0,005), tempo de doença (p=0,019) e sintomas depressivos dos pacientes (p<0,001) foram relacionados à resiliência apenas no grupo DIT. Conclusões: O contexto do cuidado, o estado clínico do paciente e os recursos de saúde mental afetaram a resiliência do cuidador no grupo DIT. Em contrapartida, a resiliência parece ser afetada apenas pela saúde mental do cuidador em DIP. O entendimento dessas diferenças é crucial para o desenvolvimento de estratégias de intervenção.

Differences in the predictors of the resilience between carers of people with young- and late-onset dementia: a comparative study.

Resilience is a subjective process related to both protective and risk factors, external and internal to the individual. Considering the psychosocial differences between young-onset dementia (YOD) and late-onset dementia (LOD) groups, carers' resilience may not be understood in the same way in both groups. Objective: The aim of this study was to compare the resilience of carers in YOD and LOD and to examine which factors might be associated with resilience in both groups of carers. Methods: The study was conducted with 120 people with dementia (49 YOD) and their primary carers. The carers had their resilience, quality of life, depressive symptoms, and burden assessed and answered the sociodemographic questionnaire. We assessed care recipients' global cognition, dementia severity, social cognition, facial expression recognition, awareness of disease, the ability to perform activities of daily living, depressive symptoms, and neuropsychiatric symptoms. For data analysis, unpaired two-tailed Student's t-test and linear regressions were conducted. Results: Resilience did not differ between groups (p=0.865). Resilience was inversely related to carers' depressive symptoms in both YOD (p=0.028) and LOD (p=0.005) groups. The carers' schooling (p=0.005), duration of disease (p=0.019), and depressive symptoms of care recipient (p<0.001) were related to carers' resilience only in LOD group. Conclusions: The context of care, clinical status of the care recipient, and mental health resources affected the carers' resilience in the LOD group. Conversely, resilience seems to be affected only by carers' mental health in the YOD group. The understanding of these differences is crucial for the developing of intervention strategies.

A resiliência é um processo subjetivo relacionado a fatores de proteção e risco, externos e internos ao indivíduo. Considerando as diferenças psicossociais entre demência de início precoce (DIP) e demência de início tardio (DIT), a resiliência dos cuidadores pode não ser entendida da mesma maneira em ambos os grupos. Objetivo: O objetivo deste estudo é comparar a resiliência de cuidadores de DIP e DIT e examinar quais fatores poderiam estar associados à resiliência em ambos os grupos de cuidadores. Métodos: O estudo foi realizado com 120 pacientes com demência (49 DIP) e seus cuidadores primários. Os cuidadores tiveram sua resiliência, qualidade de vida, sintomas depressivos e sobrecarga avaliados e responderam ao questionário sociodemográfico. Avaliou-se a cognição global, a severidade da demência, a cognição social, o reconhecimento da expressão facial, a consciência da doença, a funcionalidade em atividades de vida diária, e os sintomas depressivos e neuropsiquiátricos dos pacientes. Para a análise dos dados, foram realizados teste t de Student bicaudal não pareado e regressões lineares. Resultados: Não houve diferença na resiliência entre os grupos (p=0,865). A resiliência foi inversamente relacionada com sintomas depressivos dos cuidadores em DIP (p=0,028) e DIT (p=0,005). A escolaridade do cuidador (p=0,005), tempo de doença (p=0,019) e sintomas depressivos dos pacientes (p<0,001) foram relacionados à resiliência apenas no grupo DIT. Conclusões: O contexto do cuidado, o estado clínico do paciente e os recursos de saúde mental afetaram a resiliência do cuidador no grupo DIT. Em contrapartida, a resiliência parece ser afetada apenas pela saúde mental do cuidador em DIP. O entendimento dessas diferenças é crucial para o desenvolvimento de estratégias de intervenção.

Virtual day center for people with dementia and their caregivers during the COVID-19 pandemic / Centro dia virtual para pessoas com demência e seus cuidadores durante a pandemia COVID-19

ABSTRACT The coronavirus disease 2019 (COVID-19) pandemic suspended face-to-face assistance offered by community spaces, such as day centers (DCs). People with dementia (PwD) and their families were faced with the risks posed by social detachment and suspension of treatments. Objective: This study aimed to present a virtual day center (VDC) program offered as a preventive strategy to reduce the damage caused by social isolation and interruption of treatment imposed by the pandemic. Methods: The experience report, describing the feasibility of a VDC program, offered to 26 PwD and their caregivers, during the first year of the pandemic. The VDC held individual and group meetings with PwD and their families and psychoeducational support groups for caregivers. Results: The attendance rate in group activities was 80%, and that in the caregiver group was 68%, showing a good virtual interaction. Throughout the year, three PwD interrupted the service due to difficulties of the caregivers to reconcile the schedules of the activities with their professional commitments and the absence of a support network, three others died, and two were institutionalized. PwD remained physically, socially, and cognitively active through daily virtual activities. Guidance and support for caregivers contributed to the organization of routines and adaptation to the isolation and maintenance of the bond. Family meetings made it possible to mediate conflicts and expand the support network. Conclusions: VDC is a promising modality to assist the needs and demands of PwD and their caregivers. VDC can contribute to the expansion of this intervention to individuals and families who do not have access to face-to-face treatment.

RESUMO A pandemia da COVID-19 impôs a suspensão da assistência presencial oferecida por espaços comunitários, como centros dias. Pessoas com demência (PcD) e seus familiares enfrentam os riscos do distanciamento social e da suspensão dos tratamentos. Objetivos: Apresentar um programa de centro dia virtual (CDV) oferecido como estratégia preventiva para reduzir os danos causados pelo isolamento social e interrupção do tratamento impostos pela pandemia. Métodos: Relato de experiência, descrevendo a viabilidade de um programa VDC, oferecido a 26 PcD e seus cuidadores, durante o primeiro ano da pandemia. O CDV realizou reuniões individuais e em grupo com PcD e seus familiares e grupos de apoio psicoeducacional para cuidadores. Resultados: A taxa de comparecimento nas atividades em grupo foi de 80% e nos grupos de cuidadores foi 68%, demonstrando uma boa interação virtual. Ao longo do ano, três PcD interromperam o atendimento por dificuldade dos cuidadores em conciliar os horários das atividades com seus compromissos profissionais e ausência de rede de apoio, outros três faleceram e dois foram institucionalizados. PcD mantiveram-se física, social e cognitivamente ativas por meio de atividades virtuais diárias. A orientação e o apoio aos cuidadores contribuíram para a organização das rotinas, a adaptação ao isolamento e manutenção do vínculo. As reuniões familiares possibilitaram mediar conflitos e ampliar a rede de apoio. Conclusões: o CDV é uma modalidade promissora para atender às necessidades e demandas de PcD e seus cuidadores. O CDV pode contribuir para a expansão dessa intervenção a indivíduos e famílias que não têm acesso ao tratamento presencial.

Factor analysis of the Resilience Scale for Brazilian caregivers of people with Alzheimer's disease.

INTRODUCTION: Resilience is a dynamic process that acts to modify the effects of an adverse life event. In this study, we aimed to test the construct validity of the Resilience Scale by employing exploratory and confirmatory procedures, and to investigate the relationship between caregiver's resilience and clinical status of people with Alzheimer's disease. METHODS: A sample of 143 dyads of people with Alzheimer's disease and their primary caregivers were included. RESULTS: The total Resilience Scale mean score was 140.3 (standard deviation [SD] = 16.289), ranging from 25 to 175, indicating a high level of resilience. Cronbach's alpha was high (α = 0.77), indicating excellent internal consistency. The mean of corrected item-total correlation coefficients was moderate. The Resilience Scale presented a four-factor solution with a well-defined structure: sense of life and self-sufficiency, perseverance, self-confidence and equanimity, and meaningfulness. CONCLUSION: The findings indicate excellent internal consistency of the Resilience Scale when used to evaluate psychological and emotional difficulties of caregivers, even though the correlations observed between the Resilience Scale and clinical variables were not significant for functionality, mood, awareness, neuropsychiatric symptoms, or burden.

Domains of Awareness in Young and Late Onset Dementia.

BACKGROUND: There is a lack of research investigating whether there are differences in the domains of awareness according to the age at onset of dementia. OBJECTIVE: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life (QoL) in both groups. METHODS: A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and QoL. RESULTS: People with YOD had more neuropsychiatric symptoms than people with LOD. People with YOD were more aware of disease (total score), of their cognitive functioning and health condition and of their functional activity impairments, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and QoL has a greater relation to awareness for people with LOD. CONCLUSION: Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

Virtual day center for people with dementia and their caregivers during the COVID-19 pandemic.

The coronavirus disease 2019 (COVID-19) pandemic suspended face-to-face assistance offered by community spaces, such as day centers (DCs). People with dementia (PwD) and their families were faced with the risks posed by social detachment and suspension of treatments. Objective: This study aimed to present a virtual day center (VDC) program offered as a preventive strategy to reduce the damage caused by social isolation and interruption of treatment imposed by the pandemic. Methods: The experience report, describing the feasibility of a VDC program, offered to 26 PwD and their caregivers, during the first year of the pandemic. The VDC held individual and group meetings with PwD and their families and psychoeducational support groups for caregivers. Results: The attendance rate in group activities was 80%, and that in the caregiver group was 68%, showing a good virtual interaction. Throughout the year, three PwD interrupted the service due to difficulties of the caregivers to reconcile the schedules of the activities with their professional commitments and the absence of a support network, three others died, and two were institutionalized. PwD remained physically, socially, and cognitively active through daily virtual activities. Guidance and support for caregivers contributed to the organization of routines and adaptation to the isolation and maintenance of the bond. Family meetings made it possible to mediate conflicts and expand the support network. Conclusions: VDC is a promising modality to assist the needs and demands of PwD and their caregivers. VDC can contribute to the expansion of this intervention to individuals and families who do not have access to face-to-face treatment.

A pandemia da COVID-19 impôs a suspensão da assistência presencial oferecida por espaços comunitários, como centros dias. Pessoas com demência (PcD) e seus familiares enfrentam os riscos do distanciamento social e da suspensão dos tratamentos. Objetivos: Apresentar um programa de centro dia virtual (CDV) oferecido como estratégia preventiva para reduzir os danos causados pelo isolamento social e interrupção do tratamento impostos pela pandemia. Métodos: Relato de experiência, descrevendo a viabilidade de um programa VDC, oferecido a 26 PcD e seus cuidadores, durante o primeiro ano da pandemia. O CDV realizou reuniões individuais e em grupo com PcD e seus familiares e grupos de apoio psicoeducacional para cuidadores. Resultados: A taxa de comparecimento nas atividades em grupo foi de 80% e nos grupos de cuidadores foi 68%, demonstrando uma boa interação virtual. Ao longo do ano, três PcD interromperam o atendimento por dificuldade dos cuidadores em conciliar os horários das atividades com seus compromissos profissionais e ausência de rede de apoio, outros três faleceram e dois foram institucionalizados. PcD mantiveram-se física, social e cognitivamente ativas por meio de atividades virtuais diárias. A orientação e o apoio aos cuidadores contribuíram para a organização das rotinas, a adaptação ao isolamento e manutenção do vínculo. As reuniões familiares possibilitaram mediar conflitos e ampliar a rede de apoio. Conclusões: o CDV é uma modalidade promissora para atender às necessidades e demandas de PcD e seus cuidadores. O CDV pode contribuir para a expansão dessa intervenção a indivíduos e famílias que não têm acesso ao tratamento presencial.

Young- and Late-Onset Dementia: A Comparative Study of Quality of Life, Burden, and Depressive Symptoms in Caregivers.

OBJECTIVE: To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD). METHODS: Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers' quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed. RESULTS: A significant difference was found in caregivers' burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers' quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers' perspective of quality of life of care recipient and caregivers' hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers' burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers' burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers' depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers' depressive symptoms in both the groups. CONCLUSION: Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.

COVID-19: challenges for dementia care and research.

The COVID-19 pandemic has raised significant concerns about the management and care for people with dementia and their caregivers. In this context, this work will discuss how social isolation or social distancing caused by the pandemic may impact the clinical management of people with dementia, caregivers' health, and dementia research. The pandemic disrupts all forms of social interaction and may increase the behavioral impairment of people with dementia. Regarding pharmacological treatment, telemedicine is an option, but the context of social isolation raises questions about how to manage people with dementia with lack of cognitive stimulation and non-pharmacological treatment. In addition, the impact of the pandemic on caregivers should be considered. There is some evidence that telephone counseling can reduce depressive symptoms of caregivers of people with dementia. In dementia research, social isolation imposes researchers to modify their study protocols in order to continue collecting data by developing remote tools to assess the participants such as electronic informed consent and online questionnaires and tests. Thus, there is an urgent need for the evaluation and refinement of interventions to address several cognitive, behavioral, and clinical aspects of the long-term impact of the pandemic in dementia.

A pandemia causada pelo COVID-19 desencadeia grandes preocupações sobre o manejo e cuidados com as pessoas com demência e seus cuidadores. Neste contexto, discutiremos como o isolamento social causado pela pandemia pode impactar o manejo clínico de pessoas com demência, a saúde do cuidador e a pesquisa sobre demência. A pandemia interrompe todas as formas de interação social e pode causar aumento do comprometimento dos sintomas neuropsiquiátricos nas pessoas com demência. Em relação ao tratamento farmacológico, a telemedicina é uma opção, mas o contexto de isolamento social levanta questões sobre como manejar as pessoas com demência com falta de estimulação cognitiva ou intervenções nãofarmacológicas. Além disso, o impacto da pandemia sobre os cuidadores deve ser considerado. Existem evidências de que o aconselhamento telefônico pode reduzir os sintomas depressivos dos cuidadores. Além disso, o isolamento social impõe que pesquisadores modifiquem seus protocolos de pesquisa com o objetivo de continuar coletando dados, através do desenvolvimento de ferramentas remotas para avaliar os participantes, como o consentimento livre e esclarecido eletrônico e questionários e testes online. Assim, há uma necessidade urgente de avaliação e refinamento das intervenções para abordar aspectos cognitivos, comportamentais e clínicos do impacto de longo prazo da pandemia na demência.

COVID-19: challenges for dementia care and research / Covid-19: desafios para os cuidados e a pesquisa na demência

ABSTRACT. The COVID-19 pandemic has raised significant concerns about the management and care for people with dementia and their caregivers. In this context, this work will discuss how social isolation or social distancing caused by the pandemic may impact the clinical management of people with dementia, caregivers' health, and dementia research. The pandemic disrupts all forms of social interaction and may increase the behavioral impairment of people with dementia. Regarding pharmacological treatment, telemedicine is an option, but the context of social isolation raises questions about how to manage people with dementia with lack of cognitive stimulation and non-pharmacological treatment. In addition, the impact of the pandemic on caregivers should be considered. There is some evidence that telephone counseling can reduce depressive symptoms of caregivers of people with dementia. In dementia research, social isolation imposes researchers to modify their study protocols in order to continue collecting data by developing remote tools to assess the participants such as electronic informed consent and online questionnaires and tests. Thus, there is an urgent need for the evaluation and refinement of interventions to address several cognitive, behavioral, and clinical aspects of the long-term impact of the pandemic in dementia.

RESUMO. A pandemia causada pelo COVID-19 desencadeia grandes preocupações sobre o manejo e cuidados com as pessoas com demência e seus cuidadores. Neste contexto, discutiremos como o isolamento social causado pela pandemia pode impactar o manejo clínico de pessoas com demência, a saúde do cuidador e a pesquisa sobre demência. A pandemia interrompe todas as formas de interação social e pode causar aumento do comprometimento dos sintomas neuropsiquiátricos nas pessoas com demência. Em relação ao tratamento farmacológico, a telemedicina é uma opção, mas o contexto de isolamento social levanta questões sobre como manejar as pessoas com demência com falta de estimulação cognitiva ou intervenções nãofarmacológicas. Além disso, o impacto da pandemia sobre os cuidadores deve ser considerado. Existem evidências de que o aconselhamento telefônico pode reduzir os sintomas depressivos dos cuidadores. Além disso, o isolamento social impõe que pesquisadores modifiquem seus protocolos de pesquisa com o objetivo de continuar coletando dados, através do desenvolvimento de ferramentas remotas para avaliar os participantes, como o consentimento livre e esclarecido eletrônico e questionários e testes online. Assim, há uma necessidade urgente de avaliação e refinamento das intervenções para abordar aspectos cognitivos, comportamentais e clínicos do impacto de longo prazo da pandemia na demência.

Caregivers' resilience in mild and moderate Alzheimer's disease.

Objectives: To investigate the resilience of caregivers of people with mild and moderate Alzheimer's disease (PwAD) and the related sociodemographic and clinical characteristics.Methods: Cross-sectional assessment of dyads of PwAD and family caregivers (N = 106). Caregivers were assessed for resilience, depression, anxiety, hopelessness, quality of life, burden and cognition. PwAD were assessed for severity of dementia, cognition, neuropsychiatric symptoms, functionality, quality of life and awareness of disease.Results: Most of the caregivers (51.1%) reported emotional problems (symptoms of anxiety, stress and depression). In both mild (p < 0.05) and moderate (p < 0.05) PwAD groups, resilience was inversely related to self-reported emotional problems. There was not a significant difference between caregivers of mild and moderate PwAD resilience (p < 0.05). Upon analyzing the factors related to resilience, we found some differences between the groups of caregivers of mild and moderate PwAD. Neuropsychiatric symptoms of PwAD (p < 0.05) and caregiver's depressive symptoms (p < 0.05) were related to resilience of caregivers of mild PwAD. In the moderate group, caregivers' higher levels of quality of life (p < 0.05) and co-residing with PwAD (p < 0.05) were related to resilience.Conclusion: Caregivers' resilience is driven by different factors according to disease severity. The findings suggest that resilience allows caregivers to manage and respond positively to stressful demands of care.

Effectiveness of day care in supporting family caregivers of people with dementia: A systematic review.

Day care (DC) provides a break in daily care as a support strategy for family caregivers (FC) of people with dementia (PwD). OBJECTIVE: to analyze the support strategies used by the DC for FC, their methodological and theoretical models, as well as the respective benefits for FC burden, coping strategies and quality of life. METHODS: a systematic review following the Prisma methodology was performed on PubMed, PsycInfo, Scopus and SciELO electronic databases in August, 2018. The search keywords were "day care", "dementia" or Alzheimer disease, "caregiver", "quality of life" and "psychological adaptation". RESULTS: twenty-one studies were included. No randomized controlled trials were found. The provision of education, counseling and support, access to information, the professionals' expertise and the quality of their relationship with DC users were highlighted by caregivers. Compared to standard programs centering on PwD, the integrated program focused on PwD and FC activities showed increased feelings of competence and self-confidence of FC to postpone institutionalization. Heterogeneity in the structure and organization of the DC programs, intervention strategies and theoretical basis was observed. CONCLUSION: Integrated programs are a promising approach that addresses the needs and demands of PwD and their FC in a multidimensional manner.

O centro-dia (CD) permite uma pausa no cuidado diário como estratégia de apoio aos cuidadores familiares (CF) das pessoas com demência (PcD). OBJETIVO: analisar as estratégias de suporte aos CF oferecidas pelos CD, seus modelos metodológicos e teóricos, bem como os respectivos benefícios sobre sua sobrecarga, estratégias de enfrentamento e qualidade de vida. MÉTODOS: uma revisão sistemática utilizando a metodologia Prisma foi realizada nos bancos de dados eletrônicos PubMed, PsycInfo, Scopus e SciELO em agosto, 2018. As palavras chave da pesquisa foram "centro dia", "demência" ou doença de Alzheimer, "cuidador", "qualidade de vida" e "adaptação psicológica". RESULTADOS: vinte e um estudos foram incluídos. Não foram encontrados estudos randomizados. A oferta de educação, aconselhamento e apoio, o acesso a informações sobre a estrutura e o programa do CD, a expertise dos profissionais e a qualidade da relação destes com os usuários foram aspectos ressaltados pelos cuidadores. Comparados aos programas padrão centrados na PcD, estudos descrevendo o programa integrado, focado nas atividades para PcD e CF, mostraram um aumento no sentimento de competência e autoconfiança do CF e adiamento da institucionalização. Observou-se heterogeneidade na estrutura e organização dos programas de CD, nas estratégias de intervenção e nas bases teóricas. CONCLUSÃO: programas integrados são uma abordagem promissora que atende às necessidades e demandas das PcD e seus CF de forma multidimensional.

Effectiveness of day care in supporting family caregivers of people with dementia: A systematic review / Eficácia do centro dia no apoio a cuidadores familiares de pessoas com demência: uma revisão sistemática

ABSTRACT Day care (DC) provides a break in daily care as a support strategy for family caregivers (FC) of people with dementia (PwD). Objective: to analyze the support strategies used by the DC for FC, their methodological and theoretical models, as well as the respective benefits for FC burden, coping strategies and quality of life. Methods: a systematic review following the Prisma methodology was performed on PubMed, PsycInfo, Scopus and SciELO electronic databases in August, 2018. The search keywords were "day care", "dementia" or Alzheimer disease, "caregiver", "quality of life" and "psychological adaptation". Results: twenty-one studies were included. No randomized controlled trials were found. The provision of education, counseling and support, access to information, the professionals' expertise and the quality of their relationship with DC users were highlighted by caregivers. Compared to standard programs centering on PwD, the integrated program focused on PwD and FC activities showed increased feelings of competence and self-confidence of FC to postpone institutionalization. Heterogeneity in the structure and organization of the DC programs, intervention strategies and theoretical basis was observed. Conclusion: Integrated programs are a promising approach that addresses the needs and demands of PwD and their FC in a multidimensional manner.

RESUMO O centro-dia (CD) permite uma pausa no cuidado diário como estratégia de apoio aos cuidadores familiares (CF) das pessoas com demência (PcD). Objetivo: analisar as estratégias de suporte aos CF oferecidas pelos CD, seus modelos metodológicos e teóricos, bem como os respectivos benefícios sobre sua sobrecarga, estratégias de enfrentamento e qualidade de vida. Métodos: uma revisão sistemática utilizando a metodologia Prisma foi realizada nos bancos de dados eletrônicos PubMed, PsycInfo, Scopus e SciELO em agosto, 2018. As palavras chave da pesquisa foram "centro dia", "demência" ou doença de Alzheimer, "cuidador", "qualidade de vida" e "adaptação psicológica". Resultados: vinte e um estudos foram incluídos. Não foram encontrados estudos randomizados. A oferta de educação, aconselhamento e apoio, o acesso a informações sobre a estrutura e o programa do CD, a expertise dos profissionais e a qualidade da relação destes com os usuários foram aspectos ressaltados pelos cuidadores. Comparados aos programas padrão centrados na PcD, estudos descrevendo o programa integrado, focado nas atividades para PcD e CF, mostraram um aumento no sentimento de competência e autoconfiança do CF e adiamento da institucionalização. Observou-se heterogeneidade na estrutura e organização dos programas de CD, nas estratégias de intervenção e nas bases teóricas. Conclusão: programas integrados são uma abordagem promissora que atende às necessidades e demandas das PcD e seus CF de forma multidimensional.

Resilience in Carers of People With Young-Onset Alzheimer Disease.

Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health.

Coping strategies among caregivers of people with Alzheimer disease: a systematic review.

INTRODUCTION: Caregivers of people with Alzheimer disease (PwAD) report significant stress, burden and depression compared to caregivers of people with other dementias, especially when neuropsychiatric symptoms are prominent. Adequate coping strategies can modify the impact of stressful situations and increase the caregivers' quality of life. OBJECTIVE: To systematically review the different coping strategies used by caregivers of PwAD to manage neuropsychiatric symptoms. METHOD: We carried out electronic searches using MEDLINE (PubMed), SciELO, Web of Knowledge Cross Search (Thomson Scientific/ISI Web Services) and PsycINFO databases to select studies on coping in PwAD caregivers published from January 2005 to July 2017. The search terms were coping, caregivers, strategy, onset, adaptation, family, behavior, dementia and Alzheimer. The studies were organized in three categories: problem-focused, emotion-focused and dysfunctional coping strategies. RESULTS: We found 2,277 articles. After application of exclusion criteria and exclusion of redundant references, 24 articles were analyzed. Emotion-focused coping was the most commonly used strategy among PwAD caregivers. The use of this strategy associated with religion and spirituality may help reduce symptoms of depression and anxiety. Problem-focused coping strategies were mostly used with active coping interventions. Problem-solving coping may have buffered the impact of acute psychological stressors on procoagulant activity. Dysfunctional coping strategies were associated with increase of caregiver burden. CONCLUSION: The evaluated studies showed that the use and development of coping strategies may have ameliorated the depressive symptoms, anxiety and burden of caregivers. However, longitudinal studies are still needed that clearly describe the type of coping strategy used in relation to the presented results.

Coping strategies among caregivers of people with Alzheimer disease: a systematic review / Estratégias de coping entre cuidadores de pessoas com doença de Alzheimer: uma revisão sistemática

Abstract Introduction Caregivers of people with Alzheimer disease (PwAD) report significant stress, burden and depression compared to caregivers of people with other dementias, especially when neuropsychiatric symptoms are prominent. Adequate coping strategies can modify the impact of stressful situations and increase the caregivers' quality of life. Objective To systematically review the different coping strategies used by caregivers of PwAD to manage neuropsychiatric symptoms. Method We carried out electronic searches using MEDLINE (PubMed), SciELO, Web of Knowledge Cross Search (Thomson Scientific/ISI Web Services) and PsycINFO databases to select studies on coping in PwAD caregivers published from January 2005 to July 2017. The search terms were coping, caregivers, strategy, onset, adaptation, family, behavior, dementia and Alzheimer. The studies were organized in three categories: problem-focused, emotion-focused and dysfunctional coping strategies. Results We found 2,277 articles. After application of exclusion criteria and exclusion of redundant references, 24 articles were analyzed. Emotion-focused coping was the most commonly used strategy among PwAD caregivers. The use of this strategy associated with religion and spirituality may help reduce symptoms of depression and anxiety. Problem-focused coping strategies were mostly used with active coping interventions. Problem-solving coping may have buffered the impact of acute psychological stressors on procoagulant activity. Dysfunctional coping strategies were associated with increase of caregiver burden. Conclusion The evaluated studies showed that the use and development of coping strategies may have ameliorated the depressive symptoms, anxiety and burden of caregivers. However, longitudinal studies are still needed that clearly describe the type of coping strategy used in relation to the presented results.

Resumo Introdução Cuidadores de pessoas com doença de Alzheimer relatam mais estresse, sobrecarga e depressão em comparação com cuidadores de pessoas com outras patologias, especialmente quando os sintomas neuropsiquiátricos são proeminentes. Estratégias adequadas de enfrentamento podem modificar o impacto de situações estressantes e aumentar a qualidade de vida do cuidador. Objetivo Revisar sistematicamente as diferentes estratégias de enfrentamento utilizadas pelos cuidadores para lidar com sintomas neuropsiquiátricos. Método Foi realizada busca eletrônica em artigos publicados entre janeiro de 2005 e julho de 2017 nos bancos de dados MEDLINE (PubMed), SciELO, Web of Knowledge Cross Search (Thomson Scientific/ISI Web Services) e PsycINFO. Os termos utilizados foram coping, caregivers, strategy, onset, adaptation, family, behavior, dementia and Alzheimer. Os artigos avaliados foram categorizados em estratégias de enfrentamento focadas na resolução do problema, na emoção e estratégias disfuncionais. Resultados Foram encontrados 2.277 artigos. Após aplicação dos critérios de exclusão, foram incluídos 24 artigos. A estratégia de enfrentamento mais utilizada foi a focada na emoção. O uso desta estratégia associada a religião e espiritualidade pode reduzir sintomas de depressão e ansiedade dos cuidadores. As estratégias de enfrentamento focadas na resolução do problema utilizaram principalmente intervenções baseadas no enfrentamento ativo. A resolução de problemas reduz o impacto dos estressores psicológicos agudos sobre a atividade procoagulante. As estratégias disfuncionais estavam associadas ao aumento da sobrecarga dos cuidadores. Conclusão Os estudos mostraram que o desenvolvimento e uso de estratégias de enfrentamento pode aliviar sintomas depressivos, ansiosos e sobrecarga do cuidador. No entanto, ainda são necessários estudos longitudinais que descrevam claramente o tipo de estratégia de enfrentamento utilizada em relação aos desfechos das pesquisas.

Disease awareness may increase risk of suicide in young onset dementia: A case report.

Studies report that people with young onset Alzheimer's disease (YOAD) have higher levels of disease awareness compared to those with late onset AD. We report a case of a man with YOAD who had preserved awareness of disease, depression and risk of suicide associated with the development of the dementia. Cognitive functioning, disease severity, depressive symptoms and awareness of disease were assessed using validated measures. The person with YOAD showed a moderate level of disease severity and high degree of dependence for activities of daily living. There was recognition of memory problems and routine changes with presence of intense pessimism, low self-esteem and suicidal ideation. This case points to the existence of specific issues related to young onset dementia and the clinical importance of identifying and treating patients who might be aware of their condition.

Estudos relatam que pessoas com doença de Alzheimer (DA) de início precoce possuem maior consciência da doença comparadas com as de início tardio. Descrevemos o caso de um homem com DA de início precoce, que apresenta consciência da doença preservada, depressão e risco de suicídio associado ao desenvolvimento da demência. O funcionamento cognitivo, gravidade da doença, sintomas depressivos e a consciência da doença foram acessados através de instrumentos validados. A pessoa com DA de início precoce apresentou um nível de gravidade da doença moderado e um elevado grau de dependência para as atividades de vida diária. Houve reconhecimento dos problemas de memória e mudanças de rotina com presença de pessimismo intenso, baixa autoestima e ideação suicida. Esse caso indica a existência de questões específicas relacionadas à demência de início precoce e a importância clínica de identificar e tratar pacientes que possam estar conscientes de sua condição.

Disease awareness may increase risk of suicide in young onset dementia: A case report / Consciência da doença pode aumentar risco de suicídio na demência de início precoce: relato de caso

ABSTRACT Studies report that people with young onset Alzheimer's disease (YOAD) have higher levels of disease awareness compared to those with late onset AD. We report a case of a man with YOAD who had preserved awareness of disease, depression and risk of suicide associated with the development of the dementia. Cognitive functioning, disease severity, depressive symptoms and awareness of disease were assessed using validated measures. The person with YOAD showed a moderate level of disease severity and high degree of dependence for activities of daily living. There was recognition of memory problems and routine changes with presence of intense pessimism, low self-esteem and suicidal ideation. This case points to the existence of specific issues related to young onset dementia and the clinical importance of identifying and treating patients who might be aware of their condition.

RESUMO Estudos relatam que pessoas com doença de Alzheimer (DA) de início precoce possuem maior consciência da doença comparadas com as de início tardio. Descrevemos o caso de um homem com DA de início precoce, que apresenta consciência da doença preservada, depressão e risco de suicídio associado ao desenvolvimento da demência. O funcionamento cognitivo, gravidade da doença, sintomas depressivos e a consciência da doença foram acessados através de instrumentos validados. A pessoa com DA de início precoce apresentou um nível de gravidade da doença moderado e um elevado grau de dependência para as atividades de vida diária. Houve reconhecimento dos problemas de memória e mudanças de rotina com presença de pessimismo intenso, baixa autoestima e ideação suicida. Esse caso indica a existência de questões específicas relacionadas à demência de início precoce e a importância clínica de identificar e tratar pacientes que possam estar conscientes de sua condição.