Annual progress reports

Let's CHAT (Community Health Approaches To) -Dementia in Indigenous Communities (1150337)

  • Associate Professor Dina LoGiudice (Chief Investigator A)
  • University of Melbourne
  • Budget: $2,661,502
  • Funding period: 2018 to 2024

Project Synopsis

The Let's CHAT (Community Health Approaches To) Dementia in Indigenous Communities program aims to co-develop, implement and evaluate a model of assessment and care within Aboriginal Community Controlled Health Services and Aboriginal Primary Services to optimise the timely detection (especially in its early stages) and ongoing management of older Indigenous people with dementia, or its precursor cognitive impairment not dementia (CIND). This program proposes a community wide approach engaging community members, Indigenous Health Workers and health practitioners to develop programs that deliver outcomes to optimise the overall health outcomes and quality of life of older Indigenous people with dementia or CIND, their families and communities.

Translational outcomes within primary health care settings will include:

  • decision support systems including adaptation of current MBS 715 screening software to include dementia pathways
  • culturally appropriate Indigenous Best Practice Guidelines for dementia and CIND
  • training programs to be refined, enhanced and delivered for capacity building of Indigenous Health Workers, general practitioners and health practitioners.

The program will be implemented in 4 Australian States and sites that include urban, rural and regional areas and effectiveness will be evaluated by stepped wedge cluster randomised trial to assess outcomes for translation including health economic costing and modelling.

To maximise translation and opportunities for systemic change, our project will collaborate with consumer representative groups and organisations directly involved with training and service provision. To ensure effective research and translation the outcomes will be underpinned by the active participation of members of each of the participating Indigenous communities at each stage of the program’s development, implementation and evaluation.

Awaiting final report

 

Addressing health and care needs of Aboriginal and Torres Strait Islander people living with dementia and their communities: A cluster RCT (1150361)

  • Professor Robert Sanson-Fisher (Chief Investigator A)
  • University of Newcastle
  • Budget: $3,046,294
  • Funding period: 2019 to 2025

Project Synopsis

Many Aboriginal and Torres Strait Islander people living with dementia are undiagnosed or are not provided with high-quality care. Impediments to optimal care occur at the community, healthcare and individual levels. Consequently, a whole-of-community approach is required if we are to improve outcomes. Aboriginal Community Controlled Health Services (ACCHSs) are key organisations for a community-based approach. The study will utilise a methodologically robust cluster randomised controlled trial (RCT) to examine the effectiveness and cost effectiveness of a community based, ACCHS centred initiative to increase the timely diagnosis of people living with dementia and the provision of best practice dementia care. The effectiveness of the approach in reducing psychosocial distress for both the person living with dementia and their carer will be tested. The initiative will be culturally appropriate and guided by community consultation.

Community level strategies will include community information sessions to increase dementia awareness and dementia health literacy, the development of supportive care networks, and the distribution of tailored information resources. Healthcare system strategies will include the provision of system-based tools to encourage appropriate identification and treatment of patients including routine feedback about the identification of people with dementia within the ACCHS, and education to improve clinician’s knowledge and skills regarding dementia diagnosis and management. At the individual level, persons living with dementia and their family will have access to a Family Case Manager to facilitate the coordinated, holistic and tailored delivery of health and other services.

This study will provide Level I knowledge about the effectiveness and cost effectiveness of strategies to improve Indigenous dementia-related outcomes. If found to be effective the procedures could be readily incorporated into communities across Australia.

Progress report 30 April 2023

The Aboriginal Advisory Group continues to meet and advise on critical aspects of the study. Baseline data has been collected and includes data describing health indicators of Aboriginal people attending ACCHSs, ACCHS staff and patient dementia knowledge, and care provided to Aboriginal patients who are living with dementia. We anticipate that several collaborative papers will be produced in the coming months. Strategy implementation, that aims to improve care provided to Aboriginal people living with dementia and the wellbeing of older Aboriginal people more generally, will commence in June 2023.

The Research Team held a face-to-face meeting with the participating ACCHSs in May. This was a wonderful opportunity to meet with our collaborators and plan for progression of the research. Important discussions included data sovereignty, authorship guidelines, potential manuscripts to be developed, data collected to date, and strategy development. There was collective agreement about the need to produce data and evaluate the research. We have obtained the agreement of all participating ACCHSs to a series of strategies aimed at improving care for Aboriginal people aged 45+ years attending the ACCHSs. The range of strategies include appointing study champions, audit and feedback about performance and knowledge, patient prompts and reminders, ACCHS staff training and community education. The ACCHSs will also form a Community Practice where they will meet on a bimonthly basis to discuss progress, share experiences and provide tips for implementation.

 

Dementia prevention and risk Management Program for Aboriginal Australians (DAMPAA) (1151782) 

  • Dr Kate Smith (Chief Investigator A)
  • University of Western Australia
  • Budget: $2,543,423
  • Funding period: 2018 to 2024

Project Synopsis

The cognitive health of older Aboriginal and Torres Strait Island populations is vital for the health and wellbeing of their communities. Elders hold and teach cultural knowledge, care for country and family, and are important role models for younger people. Unfortunately, as identified by our team, older Aboriginal and Torres Strait Island Australians have one of the highest rates of dementia and cognitive impairment in the world. The resulting functional limitations are not only a substantial burden to people living with dementia, but also to their families, communities and the health care system. In addition, our team has identified several modifiable risk factors for cognitive impairment and dementia in Aboriginal Australians, including head injury, hypertension, previous stroke and poor mobility. We found that over a third (36%) of the participants with cognitive impairment but not dementia (CIND) developed dementia during 6 years of follow-up, and that regular physical exercise reduces cognitive decline in the general population. This study aims to produce a targeted culturally appropriate Aboriginal Health Practitioner (AHP) coordinated risk factor management program to reduce cognitive decline and functional impairment in Aboriginal and Torres Strait Island Australians aged 45 years and over at risk of dementia (CIND). This will be achieved by:  

  1. Refining an intervention program that targets key dementia risk factors for Aboriginal people identified in our previous research and is based on existing best practice guidelines and cultural and service provider recommendations
  2. Completing a randomized controlled trial (RCT) comparing the DAMPAA with usual care
  3. Evaluating the efficacy and cost-effectiveness of the DAMPAA.

Progress report as of 30 April 2023 

Study recruitment is ongoing. To date, we have made contact with 864 Aboriginal community members, 258 participants have consented to being involved, and have been screened with the KICA-Cog tool for cognition. 76 participants were eligible for the study with 27 randomised into DAMPAA or usual care. The program activities include walking and yarning program, health and wellbeing education, goal setting and medication management. The Theory of Change co-design of the DAMPAA program has been recently published1. Qualitative interviews with participants on assessments indicate good acceptability of the KICA tool and the broader DAMPAA neuropsychological toolkit. Quantitative analysis (confirmatory factor analysis) of KICA data identify 2 factors within the KICA (named memory and language), however a gap exists in executive function items. These findings led to the team successfully applying for a MRFF grant enabling us to review and revalidate the KICA tool and strengthen its use.

In partnership with Derbarl Yerrigan Health Service we co-developed the Derbarl Yerrigan Memory clinic to ensure community members identified as having cognitive impairment could access a geriatrician review. Results on resource needs for DAMPAA co-development using the Theory of Change framework include (not limited to): appropriately trained personnel, culturally safe venue, transport, exercise and education materials and goal setting. Research staff have discussed dementia and dementia prevention and risk management with over 800 community members at expos, ACCOs, ACCHs and mainstream aged care centres. The DAMPAA protocol paper is ready to submit following the recent publication of the co-design paper.

Publications and other Resources 

1Mateo-Arriero, I, Lalovic, A, Dowden, G, et al. Co-design of dementia prevention program for Aboriginal Australians (DAMPAA). Alzheimer's Dement. 2023; 1- 8. https://doi.org/10.1002/alz.13032

 

Multifactorial, multidisciplinary nurse led Aboriginal dementia prevention through cardio-metabolic risk reduction, behaviour change and other strategies: a pragmatic RCT (1151848)

  • Professor Sandra Eades (Chief Investigator A)
  • University of Melbourne
  • Budget: $2,811,180
  • Funding period: 2018 to 2024

Project Synopsis 

Effective, pragmatic and scalable interventions are required urgently to address the disproportionate burden of dementia in Aboriginal and Torres Strait Islander people. This project aims to establish an integrated research partnership base within the Aboriginal Community Controlled Health Sector (ACCHS) to develop, implement and quantify the acceptability, feasibility and effectiveness of a multifaceted, multidisciplinary nurse-led program to reduce the risk of cognitive decline and dementia in Aboriginal people, targeting individuals at high risk.  

The project will operate in one region of Australia within a 2-hour drive radius and an Aboriginal population over 35 years of age of more than 5000 individuals. In partnership with two ACCHs and other Aboriginal organisations in the region more than 1000 Aboriginal adults aged 35 to 60 years old will be invited for baseline risk profile assessment of their dementia risk including features of the metabolic syndrome. Individuals with at least two features of the metabolic syndrome will be eligible for recruitment to a randomised controlled trial of a multifactorial, multidisciplinary nurse led intervention to reduce their metabolic syndrome risk factors and decline in cognitive function over a 24-month intervention period. A control group will be provided with a basic program of risk reduction in addition to their usual clinical care. Both groups will be compared in final assessments of dementia risk profile and cognitive functioning at 24 months to determine the effectiveness of the tailored Aboriginal specific pragmatic multifactorial and multidisciplinary nurse led intervention.

Progress report as of 30 April 2023

We have now recruited 226 participants into the study, with 215 of these having completed their initial baseline appointment, and 176 have completed their first follow-up appointment. 67 participants have completed their 6-month follow-up appointment and 29 have completed their 12-month follow-up. This reflects successful progress of the study and the conduct of the intervention processes and reflects a positive response by the community to the study. All intervention staff involved in the dietary counselling sessions and exercise classes have been recruited and trained at both sites as have the Aboriginal Health Practitioners. Both our South West Aboriginal Medical Service and Derbarl Yerrigan Health Service sites are involved in two-way knowledge exchange to support progress.

The team have been working closely with the communities and the Aboriginal health services and have recruited Aboriginal staff to implement the intervention and collect the data from the participants.

 

Our MOB (Mind Our Brain): Dementia prevention across the life course with Aboriginal Australians (1151851) 

  • Dr Kylie Radford (Chief Investigator A)
  • University of New South Wales
  • Budget: $3,020,383 
  • Funding period: 2018 to 2024

Project Synopsis 

Whilst ‘Healthy Ageing’ features in the Department of Health Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan 2013–2023, its evidence base and translation into practice with Aboriginal Australians remains extremely limited. With increasing lifespan, healthy ageing is becoming synonymous with healthy brain ageing and dementia prevention is being recognized as a national and global priority. The current proposal prioritises risk factors and dementia prevention strategies in Aboriginal and Torres Strait Islander Australians. Building on established, long-term relationships with partner Aboriginal communities and organisations, this project will strengthen the evidence base in relation to the primary causes and life course risk (and protective) factors that are contributing to higher rates of dementia observed in Aboriginal and Torres Strait Islander Australians, across remote, regional and urban contexts. Importantly, this project will also begin the process of translating new evidence into targeted, appropriate and Aboriginal community driven translation strategies, acknowledging that healthy ageing and effective dementia prevention is a life-long endeavour incorporating social and emotional wellbeing (SEWB), and physical health.

Progress report as of 30 April 2023

This project involves recruitment of a community sample of Aboriginal and Torres Strait Islander peoples aged 55+ to extend the Koori Growing Old Well Study (KGOWS) observational cohort study of ageing and dementia. Planned in collaboration with older community members and Aboriginal community-controlled organisations, this wave of KGOWS involves a life-course survey of health and wellbeing, medical assessments, as well as neuroimaging, serum, and genetic biomarkers to examine dementia risk and prevention in more detail. We have completed >60% of our planned recruitment and anticipate we will reach our recruitment target over the coming year with strong partnerships in place and employment of new community-based researchers in regional sites. We have also recruited the first groups for our health ageing trial (STOMP!), which will be the focus of recruitment in Sydney and Coffs Harbour sites for the next 12 months.