School of Health Sciences, University of South Australia, Adelaide, SA, Australia.
Occupational Therapy, School of Medical and Health Sciences, Edith Cowan University, Joondalup, WA, Australia.
Aust Occup Ther J. 2020 Jun;67(3):218-228. doi: 10.1111/1440-1630.12645. Epub 2020 Jan 27.
Dementia in adults with Down syndrome causes a progressive decline in daily occupations impacting both persons with Down syndrome and their informal caregivers. This study aimed to explore the scope of occupational therapy practice for adults with both Down syndrome and dementia and their informal caregivers living in their homes.
A survey was conducted with occupational therapists having clinical experience in providing interventions for adults with Down syndrome. A web-based survey was developed to explore occupational therapy practice for this group of people with Down syndrome and their informal caregivers. Responses to closed-ended questions were analysed descriptively, and inductive content analysis was used for open-ended questions.
Forty-three occupational therapists from Australia, Canada, United Kingdom and the United States of America participated in the survey. Two-thirds were from the United Kingdom, most of whom were employed in the public sector and had at least 10 years of clinical experience. Over 90% of respondents received one or more referrals in a typical month for adults with Down syndrome having dementia, 68% of which were for a decline in activities of daily living. Home environment and activities of daily living were frequently assessed areas, and the commonest interventions were compensatory strategies and environmental modifications. Only half the respondents provided interventions for informal caregivers. Risk and safety and manual handling were frequently addressed domains for informal caregivers. Collaboration and developing clinical expertise were the two key perceived enablers for providing effective occupational therapy services. Fragmentation of services and a lack of client-centred care were the common perceived barriers.
Occupational therapists often address decline in activities of daily living for individuals with both Down syndrome and dementia. To support participation in meaningful occupations for these people and support the needs of their informal caregivers, it is essential that services are offered in a collaborative approach.
唐氏综合征患者的成年痴呆症会导致日常活动逐渐衰退，影响唐氏综合征患者及其非专业照护者。本研究旨在探索针对居家生活的唐氏综合征成年痴呆症患者及其非专业照护者的职业治疗实践范围。
对具有为唐氏综合征成人提供干预措施临床经验的职业治疗师进行了一项调查。开发了一个基于网络的调查，以探索这一群体唐氏综合征患者及其非专业照护者的职业治疗实践。对封闭式问题的回答进行了描述性分析，并对开放式问题进行了归纳内容分析。
来自澳大利亚、加拿大、英国和美国的 43 名职业治疗师参加了这项调查。其中三分之二来自英国，他们大多受雇于公共部门，且拥有至少 10 年的临床经验。超过 90%的受访者在典型月份会收到一个或多个唐氏综合征成年痴呆症患者的转介，其中 68%是由于日常生活活动能力下降。家庭环境和日常生活活动是经常评估的领域，常见的干预措施是补偿策略和环境调整。只有一半的受访者为非专业照护者提供干预措施。风险和安全以及手动处理是非专业照护者经常涉及的领域。协作和发展临床专业知识是提供有效职业治疗服务的两个关键促进因素。服务的碎片化和缺乏以客户为中心的护理是常见的感知障碍。
职业治疗师经常针对唐氏综合征患者和痴呆症患者的日常生活活动能力下降进行干预。为了支持这些人参与有意义的职业活动并满足其非专业照护者的需求，必须以协作的方式提供服务。
