Scope of occupational therapy practice for adults with both Down syndrome and dementia: A cross-sectional survey

Introduction 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. Methods 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. Results 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. Conclusion 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.