为阿尔茨海默病照护者构建心理与技术需求分类体系
A Taxonomy of Mental Health and Technology Needs for Alzheimer's and Dementia Caregivers

- 基于跨学科研究与访谈,建立照护者需求与技术干预的对应关系
- 发现现有技术忽视情感耗竭、关系紧张等关键需求
- 提供可共享的术语框架,助力临床与科技协同创新
全球范围内,家庭成员是阿尔茨海默病及相关痴呆症(AD/ADRD)长期照护的核心力量。2023年,超过1100万美国亲友贡献了180亿小时无偿照护,常以自身身心健康为代价。这些非正式照护者常被称为“隐形的第二患者”,面临更高的心理健康问题风险。然而,现有研究常将复杂的心理社会体验简化为单一的“照护负担”概念,掩盖了具体未满足或有效支持的需求。与此同时,数字与人工智能技术迅速发展,涵盖智能手机应用、视频会议、传感平台及AI聊天机器人。但医学、心理学与技术研究之间缺乏共享框架,限制了进展积累。本研究提出“照护者心理健康与技术分类体系”,系统关联AD/ADRD照护者需求与技术干预类别。基于跨学科文献综述及两项照护者定性研究,该分类体系揭示照护者优先事项与现有技术支持之间的错配,凸显关系紧张、共情耗竭等被忽视领域,并提出自适应、响应式系统的设计方向。该框架为临床医生、研究者与技术设计者提供共同语言,推动更以人为中心、具临床依据的痴呆照护创新。
原文摘要 · Abstract (English)
Family members caring for individuals with Alzheimer's disease and related dementias (AD/ADRD) provide the foundation of long-term care worldwide. In 2023, more than 11 million U.S. family and friends contributed 18 billion hours of unpaid care, often at the cost of their own physical and mental health. These informal caregivers -- also referred as the "invisible second patients" -- experience elevated rates of mental health problems. Yet research commonly reduces their complex psychosocial experiences to a single construct of caregiver burden, obscuring which specific needs are unmet or effectively supported. At the same time, digital and AI-enabled technologies are rapidly expanding, from smartphone apps and videoconferencing to sensor platforms and AI chatbots. However, the absence of shared frameworks across medicine, psychology, and technology research limits cumulative progress. This study introduces a Caregiver Mental Health and Technology Taxonomy that systematically links AD/ADRD caregiver needs with corresponding classes of technology-based interventions. Drawing from an interdisciplinary literature review and two qualitative studies with caregivers, the taxonomy identifies mismatches between caregiver priorities and existing technological support, highlights under-served domains such as relational strain and compassion fatigue, and proposes design directions for adaptive, responsive systems. The framework offers a shared vocabulary to guide clinicians, researchers, and technology designers in developing more person-centered and clinically grounded innovation in dementia care.
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