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1.
Alzheimer Dis Assoc Disord ; 33(2): 129-135, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30870144

RESUMO

INTRODUCTION: Awareness of disease is the ability to acknowledge changes caused by deficits related to the disease process. We aimed to investigate whether there are differences in awareness of disease between young-onset dementia (YOD) and late-onset dementia (LOD) and examined how awareness interacts with cognitive and clinical variables. MATERIALS AND METHODS: Using a cross-sectional design, 49 people with YOD and 83 with LOD and their caregivers were included. We assessed awareness of disease, cognition, functionality, stage of dementia, mood, neuropsychiatric symptoms, and caregivers' quality of life (QoL) and burden. RESULTS: We found that people with YOD were more aware of the disease than people with LOD (P<0.005). Multivariate linear regression revealed that higher impairment in functional level was associated with unawareness in both groups (YOD=P<0.001; LOD=P<0.001). In the YOD group, preserved awareness was related to worse self-reported QoL (P<0.05), whereas, in LOD, deficits in awareness were related to caregivers' worst perceptions about people with dementia QoL (P<0.001). CONCLUSIONS: The findings highlight the distinct nature of awareness between YOD and LOD. The YOD group had higher levels of disease awareness compared with the LOD group, even though the first group had a greater impairment in functionality.

2.
J Geriatr Psychiatry Neurol ; : 891988718824039, 2019 Jan 16.
Artigo em Inglês | MEDLINE | ID: mdl-30651027

RESUMO

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.

3.
Aging Ment Health ; : 1-9, 2018 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-30499333

RESUMO

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.

4.
Trends Psychiatry Psychother ; 40(3): 258-268, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30304119

RESUMO

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.


Assuntos
Adaptação Psicológica , Doença de Alzheimer , Cuidadores/psicologia , Doença de Alzheimer/terapia , Humanos
5.
Trends psychiatry psychother. (Impr.) ; 40(3): 258-268, July-Sept. 2018. tab, graf
Artigo em Inglês | LILACS-Express | ID: biblio-963102

RESUMO

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.

6.
J Geriatr Psychiatry Neurol ; 31(2): 76-83, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29658428

RESUMO

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.


Assuntos
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 , Autorrelato
7.
Dement Neuropsychol ; 11(3): 308-311, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29213530

RESUMO

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.

8.
Dement. neuropsychol ; 11(3): 308-311, July-Sept. 2017. tab
Artigo em Inglês | LILACS | ID: biblio-891023

RESUMO

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.


Assuntos
Humanos , Suicídio , Demência , Diagnóstico Precoce , Depressão , Doença de Alzheimer
9.
Arq Neuropsiquiatr ; 74(12): 967-973, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27991993

RESUMO

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.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Resiliência Psicológica , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Estudos Transversais , Demência/psicologia , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Qualidade de Vida , Análise de Regressão , Fatores Socioeconômicos
10.
Arq. neuropsiquiatr ; 74(12): 967-973, Dec. 2016. tab
Artigo em Inglês | LILACS-Express | ID: biblio-828006

RESUMO

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.

11.
Trends Psychiatry Psychother ; 38(1): 6-13, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27074338

RESUMO

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.


Assuntos
Demência/psicologia , Qualidade de Vida , Idade de Início , Humanos
12.
Trends psychiatry psychother. (Impr.) ; 38(1): 6-13, Jan.-Mar. 2016. tab, graf
Artigo em Inglês | LILACS-Express | ID: lil-779105

RESUMO

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.

13.
Trends Psychiatry Psychother ; 37(4): 213-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26689390

RESUMO

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.


Assuntos
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 Social
14.
Trends psychiatry psychother. (Impr.) ; 37(4): 213-219, Oct.-Dec. 2015. tab
Artigo em Inglês | LILACS-Express | ID: lil-770447

RESUMO

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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