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

Abstract

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.

Perspectives, understandings of dementia and lived experiences from Australian Aboriginal people in Western Australia

“…These findings are in accordance to previous studies conducted across Australia, which have reported a lack of community awareness about dementia and the need for education programs to ensure carers of Aboriginal people living with dementia are well informed and to provide culturally appropriate care. 12,20 Our study also shows that there needs to be more awareness so that people do not feel shameful about it and deny that they are experiencing symptoms. There is a need for a more systematic approach to informing people about dementia in the community.…”

“…The findings from this study are in accordance with a similar qualitative study undertaken recently among ACCHO staff across Australia. 20 There was a general understanding by participants that dementia was related to 'losing your memory' and a 'change in behaviour'. Participants identified risk factors (alcohol, drug use, smoking and stress) and potential protective factors (good diet, exercise and social support).…”

“…12 A recent study by Bryant et al (2021) also emphasised the lack of culturally appropriate dementia care for Aboriginal people. 20 Indigenous communities in New Zealand, Canada and Norway are also facing similar issues in delivering culturally safe aged care services. 26 Our participants also noted that 'fear of losing them' was another reason Aboriginal people chose to keep their elders at home.…”

“…Having more Aboriginal health service staff trained in aged care, and particularly dementia care, would alleviate the situation; this has recently been acknowledged in a research paper and through the Royal Commission report on Aged Care Services. 20,27 The report has outlined some key recommendations: appointing an Aboriginal aged care commissioner, prioritising Aboriginal organisations in providing aged care services in partnership with other services, improving employment and training in cultural safety and traumainformed service delivery.…”

“…A recent study provided insights from staff at Aboriginal community-controlled health services (ACCHOs) about community needs for dementia care. 20 We explored the way Australian Aboriginal people in the community and staff from Aboriginal communitycontrolled health services (ACCHOs), in an urban/regional setting in WA, understand and define dementia, their knowledge of ways that dementia can be prevented or slowed down, their experiences of living with or caring for someone living with dementia and their awareness of the types of local support services available.…”