Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience

Abstract

Dementia in Australia's Aboriginal and Torres Strait Islander population is an area of significant health and community concern. In this article, we use a hermeneutic mode of interpretation to deepen understanding of experience and meaning in dementia for family carers of older Aboriginal people in urban Australia. Specifically, we draw from the hermeneutic concept of "world disclosure" to illuminate the dementia experience in three ways: through an artwork of the brain and dementia; through concrete description of the lived relation of caregiving; and through an epochal perspective on the significance of contemporary caregiving in dementia. Using narrative and visual knowledge, this three-fold approach brings to the forefront the importance of ontological and existential meanings which resonate for Aboriginal families in the dementia caregiving experience.

An integrative review of Indigenous informal caregiving in the context of dementia care

“…Sharing dementia experiences between generations can reduce stigmas and enhance the community's ability to care for members living with dementia in familiar surroundings (Johnston et al, 2020). Getting the community involved in the caregiving process represents a meaningful way to integrate Indigenous perspectives into health care (Arkles et al, 2018; Lindeman et al, 2012). Placements in Western nursing homes are not a solution while acknowledging there are instances when institutionalization becomes unavoidable.…”

“…Garvey et al (2011) suggest Indigenous youth be educated in dementia to better care for ageing community members. This strategy allows for broader community involvement and shifts responsibility from individual caregivers to the wider community (Arkles et al, 2018; Garvey et al, 2011; Gott et al, 2018). Community‐driven youth education aims to sensitize youth and community members to caregiver roles and supports early detection (Garvey et al, 2011; Goldberg et al, 2018).…”

The Well-Being of Carers of Older Aboriginal People Living in the Kimberley Region of Remote Western Australia: Empowerment, Depression, and Carer Burden

“…In addition, those who felt most burdened by their role may have been reluctant to participate in the study due to their caring responsibilities. Alternatively, the Western concept of carer burden may not capture the complete picture for Aboriginal carers, where culture, land and place, traditions, community, and spirituality are essential contributors to carer general wellbeing (Arkles et al, 2018;Gibson et al, 2018). A culturally responsive tool to assess carer burden which is developed from a community perspective and not simply adapted for language is required.…”

Developer/Adapter Method: A Community-Based Approach to Improve Health in Indigenous Communities

“…Researchers studying dementia in Australia's Aboriginal and Torres Strait Islander population examined the dementia experience through artwork of the brain and dementia, as well as concrete descriptions of caregiving and the significance of caregiving in dementia, to give meanings that resonate with lived experience in Aboriginal families (Arkles et al, 2020). The D/A method could be used to incorporate the cultural and contextual specificity of this work into health care practices serving Indigenous people (Chouinard & Cousins, 2007).…”