Dementia is a syndrome characterised by cognitive and functional decline, posing unique and complex challenges for health systems globally.1 Worldwide, there are over 55 million people living with dementia, with significant diversity in symptoms, types and demographics. Experiences vary widely across many features of the disease, including age of onset, symptoms, severity, duration and progression. This variability and associated uncertainty demand equal variability in support services and care delivery models, spanning across all care settings and multiple providers. Under these conditions, evaluation models vary widely,2 3 and it is increasingly difficult to compare interventions and ascertain the value and impact on quality of care of one intervention in relation to another.

The delivery of interventions and care models across different settings and for different populations, combined with the capability and capacity of service organisations, naturally leads to the use of a wide range of instruments and approaches to report outcomes and to measure success (clinical efficacy and effectiveness, care quality and efficiency), despite their shared focus on dementia. The use of different assessment instruments reduces the comparability of results across care models, leading to the slow translation of evidence into practice and reduced capacity to improve quality of care. It also results in fragmentation and duplication of service provision across providers, creating system-wide inefficiencies. In Australia, there is no recommendation or mandatory reporting of outcomes relating specifically to the provision or quality of care for people living with dementia, despite the increasing burden of disease associated with dementia in older people (85+ years).

There is a consensus among stakeholder groups that inefficiencies in dementia care should be minimised, and that meaningful outcome data that are consistent, comparable and feasible are crucial to improving quality of care.4 5 Core outcome sets (COS) are designed to provide consistency and comparability, though they are not yet implemented and evaluated at a policy level or as a form of national benchmarking, and the feasibility of this approach is not currently known. This research aims to bridge this gap by evaluating existing core outcomes used for monitoring quality of routine dementia care around the world, and adapting these to fit routine data collection within the Australian care setting.

Changing long-term data collection in industry (ie, outside the controlled trial environment) poses challenges relating to feasibility and consensus. It is not always possible or economically viable to change the type or amount of routinely collected data. To maximise the feasibility of collecting and reporting COS, this research will engage with industry partners to identify and evaluate the measures currently routinely collected in the Australian aged care setting. The challenge of reaching consensus will be addressed by engaging multiple stakeholders with varying perspectives on the importance of different outcome measures using a codesigned research design guided by participatory action research (PAR) principles.

Involving stakeholders in the design and development of this research will enhance the quality of research outcomes by increasing the relevance of selected measures to people affected by dementia.6 Statements from WHO proclaim that people with lived experience of dementia have the greatest direct interest in research outputs and are therefore central to the research process and should be involved in all stages.1 Involving people in research means conducting research with people, as opposed to ‘on’ or ‘for’ people.7 People with cognitive impairment are capable of contributing equally to decisions about their care and have the right to voice their preferences extending beyond individual care planning into policy and research priorities.8 The involvement of people affected by dementia in the identification of core outcomes to measure the quality of their care creates a balance between individual autonomy and collective community values that facilitates equitable access to health and care services.6 9 10

The objective of this research is to develop, test and provide implementation recommendations for a COS applicable to routine care for people living with dementia. The COS will be derived from an international literature search, current industry routine data collection and outcomes considered important by a diverse range of stakeholders. Consensus will be sought through a variety of PAR activities including meetings, discussion boards and consensus surveys.

The COS developed during this research will describe a minimum level of routinely collected information that is critical to the determination of quality of care provided to people living with a diagnosis of dementia. The COS will be trialled in aged care settings that already routinely collect data and regularly deliver mandatory reports to government. Establishing feasibility here provides the potential to disseminate the COS to additional care settings with an interest in improving quality of care for people living with a diagnosis of dementia.

At a national level, this research—the Core Outcome Measures for Improving Care (COM-IC) project—is aligned with several recommendations made in 2021 by the Royal Commission into Aged Care Quality and Safety. Specifically, the project aligns with: requirements for ongoing research into the development and use of an evidence base for quality indicators; publication and guidance on data use; methodology for benchmarking; setting improvement targets; and public reporting of performance against measurable data.11

The aim of this protocol is to outline the research plan for COM-IC. This encompasses the development of a process for involving people living with dementia in decisions about the measurement of dementia care and using participatory methods to facilitate working partnerships with stakeholders, enabling timely translation of evidence-based research into practice.