Optimising functional independence of older persons with dementia: Evaluation of the Interdisciplinary Home-bAsed Reablement Program (I-HARP)

INTERVENTION: I‐HARP is an adaptation and expansion of a US reablement program, which addresses common challenges that frail older people commonly experience, including environmental risks for disability, functional decline and multimorbidities. I‐HARP is underpinned by person‐environment fit theory, disablement processes, and lifespan theory of control and resilience. Practice approaches use individualised, client‐directed goal setting and care planning guided by the principles of motivational interviewing and interdisciplinary team work. Further, tailored to the unique needs of people with dementia, I‐HARP incorporates the principles of cognitive rehabilitation, comprehensive cognitive and functional assessment, person‐centred dementia care, shared decision making, partnership with the carer, and carer support. The I‐HARP consists of the following components and will be delivered over a 4 month period: 1) Up to 12 home visits of 1.5 hours (5‐6 x Occupational Therapy (OT), 3‐4 x Registered Nurse (RN), plus 2‐4 additional options of allied‐health support), tailored to the individual client’s needs. RN Visit 1: Introduction, comprehensive RN clinical assessment with a particular focus on medication regimen, pain, incontinence, depression, sleep and other chronic disease management RN Visit 2: brainstorming strategies, setting goals using the Bangor Goal Setting Interview (BGSI), action plans incorporating cognitive rehabilitation strategies, exercise regimen, medication management RN Visit 3: reviewing the goals and strategies, communicating with healthcare providers where necessary, supporting the implementation of action plans, monitoring goals and strategies RN Visit 4: Review of goals and action plans, and working out planning for the future to promote continued independence OT Visits 1 and 2: Introduction, comprehensive OT assessment with a particular focus on cognitive and functional abilities, home safety and risk assessment, home modification/assistive devices work order. OT Visits 3 to 5: brainstorming strategies, goal setting using the BGSI, action plans incorporating cognitive rehabilitation strategies, implementation of strategies, monitoring goals, adapting strategies to maximise independence, strength and balance exercises (may be shared with RN). OT Visit 5 or 6: Review goals and action plans, identify successful strategies that improved performance and develop action plan to promote ongoing independence, review strength and balance exercises. 2) Minor home modification/home repairs and/or provision of assistive devices (up to value $1000), to improve home safety. 3) Three individual carer support sessions of 1.5 hours at the beginning, middle and end of home visits by a Case Coordinator (CC). The support session begins with a brief education of dementia and its impact, principles of reablement and person‐centred care, and the goal of I‐HARP, as well as discussing the carer’s role, needs and concerns (e.g. using activities in daily care, self‐care, communication, enabling the person, and any issues arising from I‐HARP). The 2nd and 3rd sessions cover the progress of I‐HARP and any issues, challenges and concerns relevant to the implementation of I‐HARP and carer needs. The 3rd session concludes with planning for future to ensure continuity of I‐HARP. The treatment fidelity plan includes the following: The site personnel (I‐HARP interventionists) delegated to deliver the intervention will be selected carefully to CONDITION: Dementia PRIMARY OUTCOME: Mean functional independence score (measured using Disability Assessment for Dementia ‐DAD) ; Mean depressive symptoms score (measured by Collateral Source version Geriatric Depression Scale‐15 item, CS‐GDS‐15) ; Mean health related quality of life score (measured by 5‐Level version of the EuroQol five dimensions, EQ‐5D‐5L). The program will be tailored to suit each participant's needs, which will be determined following comprehensive assessments by the I‐HARP interventionists (OT, RN and CC). Following the initial assessments, an interdisciplinary action plan with set goals and strategies will be formulated. To ensure interdisciplinary team work a case conference and ongoing communications will be maintained among the interventionists at each site. The total number of home visits is set (a minimum of 10 and a maximum of 12). A minimum of 3 and a maximum of 4 visits by RN and a minimum of 5 and a maximum of 6 visits by OT. Following 1 carer support, 1 RN and 2 OT visits, an interdisciplinary case conference will be held among the I‐HARP interventionists, during which a comprehensive care plan for each person with dementia will be discussed. The need for other allied health services (who will refer to, which allied health service and when) will be discussed during this case conference. The total number of home visits by each I‐HARP clinician will be determined during this session, based on the tailored care plan for that particular person. However, the number of visits may change later stage if needed after the team discussion. Participants (person with dementia and his/her carer) will be recruited across 3 public hospitals and 2 aged care services. The interventionists are the staff of the participating organisations, who have been trained to deliver respective components of I‐HARP. SECONDARY OUTCOME: Costs of the delivery of the intervention (I‐HARP) and all contributing costs (i.e. training of interventionists, care coordination, travel, supervision, minor home modifications/assistive devices), monitored and recorded by I‐HARP project team. ; Costs to the participants including healthcare/aged care/community services used by the participants, medication costs and any other costs associated with falls and minor/injuries to the client with dementia, and carer workforce participation. The information will be recorded by the carer on an ongoing basis using the ‘carer diary’ provided to the carer. This information will be collected monthly via a phone call to the carer. Events of aged care service use Events of primary care (GP) visit Events of residential aged care home admission Incidents of falls and other minor injuries Incidents of unplanned hospital admission Mean carer burden score (measured by Zarit Burden Inventory, ZBI) ; ; This outcome will be measured in both the carer and the client with dementia ; Mean home environment safety score (measured by The Home Safety Self‐Assessment Tool, HSSAT) Mean hours of carer paid workforce participation Mean mobility score (measured by Short Physical Performance Battery, SPPB) Mean quality of life score (measured by Quality of life in Alzheimer's disease, QOL‐AD) Other system costs that occur to the healthcare system (secondary outcomes #9‐13 multiplied by unit costs derived in the literature) INCLUSION CRITERIA: Participants should meet the following criteria to be eligible to be included in the study: • Should be 60 years or over • Have mild to moderate dementia as rated by the Global Deterioration Rating Scale for Assessment of Primary Degenerative Dementia (GDRS), Stage 4‐5 (mild‐moderate) • Have conversational English language ability • Have a cognitively able carer who has at least four days or seven hours per week contact • Provides consent for participation in study(both participant with dementia and carer must consent) • Agrees to be randomised There is no other specific criteria for carer (see Point 4).