Let’s CHAT (community health approaches to) dementia in Aboriginal and Torres Strait Islander communities: protocol for a stepped wedge cluster randomised controlled trial

Abstract

Background: Documented rates of dementia and cognitive impairment not dementia (CIND) in older Aboriginal and Torres Strait Islander Peoples is 3-5 times higher than the rest of the population, and current evidence suggests this condition is under-diagnosed and under-managed in a clinical primary care setting. This study aims to implement and evaluate a culturally responsive best practice model of care to optimise the detection and management of people with cognitive impairment and/or dementia, and to improve the quality of life of carers and older Aboriginal and Torres Islander Peoples with cognitive impairment. Methods/design: The prospective study will use a stepped-wedge cluster randomised controlled trial design working with 12 Aboriginal Community Controlled Health Services (ACCHSs) across four states of Australia. Utilising a co-design approach, health system adaptations will be implemented including (i) development of a best practice guide for cognitive impairment and dementia in Aboriginal and Torres Strait Islander communities (ii) education programs for health professionals supported by local champions and (iii) development of decision support systems for local medical software. In addition, the study will utilise a knowledge translation framework, the Integrated Promoting Action on Research Implementation in Health Services (iPARIHS) Framework, to promote long-term sustainable practice change. Process evaluation will also be undertaken to measure the quality, fidelity and contextual influences on the outcomes of the implementation. The primary outcome measures will be rates of documentation of dementia and CIND, and evidence of improved management of dementia and CIND among older Indigenous peoples attending Aboriginal and Torres Strait Islander primary care services through health system changes. The secondary outcomes will be improvements to the quality of life of older Indigenous peoples with dementia and CIND, as well as that of their carers and families. Discussion: The Let's CHAT Dementia project will co-design, implement and evaluate a culturally responsive best practice model of care embedded within current Indigenous primary health care. The best practice model of care has the potential to optimise the timely detection (especially in the early stages) and improve the ongoing management of people with dementia or cognitive impairment.

How can dementia diagnosis and care for Aboriginal and Torres Strait Islander people be improved? Perspectives of healthcare providers providing care in Aboriginal community controlled health services

“…Given their essential role in delivering care to Aboriginal people, it is crucial that ACCHSs have a role in developing solutions including a voice at the policy level to ensure that the structures and organisations that support older people with dementia in communities, such as Dementia Australia and My Aged Care, provide culturally appropriate care. Future research should partner with the ACCHS sector to explore approaches to promoting understanding and reducing stigma around dementia, as well as implement and test culturally responsive programs to reduce dementia risk and enhance the care of Aboriginal people living with dementia and their families [ 9 , 12 ].…”

“…Best practice management of dementia may help to reduce the impact of behavioural and psychosocial symptoms, and ensure individuals can live at home for longer periods [ 11 ]. Timely diagnosis and management of dementia also provides an opportunity for individuals, their carers and families to be well supported [ 12 ]. As a central provider of primary healthcare for Aboriginal people, Aboriginal Community Controlled Health Services (ACCHSs) have a critical role to play in recognising symptoms of cognitive impairment, facilitating timely diagnosis of dementia, and managing the impacts of dementia [ 13 ].…”

“…Limited evidence similarly suggests a diagnosis is not made in a timely fashion for Aboriginal people [ 1 ]. A study in the Kimberley region of Western Australia by Bradley et al 2020 indicated only 38 % of Aboriginal people with dementia had been diagnosed by their GP [ 12 ]. A range of factors such as stigma associated with dementia, a fear of having to leave Country (i.e.…”

“…A range of factors such as stigma associated with dementia, a fear of having to leave Country (i.e. relocation to a metropolitan or regional centre to receive treatment or residential care) [ 19 ], a lack of culturally appropriate services, and complex and competing issues facing individuals and communities, have been identified as affecting the timely diagnosis of dementia for Aboriginal Australians [ 12 ].…”

Aging Well for Indigenous Peoples: A Scoping Review

“…Furthermore, age-related conditions such as dementia are more prevalent in Indigenous populations and affect people at a younger age (9)(10)(11)(12). The number of Indigenous peoples is growing (13,14) and for many Indigenous populations, life expectancy is increasing (15). Greater proportions of Indigenous peoples over 65 years are surviving into older age (16)(17)(18)(19)(20).…”