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.

引言：早发性痴呆（Early Onset Dementia, EOD）作为一项重大临床与社会问题，其对痴呆患者（People With Dementia, PWD）及其照料者的身心健康造成显著影响，这一认知正日益加深。研究目的：分析早发性痴呆对家庭照料者的社会心理影响。方法：本研究采用质性研究设计。研究人员在阿尔茨海默病诊疗服务点招募了9名早发性痴呆患者的家庭照料者（其中7名为女性），通过半结构化访谈开展评估，并采用解释现象学分析法对照料者的访谈报告进行分析。结果：访谈文本中共提炼出5个核心主题：心理与情感影响、躯体影响、经济与职业影响、社会影响以及对支持服务的需求。绝大多数早发性痴呆患者的照料者认为自身情绪健康状况不佳或极差。照料者自述躯体健康状况较差，且该问题往往比心理健康问题持续更久。有2名照料者在患者确诊痴呆后不得不提前退休，另有7名照料者因需照料痴呆患者而缩减了工作时长。保留痴呆患者的残存功能，对维持其自尊、尊严与自我价值感至关重要。对于照料者而言，干预措施与益智活动可帮助痴呆患者重拾生活意义，同时助力改善其生活质量。结论：早发性痴呆患者的照料者往往过早承担起照料职责，且需在照料工作与其他个人责任之间寻求平衡。未来需开展更多针对早发性痴呆的研究，以深化对该疾病影响的认知，并为痴呆患者及其照料者开发适配的支持服务。