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.

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.

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.

Dementia and Mental Health During the COVID-19 Pandemic: A Systematic Review.

Objectives: The COVID-19 pandemic raised significant concerns related to the management of care for people with dementia, but few studies have examined the mental health of older adults with dementia and their caregivers during the pandemic, when compared to other populations. This systematic review thus aims to compare and discuss the impact of the COVID-19 pandemic on people with dementia and on their caregivers' mental health. Methods: A search was performed in the PubMed/Medline and ISI databases according to the PRISMA methodology. We included studies published in 2020 and 2021 with the following combinations of keywords: "COVID-19 and mental health and elderly," "COVID-19 and mental health and dementia;" "COVID-19 and dementia and caregivers," "pandemic and mental health and elderly," and "pandemic and anxiety." Results: Twenty-two studies were included. Technology has proven to be an essential ally during the pandemic, since all 22 studies performed remote data collection. Nearly all the studies emphasized that social isolation and withdrawal can lead to the emergence or increase of neuropsychiatric symptoms and motor difficulties. However, the findings were mixed concerning the pandemic's impact on the cognition of people with dementia. Caregivers also suffered from the pandemic's impact, experiencing an increase in the burden of care and symptoms of stress, depression, and anxiety. Few studies suggested measures to alleviate the difficulties of people with dementia and their caregivers. There are reports of the benefits of technology in communication and treatment through teleconsultations, however, not everyone has access to such technology, making it difficult to disseminate this tool to the target population. Conclusions: The studies generally showed that social isolation can increase motor deficits and neuropsychiatric symptoms and caregivers' burden and anxiety. New avenues for care and intervention are thus needed for older adults with cognitive deficits and their caregivers to avoid the intensification of physical and psychological suffering. Technological initiatives and support should consider people with cognitive impairment and different levels of technology literacy. Systematic Review Registration: https://www.crd.york.ac.uk/prospero/.

Patterns of impairment in decision-making capacity in Alzheimer's disease and its relationship with cognitive and clinical variables

Objectives: To investigate the patterns of impairment in decision-making abilities and their relationship with cognitive and clinical symptoms in people with Alzheimer's disease. We hypothesized that decision-making abilities would not be impaired at the same level and would be related to impairment of global cognition and other clinical symptoms of the disease. Methods: Using a cross-sectional design, we included a consecutive sample of 102 people with Alzheimer's disease and their respective caregivers. We investigated the relationship between decision-making capacity and quality of life (QoL), disease awareness, mood, functionality, neuropsychiatric symptoms, and cognition. Results: Different levels of impairment were observed in the participants' decision-making abilities. Understanding, appreciation, and reasoning were correlated, but expressing a choice was only correlated with appreciation. Deficits in understanding were related to impaired disease awareness, lower self-reported QoL, and lower comprehension of spoken language. Better appreciation was related to better orientation and lower age. Better reasoning was related to better orientation and better self-reported QoL. Deficits in expressing a choice were related to lower self-reported QoL. Conclusion: The pattern of impairment in decision-making abilities was not linear. Each decision-making ability was related to different cognitive and clinical deficits. Therefore, cognitive functioning is an insufficient criterion for judging an individual's decision-making ability.

Patterns of impairment in decision-making capacity in Alzheimer's disease and its relationship with cognitive and clinical variables.

OBJECTIVES: To investigate the patterns of impairment in decision-making abilities and their relationship with cognitive and clinical symptoms in people with Alzheimer's disease. We hypothesized that decision-making abilities would not be impaired at the same level and would be related to impairment of global cognition and other clinical symptoms of the disease. METHODS: Using a cross-sectional design, we included a consecutive sample of 102 people with Alzheimer's disease and their respective caregivers. We investigated the relationship between decision-making capacity and quality of life (QoL), disease awareness, mood, functionality, neuropsychiatric symptoms, and cognition. RESULTS: Different levels of impairment were observed in the participants' decision-making abilities. Understanding, appreciation, and reasoning were correlated, but expressing a choice was only correlated with appreciation. Deficits in understanding were related to impaired disease awareness, lower self-reported QoL, and lower comprehension of spoken language. Better appreciation was related to better orientation and lower age. Better reasoning was related to better orientation and better self-reported QoL. Deficits in expressing a choice were related to lower self-reported QoL. CONCLUSION: The pattern of impairment in decision-making abilities was not linear. Each decision-making ability was related to different cognitive and clinical deficits. Therefore, cognitive functioning is an insufficient criterion for judging an individual's decision-making ability.

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.

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.

Awareness of disease in Alzheimer's disease: what do patients realize about their own condition?

Objective: We aim to assess different objects of awareness of disease of people with Alzheimer's disease (AD) in mild and moderate stages Method: Semi-structured interviews were conducted with 34 participants with AD and qualitative analyses were used to analyze the participants' reports. Results: Cognitive impairment was the most peserved area of awareness. The participants' explanations were mainly categorized as biological/genetic and psychosocial causes. Also, awareness of social/emotional functioning and interpersonal relationships were generally well-preserved in this group. Among those who noticed some alterations in social life, there were reports of the feeling of being exposed and how some cognitive symptoms interfere with their functioning. In the emotional state domains, most of the participants reported more sadness than before the onset of dementia. Although most participants noticed a change in routine and the impact on daily life, many did not notice the need of help for general tasks. Conclusion: Our results underpin that most people with AD were able to provide their own subjective report of their experience of living with a disease. Participants' self-reports demonstrated the differences across domains, and this information may contribute to a better understanding of awareness of disease in AD.

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.

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.

Caregivers' resilience is independent from the clinical symptoms of dementia.

Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

Caregivers' resilience is independent from the clinical symptoms of dementia / A resiliência dos cuidadores independe dos sintomas clínicos da demência

ABSTRACT Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers’ resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver’s gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver’s quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers’ resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

RESUMO Resiliência é a capacidade de adaptação bem-sucedida, quando confrontado com o estresse da adversidade. Nosso objetivo foi investigar a relação entre a resiliência dos cuidadores e fatores sociodemográficos e clínicos de pessoas com demência. A avaliação transversal de 58 pessoas com demência e suas duplas de cuidadores, mostrou que a maioria dos cuidadores eram do sexo feminino e filhas adultas. Os cuidadores relataram níveis moderados a altos de resiliência, níveis mais baixos de ansiedade e sintomas depressivos e níveis moderados de sobrecarga. Resiliência não estava relacionada ao gênero (p = 0.883) e problemas clínicos (p = 0.807) e emocionais (p = 0.420) dos cuidadores. A regressão mostrou que a resiliência foi relacionada à qualidade de vida (p < 0,01) dos cuidadores e inversamente associada com os sintomas depressivos (p < 0,01). Não havia uma relação significativa entre a resiliência dos cuidadores e as características sociodemográficos e clínicas das pessoas com demência. Podemos supor que a resiliência é uma característica individual. Os grupos de apoio devem enfatizar os fatores que podem aumentar a resiliência entre os cuidadores.

Quality of life in young onset dementia: an updated systematic review.

INTRODUCTION: Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. METHOD: This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. RESULTS: People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. CONCLUSION: Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

Quality of life in young onset dementia: an updated systematic review / Qualidade de vida na demência de início precoce: uma revisão sistemática atualizada

Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

Introdução A demência de início precoce se desenvolve antes dos 65 anos e possui consequências adversas específicas relacionadas à idade para a qualidade de vida (QV). Nós examinamos de forma sistemática fatores ligados à QV de pessoas com demência de início precoce e seus cuidadores. Método Foi utilizada a metodologia PRISMA, com busca nas bases de dados Cochrane, PubMed, SciELO, PsycINFO, Scopus e Thomson Reuters Web of Science electronic em 5 de julho de 2015. Foi utilizada a palavra-chave início precoce combinada com demência, Alzheimer, demência vascular, demência mista, demência frontotemporal, qualidade de vida, bem-estar e necessidades não atendidas. Nove estudos foram incluídos. Foram revisados os objetivos, desenho, amostra, instrumentos e resultados relacionados à QV. Resultados Pessoas com demência de início precoce pontuaram sua própria QV significantemente mais alta que seus cuidadores. A maior consciência da doença entre essas pessoas é associada com melhor QV dos cuidadores. Foi encontrada relação entre necessidades não atendidas e atividades diárias, falta de companhia e dificuldades com a memória. A demora na definição do diagnóstico, os serviços de saúde disponíveis e a falta de perspectivas futuras do cuidador foram fatores associados às necessidades não atendidas. Conclusão Deve-se considerar a possibilidade de conduzir investigações com amostras mais homogêneas e um conceito mais claro de QV. O presente estudo chama atenção para a necessidade de pesquisas em mais países, utilizando instrumentos específicos para pessoas com demência de início precoce. Seria interessante se estudos pudessem traçar paralelos com grupos de início tardio.