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.

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.

Caregivers' Perspectives of Quality of Life of People With Young- and Late-Onset Alzheimer Disease.

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.

Psychosocial impact of early onset dementia among caregivers.

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.

Psychosocial impact of early onset dementia among caregivers / Impacto psicossocial da demência de início precoce em cuidadores

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.