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

Background: Aboriginal and/or Torres Strait Islander people experience dementia at a rate three to five times higher than the general Australian population. 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. Little is known about the barriers and enablers to Aboriginal people receiving a timely dementia diagnosis and appropriate care once diagnosed. This study aims to explore, from the perspective of healthcare providers in the ACCHS sector across urban, regional and remote communities, the barriers and enablers to the provision of dementia diagnosis and care. Methods: A qualitative study involving semi-structured interviews with staff members working in the ACCHS sector. Aboriginal Health Workers, General Practitioners, nurses, practice or program managers, and Chief Executive Officers were eligible to participate. Consenting ACCHS staff completed a telephone interview administered by a trained interviewer. Interviews were audio-recorded, transcribed, and analysed using qualitative content analysis. Results: Sixteen staff from 10 ACCHSs participated. Most participants perceived their communities had a limited understanding of dementia. Symptoms of dementia were usually noticed by the GP or another healthcare worker at the ACCHS who had an ongoing relationship with the person. Most participants reported that their service had established referral pathways with either hospital-based geriatricians, geriatricians located with aged care assessment teams, or specialists who visited communities periodically. Key enablers to high quality dementia care included the use of routine health assessments as a mechanism for diagnosis; relationships within communities to support diagnosis and care; community and family relationships; comprehensive and holistic care models; and the use of tailored visual resources to support care. Key barriers to high quality care included: denial and stigma; dementia being perceived as a low priority health condition; limited community awareness and understanding of dementia; lack of staff education and training about dementia; and numerous gaps in service delivery. Conclusions: Substantially increased investments in supporting best-practice diagnosis and management of dementia in Aboriginal communities are required. ACCHSs have key strengths that should be drawn upon in developing solutions to identified barriers to care.