Exploring the role of a facilitator in supporting family carers when embedding the iSupport for Dementia programme in care services: A qualitative study.

AIMS: To explore stakeholders' perceptions of a facilitator's role in supporting carers when embedding iSupport for Dementia psychoeducation program, in care services. METHODS: A qualitative descriptive study design was applied. Data were collected from workshops and interviews with carers of people living with dementia (PLWD)and with health and social care professionals from two tertiary hospitals and two community aged care organisations across three Australian states between October 2021 and March 2022. A thematic analysis was used to analyse data. The COREQ guideline was followed to report our findings. RESULTS: A total of 30 family carers and 45 health and social care professionals participated in the study. Three main themes and seven subthemes were identified from the data. We described the main themes as (1) the facilitator's role at the time of dementia diagnosis, (2) the facilitator's role throughout the everyday dementia care journey and (3) the facilitator's role during transition moments. CONCLUSIONS: Caring for family members with dementia is demanding and stressful for carers. Embedding a facilitator-enabled iSupport for Dementia program in hospital and community aged care settings has the potential to mitigate sources of stress associated with care recipient factors, carer factors and care service factors, and improve the health and well-being of carers and those for whom they care. RELEVANCE TO CLINICAL PRACTICE: Our findings will inform the establishment of iSupport facilitators appointed by dementia care providers in hospital and community care settings and help determine their roles and responsibilities in delivering the iSupport program. Our findings relate to nurse-led and coordinated dementia care in hospital and community aged care settings. PATIENT OR PUBLIC CONTRIBUTION: This study was co-designed with stakeholders from two aged care organisations and two tertiary hospitals. The study participants were staff employed by these organisations and carers of PLWD who were service users.

Creating 'Partnership in iSupport program' to optimise family carers' impact on dementia care: a randomised controlled trial protocol.

BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the 'Partnership in iSupport program' that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers' experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers' experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the 'Partnership in iSupport program' in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718 . Registered February 4th, 2022.

Stakeholders' perspectives on adapting the World Health Organization iSupport for Dementia in Australia.

BACKGROUND: In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. AIM: The aim of the study was to identify stakeholders' perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. METHODS: An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May-July 2018. A thematic analysis was utilised to analyse data and identify findings. RESULTS: In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. CONCLUSION: Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers.

Impact of consumer-directed care on quality of life in the community aged care sector.

AIM: All consumer-directed care (CDC) models aim to transfer "choice" and "control" over the allocated funds from the aged care provider to service recipients. This study presents an empirical assessment of the relationships between quality of life for older adults aged ≥65 years receiving community aged care services in Australia under CDC compared with those receiving traditional provider-directed care (PDC). METHODS: Self-reported quality of life (health status and capabilities) were measured for older adults receiving community aged care services (n = 139) using the EuroQoL five dimensions five-level version and the older people-specific capability index (ICECAP-O) instruments. The relationship between quality of life, mode of service delivery, and other sociodemographic characteristics were examined using descriptive statistical and multivariate regression analyses. RESULTS: The quality of life of individuals receiving CDC and PDC was similar (ICECAP-O: CDC mean 0.74 [SD 0.17], PDC mean 0.78 [SD 0.17]. EuroQoL five dimensions five-level version: CDC mean 0.46 [SD 0.33], PDC mean 0.49 [SD0.27]). In general, individuals in receipt of CDC reported higher levels of capability in the control and independence dimension for the ICECAP-O relative to those receiving PDC. Multivariate regression analysis showed that living alone was associated with higher quality of life (P = 0.01) and higher levels of capability (P = 0.02). CONCLUSIONS: Although no discernible differences in overall quality of life were found, higher levels of self-reported control and independence for those in receipt of CDC suggest that the main policy objectives of transferring "choice" and "control" away from the aged care provider and to the individual are being met. Geriatr Gerontol Int 2017; 17: 1399-1405.