Anita Mei Yoke Goh

Objectives: This paper reports the health economic component of the broader Promoting Independence Through Quality Dementia Care at Home (PITCH). The broader PITCH trial primarily evaluated the effect of dementia training on home care workers' competence in providing dementia care; this analysis evaluated intervention costs and selected secondary client and caregiver outcomes. Methods: The PITCH intervention was tested via a multi‐site national pragmatic stepped‐wedge cluster randomised clinical trial, conducted across three Australian states. A micro‐costing approach was used to estimate intervention and resource use costs. Secondary outcomes for clients and caregivers, including quality of life (QoL), caregiver burden and dyadic interaction, were assessed. Means (SDs) described costs and outcomes, with linear and multilevel mixed‐effects regression used to estimate crude and adjusted mean differences, respectively. Results: There were no significant improvements in most client and caregiver health, QoL, caregiver burden or dyadic interaction outcomes during the intervention phase, with decreases in proxy‐reported Dementia QoL Utility (DEMQOL‐U) and client self‐reported visual analogue scale (EQ VAS). Improvements in caregiver burden and dyadic interaction were observed but were not statistically significant. Total costs increased from AU$68,925 in the control to AU$133,660 in the intervention phase, with an adjusted mean difference of AU$67,146 (95% CI: AU$16,957 to AU$117,334). Conclusions: This health economic analysis should be interpreted separately from and alongside, the main PITCH trial findings on the primary outcome of home care workers' competence. Within this secondary analysis, PITCH was associated with higher total costs during the intervention phase and no clear evidence of improvement in the selected secondary client and caregiver outcomes.

Background: Progressive neurological disorders (PNDs) are life‐limiting conditions with complex trajectories. PNDs require holistic, person‐centred care that responds to the needs of both individuals and their families, including the provision of palliative and end‐of‐life (EOL) care. Aims: This systematic review aimed to identify and synthesize existing international guidelines addressing palliative and EOL care in adult PND populations, with particular attention to their quality and scope. Methods: We searched databases and gray literature sources for guidelines published between January 2013 and February 2026. Thirty‐three guidelines were included for review. We appraised guidelines to assess quality and comprehensiveness against the World Health Organization's (WHO) domains of palliative care. We conducted inductive content analysis to identify key themes. Results: Guidelines predominantly were published from high‐income countries and focused on dementia. Overall guideline quality was high. Most addressed physical, psychosocial, and social dimensions of care of the WHO domains; however, spiritual wellbeing was inconsistently addressed. Six interrelated themes emerged: (i) holistic symptom management; (ii) recognition of families and caregivers as partners in care; (iii) early and ongoing communication; (iv) value‐aligned decision‐making; (v) multidisciplinary team expertise; (vi) navigation of medicolegal complexities. Conclusion: Findings indicate broad international consensus on the principles of high‐quality palliative care in PND, while highlighting gaps in disease/diagnosis representation, spiritual care, and global equity. Future research could consider the importance of disease‐specific guidelines, covering regions and countries from across a range of high‐, middle‐, and lower‐income countries. Clinical Relevance: Clinicians caring for people with progressive neurological disorders can draw on the internationally consistent principles identified in this review including early integration of palliative care, proactive and open communication, and recognition of families as partners in care to benchmark and strengthen their practice. Gaps in spiritual wellbeing, condition‐specific guidance, clinical supports, and equitable access represent clear targets for workforce education, service development, and health policy advocacy.

Motivational changes are determinants of healthy aging, social engagement, and functional independence, and may signal early neurodegenerative risk. Existing assessment approaches in aging typically treat motivation as a unitary construct. Here, we introduce MotDem, an age-appropriate measure of motivation co-designed with people living with dementia, carers, and clinicians. Across a broad adult lifespan sample (18-80 years), MotDem revealed a robust three-domain motivational architecture encompassing goal-directed behaviour, social reward, and pleasure, with a fourth satiety factor retained as exploratory. This structure was replicated in an independent older cohort (45-80 years) from a different national context. MotDem showed strong convergence with established measures of apathy and anhedonia, alongside more modest associations with depressive symptomatology. Together, these findings show that motivational aging is multifaceted and poorly captured by traditional unitary assessment. MotDem provides a multidimensional framework for measuring distinct motivational drivers of heterogeneous aging trajectories, with implications for resilience, wellbeing, and neurodegenerative risk.

Background: Neuropsychiatric symptoms (NPS) are highly prevalent in dementia. While biomarkers reflecting amyloid, tau, neuronal injury, and glial activation are increasingly used in dementia research, their association with NPS remains unclear. Objective: To identify and characterise associations between biomarkers and NPS in people with young-onset dementia (YOD). Methods: We conducted a systematic review and meta-analysis of studies examining associations between validated biomarkers and NPS in individuals with Alzheimer's disease (AD), frontotemporal dementia (FTD), Huntington's disease (HD), and vascular dementia (VaD), published between 2010 and 2024. The review followed PRISMA guidelines and was prospectively registered (PROSPERO; CRD42022314243). Results: Principle meta-analyses identified no consistent evidence for associations between NPS and amyloid, tau, and neuronal biomarkers in AD, with limited data available for glial biomarkers. There was a scarcity of studies investigating the relationship between biomarkers and NPS in HD, VaD, and FTD. Conclusions: The absence of consistent associations likely reflects substantial heterogeneity in pathology, clinical presentation, and methodological approaches, particularly within YOD populations, rather than a true lack of biological linkage. NPS in dementia may emerge from complex bio-psycho-social interactions that transcend classical biomarker models. Longitudinal, multimodal studies are needed to better delineate these relationships.

Background: The challenges of implementing evidence-based palliative care in residential aged care are widely acknowledged. Facilitation is often cited as an effective implementation strategy to address these challenges. However, there is limited guidance on how this strategy applies specifically to this context. Aim: To understand the contextual factors and causal processes (mechanisms) that influence the facilitation of interventions designed to improve palliative care in residential aged care, and to develop a realist programme theory that explains how best to support their implementation. Design: Realist review guided by the RAMESES standards. Protocol is registered on PROSPERO (CRD42023447043). Data sources: MEDLINE, CINAHL and PsycINFO databases were searched for studies on palliative care interventions in residential aged care that used facilitation, published between 2000 and 2024. Data extraction and synthesis followed realist principles to identify context-mechanism-outcome configurations. Results: Twenty-three articles describing 16 palliative care interventions were included in the review. Facilitation was found to be effective when it fostered a shared understanding of the intervention, tailored its components to fit staff workflow and built trust among stakeholders. These processes contributed to normalisation of the intervention and transition of ownership of both the intervention and facilitation process. Proactive support from the facilitator in addition to action learning was most effective at developing learning systems and staff comfort and confidence. Conclusions: The realist programme theory developed in this study provides a foundation for ongoing testing and refinement, with the aim of accelerating evidence uptake by residential aged care staff and ultimately improving palliative care outcomes for residents.

Background: Research has yielded advancements in understanding dementia and developing promising interventions. However, translating research findings into routine practice and policy remains a significant challenge. Additionally, there are few studies of implementation; that is, examination of the processes, outcomes, and factors influencing implementation of interventions. Implementation science provides a critical framework for addressing this gap by investigating factors that influence the adoption and sustainment of evidence‐based dementia care interventions in real‐world settings. Method: This presentation provides an up‐to‐date overview of the evolving field of dementia implementation science, highlighting its role in improving care outcomes. The presenter outlines key theoretical frameworks and the core principles of implementation science, including identifying and addressing barriers to implementation, developing and testing implementation strategies, and evaluating the effectiveness of these strategies. This presentation uses as an example an applied research example from Australia – the Promoting Independence Through quality dementia Care in The Home (PITCH) study, aimed to improve sense of competency in dementia home care and outcomes for people with dementia via a co‐designed evidence‐based dementia training program. Result: A national cluster stepped‐wedge randomized controlled trial tested PITCH, alongside a health economic and process evaluation. Overall, the interactive, adult‐learning‐based, face‐to‐face PITCH program was effective in improving sense of competence in dementia care as well as knowledge and attitudes. For carers and people with dementia, no differences in health and quality of life outcomes were found. The process evaluation explored barriers and facilitators to implementation of PITCH, explored its acceptability, feasibility, suitability, and sustainability, and whether participation led to changes in practice. Themes from the process evaluation (from qualitative interviews and surveys) investigating the experiences and opinions of the intervention receivers and intervention deliverers included their motivations to participate, perceived benefits of PITCH, challenges of involvement, and suggestions for improvement, analyzed using the Theoretical Domains Framework. Results inform how the PITCH intervention could be modified to improve future wider implementation. Conclusion: By applying rigorous methodologies, the field of implementation science offers a promising avenue for maximizing the impact of dementia research and enhancing the quality of life for individuals living with dementia and their caregivers.

Background: This study describes the protocol for a realist process evaluation of IMPART (Improving Palliative Care in Residential Aged Care Using Telehealth), to be trialed through a pragmatic stepped-wedge cluster randomized controlled trial in Australia. IMPART consists of 2 key intervention activities: specialist palliative support provided through telehealth and tailored staff education. Objective: The aims of the realist process evaluation are to (1) identify and explore the contexts and mechanisms that enable or hinder the implementation of the IMPART intervention, and (2) develop and refine a program theory to determine whether and how successful implementation of IMPART can be facilitated. Methods: We will conduct this process evaluation in 3 phases, guided by a realist framework. First, to hypothesize an initial program theory, we will review trial documentation and literature to determine how IMPART is expected to work and identify the barriers and facilitators likely to influence implementation. To test this theory in the second phase, a case study methodology will draw on multiple data sources (qualitative and quantitative) from 10 participating residential aged care facilities. These include interviews with staff involved in implementation, data on staff engagement with training, program documentation, activity logs, action plans, and facility information. In the final phase, program theories developed from the case studies will be refined through consultation with the IMPART research team. This will inform the development of a refined program theory that provides key information about what works, for whom, how, and in what circumstances in the implementation of interventions aiming to improve palliative care in residential aged care. Results: This study was reviewed and approved by the Royal Melbourne Hospital Human Research Ethics Committee. The randomized controlled trial commenced in May 2023, with completion anticipated in November 2025. Funding began in January 2022. Data for the realist process evaluation will be collected between May 2023 and February 2026. As of October 2025, a total of 61 interviews have been completed. Data analysis is ongoing, and a publication describing the results will be prepared in 2026. Conclusions: Applying a realist framework to explore process outcomes allows for an in-depth inquiry into what works, for whom, how, and in what circumstances in the implementation of complex interventions aiming to improve palliative care in residential aged care. This realist process evaluation has the potential to provide transferable, context-specific findings that can support the development of meaningful policy and accelerate practice change. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12622000760774; https://tinyurl.com/2uv34unr International Registered Report Identifier (IRRID): DERR1-10.2196/68332

The quality of palliative and end-of-life care (EOLC) in residential aged care (RACFs) is variable, and often suboptimal. The aim of IMPART is to improve palliative care in RACFs. IMPART provides online training and telehealth palliative-geriatric support to aged care staff and family physicians/general practitioners (GPs) to enable timely EOLC discussions, clinical support, and improve documentation of care preferences. This may lead to preference-based care, reduction of unplanned hospitalization, and improved quality of life and EOLC. This protocol describes a study to evaluate the effectiveness, cost, and implementation process of the IMPART intervention. This study is a pragmatic, stepped-wedge, cluster randomized controlled trial across 10 RACFs to evaluate the IMPART intervention. Clusters are randomly assigned to intervention or control groups. The IMPART intervention group 1) receives timely end-of-life support from specialist In-Reach teams using telehealth; 2) engages RACF staff and GPs in a Planning Ahead Team to reflect on current practices and co-design an Action Plan to improve EOLC planning and processes; 3) receives an online interactive, needs-based EOLC education program for staff and GPs working in RACFs. The control groups receive the IMPART intervention in subsequent waves. The primary outcome measure is reduction of unplanned hospital admissions and avoidable hospital transfers for residents at end-of-life when appropriate care in their RACF is possible and consistent with residents’ wishes. Secondary outcomes include reduction of emergency department presentations and length of stay of unplanned hospital admissions, and improvement in residents’ quality of life, comfort, satisfaction, and quality of EOLC. RACFs are high-mortality settings, yet the quality of palliative and EOLC varies across facilities. There is an urgent need for timely and integrated high-quality palliative care delivered in this context. Implementing IMPART, as a novel telehealth intervention, aims to address this need. This large multisite trial will provide robust evidence about the impact of the intervention (efficacy, cost-effectiveness, and process evaluation), to inform future roll-out and scale-up into the residential aged care sector. anzctr.org.au; ACTRN12622000760774. Prospectively registered on 27/05/2022.

Introduction: Young-onset dementia (YOD) is a dementia where symptom onset occurs at less than 65 years of age. There has been increased recognition of YOD with improved diagnostic assessments and the introduction of the National Disability Insurance Scheme (NDIS). The Joint Solutions project aimed to evaluate the gaps and barriers along the pathway of care in Australia from a range of stakeholder perspectives to investigate access to services from those who have YOD and those who provide care for them. Methods: A cross-sectional quantitative approach was used, with questionnaires designed in consultation with general practitioners (GPs), clinicians, people with YOD, caregivers and community service providers. Results: 313 people responded, including 45% lived experience ( n = 33 people with YOD; 105 caregivers), 30% clinicians ( n = 7 GPs; n = 86 clinicians), and 25% community providers. All states of Australia were represented, with Victoria having the largest proportion of respondents (39%). Time to diagnosis was 12 months from symptom onset for 70% of caregivers. Up to 90% of caregivers reported their family member with YOD had cognitive testing and neuroimaging. Access to age-appropriate post-diagnostic support varied, with 40% of caregivers reporting their family member received allied health and psychological support. There was limited information provided on employment, driving, legal and financial issues. Sixty percent of people with lived experience stated they had difficulties accessing the NDIS. Discussion: There is improvement in the diagnosis of YOD but access to and availability of post-diagnostic support varies. More work is needed to improve equity and collaboration between service providers and clinicians and those affected by YOD.