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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. usc Refereed/Peer-reviewed

Refereed/Peer-reviewed This paper describes the development of a home-based occupational therapy intervention program for people with Down syndrome who experience early on-set dementia causing a decline in their performance skills and increasing care dependency on their informal caregivers. A six-step methodological process adapted from the Medical Research Council framework for developing and evaluating complex interventions was formulated to develop an evidence-based occupational therapy program for people with both Down syndrome and dementia and their informal caregivers. The first two steps gathered evidence through systematic reviews of the literature and determined the scope of current occupational therapy practice. The gathered evidence was synthesised in step three to develop a client-centred occupational therapy intervention program for persons with both Down syndrome and dementia and their informal caregivers. In steps four and five, opinions were sought from occupational therapists working in this area of practice on the content of the developed program and its feasibility within the Australian disability services context. The final testing step can be conducted in the future using a single-case experimental design study. It is important to use rigorous frameworks and gather comprehensive evidence using multiple methods to develop interventions for small heterogeneous populations. The developed occupational therapy program for persons with both Down syndrome and dementia and their informal caregivers appears feasible to be implemented within the Australian disability services; however, funding limitations imposes barriers for its implementation in clinical practice.

Importance: People with dementia require tailored interventions to support participation and performance in their desired occupations, and informal caregivers need interventions that reduce caregiving burden to enable them to continue with their roles. Objective: This systematic review investigated whether home-based occupational therapy interventions for adults with dementia and their informal caregivers optimized care recipients’ performance of daily occupations and reduced caregiving burden and improved caregivers’ sense of competence. Data Sources: Eight databases were searched from 1946 to November 2019 using MeSH terms, keywords, and subject headings as appropriate for each database. Inclusion criteria were quantitative studies investigating the effects of home-based therapy provided by a qualified occupational therapist for adults with dementia and their informal caregivers. Study Selection and Data Collection: Study selection, data collection, and methodological quality assessments using the Critical Appraisal Skills Programme criteria tool were performed independently by two reviewers. Data analysis involved a two-stage process. Findings: From 1,229 articles identified through searches, 970 titles and abstracts were screened for eligibility after removal of duplicates. Twenty studies reported in 22 articles were included. Moderate evidence supported interventions provided jointly for adults with dementia and their informal caregivers using a combination of intervention strategies. Included studies demonstrated high risk of bias, particularly in blinding of outcome assessments. Conclusions and Relevance: Combining individualized interventions framed in client-centeredness can enhance occupational performance for adults with dementia, reduce caregiving burden, and improve informal caregivers’ sense of competence. Further research on leisure and home management occupations is warranted. What This Article Adds: The findings provide evidence supporting the effectiveness of home-based occupational therapy for people with dementia and their informal caregivers for consideration by funders of services.

Thesis (PhD(Occupational Therapy))--University of South Australia, 2021. Includes bibliographical references. Adults with Down syndrome have an increased predisposition to develop early-onset dementia before 65 years of age because of chromosomal 21 anomaly. The onset of dementia is associated with progressive loss of occupational performance skills. Because many individuals with Down syndrome continue to reside with their informal caregivers, this can lead to caregiving strain. Home-based occupational therapy can potentially optimise occupational performance of daily occupations by people with both Down syndrome and dementia, thereby enabling them to remain longer in their homes. No previous research has explored this type of intervention for these individuals and their informal caregivers. The aim of this thesis was to explore the effectiveness of home-based occupational therapy to optimise the level of occupational performance for adults with both Down syndrome and dementia to reduce caregiving strain for their informal caregivers.