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Original Research

‘Gotta be sit down and worked out together’: views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians

Submitted: 28 October 2010
Revised: 15 May 2011
Published: 14 June 2011

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Author(s) : Smith K, Flicker L, Shadforth G, Carroll E, Ralph N, Atkinson D, Lindeman M, Schaper F, Lautenschlager NT, LoGiudice D.

Melissa Lindeman

Citation: Smith K, Flicker L, Shadforth G, Carroll E, Ralph N, Atkinson D, Lindeman M, Schaper F, Lautenschlager NT, LoGiudice D.  ‘Gotta be sit down and worked out together’: views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians. Rural and Remote Health 11: 1650. (Online) 2011. Available: http://www.rrh.org.au

ABSTRACT

Introduction:  Dementia is five-fold more prevalent among Aboriginal than non-Aboriginal Australians. Despite this, the quality of care available to people living with dementia in remote Aboriginal communities is poor. The objective of this study was to determine ways to overcome factors affecting the successful delivery of services to Aboriginal people with dementia living in remote communities, and to their families and communities.
Methods:  This qualitative research took place in the Kimberley Region of Western Australia. Data collection occurred in three stages: (1) interviews with service providers to identify the services available; (2) interviews with the caregivers of Aboriginal people living with dementia and community-based care workers; and (3) focus groups with community representatives and community care staff. Each stage was concluded when no new themes emerged. At each stage the transcribed information was analysed and joint interpretation identified common themes.
Results:  In total, 42 service providers, 31 caregivers and community-based care workers were interviewed and 3 focus groups were conducted. Obstacles to accessing quality care were mentioned and recommendations on ways to improve care were made. The key themes that emerged were caregiver role, perspectives of dementia, community and culturally-appropriate care, workforce, education and training, issues affecting remote communities and service issues. Detailed information on how each theme affects the successful delivery of dementia care is provided.
Conclusions:  These research findings indicate that people living with dementia and their caregivers in remote Aboriginal communities are struggling to cope. They are requesting and require better community care. Implementing a culturally safe model of dementia care for remote Aboriginal communities that encompasses the recommendations made and builds on the strengths of the communities could potentially deliver the required improvements to dementia care for this population.

Key words: Aboriginal, Australia, caregivers, community care, dementia, Indigenous.

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