None listed
Conditions
Brief summary
Informal carers are the cornerstone of helping people with dementia remain at home for as long as possible. However, they have received less education preparation and limited support than professional carers to manage dementia. Caregiver stress and distress are widely reported and contribute to poor health and wellbeing of both carers and care recipients. We propose an innovative patient-centred approach, ‘Partnership in iSupport program’, in hospitals and community aged care settings to enhance support for carers. The intervention comprises support from an iSupport program facilitator, an online or hardcopy psychoeducation program for carers using Australian iSupport for Dementia and carer support groups. We will conduct a trial to determine the effectiveness (aim 1) and cost-effectiveness (aim 2) of the intervention. Carers in the intervention group will participate in the ‘Partnership in iSupport program’ for 12 months. The ‘Partnership in iSupport program’ includes (1) a program facilitator who acts as a link worker to assist informal carers to navigate, access and utilise dementia care services; (2) psychoeducation for informal carers to improve their dementia care capabilities; and (3) carer support groups to strengthen social support for informal carers. We will measure quality of life and health outcomes for carers and care recipients, the use of health and aged care services and the incremental cost per quality adjusted life years gained by the intervention compared to usual care. This study is important because the intervention will improve health and quality of life for both carers and care recipients, reduce preventable hospitalisations of people with dementia and improve dementia care services through reciprocal partnerships between carers and dementia care service providers.
Interventions
The planned interventions are described in the following.
(1) Managing transitions: In each study site, carers will be assigned to an iSupport program facilitator and encouraged to request individualised support from the facilitator during transition between care settings (i.e. from hospital to home transitional care) and types (i.e. receiving ambulatory geriatric services, or rehabilitation or palliative care at home in addition to usual home care package) of the persons living with dementia (
The planned interventions are described in the following. (1) Managing transitions: In each study site, carers will be assigned to an iSupport program facilitator and encouraged to request individualised support from the facilitator during transition between care settings (i.e. from hospital to home transitional care) and types (i.e. receiving ambulatory geriatric services, or rehabilitation or palliative care at home in addition to usual home care package) of the persons living with dementia (PLWD). Carers will make the request by phone or email. The individualised support for carers will be administered using phone or Zoom (an online meeting platform), which will be organised by the facilitator. The anticipated time spend on this type of support will be 1-2 hours per week per carer or based on the carer’ needs and discretion. The time the facilitator spends on supporting each individual carer will be record as part of data for analysis. (2) Managing dementia progression: Carers are also encouraged to contact the facilitator to discuss changes in PLWD (i.e., signs of deterioration, changed behaviours and complications) and gain advice to access relevant multidisciplinary care services for timely treatment and care. The facilitator will follow the carers until their needs for support have been met. The individualised support for carers will be administered using phone or Zoom. The anticipated time spend on this type of support will be 1-2 hours per week per carer or based on the carer’ needs and discretion. The time the facilitator spends on supporting each individual carer will be record as part of data for analysis. (3) Psychoeducation: Carers will select at least 20 out of 30 learning units that are relevant to them from the online iSupport program or a hardcopy iSupport manual to learn over the first 6 months of the trial and revisit or learn new units when they feel it is needed in the second 6 months. The learning unites include short readings, case studies and interactive activities using multiple choice questions and answers. The expected time spent on learning the online iSupport learning modules is no more than 12 hours in total. The completion of each unit will be measured through the program design and will be recorded as data for compliance with the intervention. Carers will receive a certificate for each unit they complete, a strategy to motivate them in the program. (4) Carer support group: In each study site, the facilitator will assign the 23 carers into one of two support groups. The facilitator will conduct a monthly online carer support group meeting using the Zoom meeting platform and lasting no more than 30 minutes. Managing transitions between care settings and types and managing disease progression will be standard meeting agenda so that carers can share their experiences and support each other in these dementia caregiving areas. The meetings will be recorded for carers in the same group to access. The facilitator will also create carer support groups in in WhatsApp to encourage carers to talk or send text messages to their peers in the same group to strengthen social support. Facilitator will communicate with participants via phone calls if they have no access to zoom or WhatsApp. The facilitator will analyse group interactions, investigate carers’ needs for support and provide feedback to them. Attendance at monthly group meetings via Zoom, the messages shared by carers in chat groups and the amount of time each carer spends in a chat group via WhatsApp will be recorded as part of data for analysis. (5) Feedback on services: The facilitators will collect carers’ feedback via regular carer support meetings and discuss the feedback in their organisation’s quality improvement meetings.
Sponsors
Flinders University
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Educational / counselling / training
Masking
Blinded (masking used) (Investigator, Outcomes Assessor)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
The carer need to meet these conditions: (1) The carer is aged 18 years or over; (2) The carer provides care support for a person living with dementia at least twice a week; (3) if a care recipient has no formal dementia diagnosis but meets the following three criteria: a) cognitive impairment using MMSE to measure or other validated tools (GDS or RUDAS) to measure; b) self-care decline and c) changed behaviours using the valid ‘Blessed Dementia Dependence Score’ .
Exclusion criteria
Carers will be excluded if they (1) have health conditions that may significantly impact their ability to participate in the study; (2) involve in other studies, and (3) cannot read English without additional assistance.
Outcome results
None listed