Home-based occupational therapy for adults with both Down syndrome and dementia and their caregivers

Occupational therapy intervention process guided by a client-centred approach (Law, Baptiste, & Mills, 1995) will entail valuing occupational needs and goals important for the participants (Sumsion, 1993). The occupational therapy intervention process will encompass seven stages adapted from the Occupational Performance Process Model (Fearing, Law, & Clark, 1997). Each stage will be tailored to meet the needs of the participants. Baseline phase: In the baseline phase, the first five stages of the Occupational Performance Process Model will be incorporated, which includes: (1) Building rapport and identifying occupational goals with the participant with both Down syndrome and dementia and his/her informal caregiver(s). For this study, the ‘informal caregiver’ is an individual who provides care and support to their family member with dementia without receiving fee for his/her caregiving role (Farina et al., 2017). (2) Choosing appropriate theoretical models and frames of reference to address specific occupational needs of the participants [e.g. Person-Environment-Occupational model (Law, 1996) and/or compensatory approach from the rehabilitation frame of reference (Seidel, 2003)and/or strength-based approach (Dunn et al., 2013)]. (3) Performing appropriate client-centred assessments to address the occupational needs of the participants. The client-centred assessment tools include: the American Occupational Therapy Association Occupational profile tool to understand the participant’s occupational performance history (American Association of Occupational Therapists, 2017), and the Canadian Occupational Performance Measure to identify and prioritise meaningful occupational goals (Law et al., 1990). (4) From the gathered information, identifying strengths and available resources to address occupational goals of the participants. (5) Negotiating achievable goals with the participants. The agreed occupational goals and time frame will be communicated both verbally and in written format to the participants. Intervention (B) phase: During the intervention phase, stage 6 of the Occupational Performance Process Model will be applied, which involves implementation of intervention/s tailored to meet the occupational goals of the participants. For the participant with both Down syndrome and dementia, the interventions strategies will be broadly categorised into: education and training on task simplifications, task adaptations or use of equipment, and home modifications. For the informal caregiver(s), the intervention strategies will be broadly grouped into: communication and coping strategies, safe handling of the participant with both Down syndrome and dementia, use of equipment (and/or home modifications) to assist the participant with both Down syndrome and dementia, task simplification and adaptation, and providing information about available relevant external support networks. Follow-up phase: In the final stage (7) of the Occupational Performance Process Model, the identified goals of the participants will be re-evaluated, which will be as follows: The DAD and the ZBI outcome measures will be completed via phone interviews on weekly basis. On the last session, independent assessor will also complete the COPM to evaluate if the goal has been accomplished. Intervention delivered by: A qualified occupational therapist having a minimum of two years of clinical experience in neurological rehabilitation. Independent assessor (a qualified therapist) will perform continuous assessments using outcome measures during baseline, intervention and follow-up phases. Strategies to monitor adherence to occupational therapy intervention program: Two possible strategies will be explored with the informal caregivers: (1) requesting informal caregiver(s) to document information in a diary, and/or (2) obtain verbal report from the informal caregiver(s) prior to start of each intervention session about the issues encountered whilst rehearsing home-program with participants' with both Down syndrome and dementia. Mode of delivery: Face-to-face in the home environments and phone calls. Number of times Baseline phase: Minimum of three sessions (Weekly) Intervention phase: Maximum of six sessions (Weekly). Follow-up phase: Between 3 to 4 phone calls (Weekly). References: American Association of Occupational Therapists. (2017). AOTA Occupational Profile Template. American Journal of Occupational Therapy, 71(Supplement_2), 1. doi:10.5014/ajot.2017.716S12 Dunn, W.,Koenig, K.,Cox, J.,Sabata, D.,Pope, E.,Foster, L., & Blackwell, A. (2013). Harnessing strengths: daring to celebrate EVERYONE'S unique contributions, Part I. Developmental Disabilities Special Interest Section Quarterly, 36(1), 1-3. https://nyu-staging.pure.elsevier.com/en/publications/harnessing-strengths-daring-to-celebrate-everyones-unique-contrib-2 Farina, N.,Page, T. E.,Daley, S.,Brown, A.,Bowling, A.,Basset, T., . . . Banerjee, S. (2017). Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimer's & Dementia, 13(5), 572-581. doi:https://doi.org/10.1016/j.jalz.2016.12.010 Fearing, V.,Law, M., & Clark, J. (1997). An occupational performance process model: fostering client and therapist alliances. Canadian Journal of Occupational Therapy, 64(1), 7-15. doi:https://doi.org/10.1177/000841749706400103 Law, M. (1996). The person-environment occupation model: a transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63(1), 9-23. https://search.library.unisa.edu.au/record/UNISA_ALMA11161108200001831 doi:https://doi.org/10.1177/000841749606300103 Law, M.,Baptiste, S.,McColl, M.,Opzoomer, A.,Polatajko, H., & Pollock, N. (1990). The Canadian occupational performance measure: an outcome measure for occupational therapy. Canadian Journal of Occupational Therapy, 57(2), 82-87. doi:https://doi.org/10.1177/000841749005700207 Law, M.,Baptiste, S., & Mills, J. (1995). Client-centred practice: What does it mean and does it make a difference? Canadian Journal of Occupational Therapy, 62(5), 250-257. doi:https://doi.org/10.1177/000841749506200504 Seidel, A. (2003). Rehabilitation frame of reference. In Elizabeth B Crepeau, Ellen S Cohen, & Barbara A Boyt Schell (Eds.), Willard & Spackman's Occupational Therapy (pp. 238-240). Philadelphia: Lippincott Williams & Wilkins. Sumsion, T. (1993). Client-centred practice: the true impact. Canadian Journal of Occupational Therapy, 60(1), 6-8. doi:https://doi.org/10.1177/000841749306000103