Developing a best-practice guide to support care for Aboriginal and Torres Strait Islander peoples living with cognitive impairment and dementia: Prioritising inclusivity, consensus-building and cultural values

Abstract

Objectives

Dementia is a global health issue. Although best-practice guidelines for detection and management of dementia exist for primary care, there is a pressing need for culturally appropriate resources to support care for Aboriginal and Torres Strait Islander people living with cognitive impairment and dementia.

Methods

A best-practice guide (BPG) for cognitive and dementia care for Aboriginal and Torres Strait Islander people attending primary care was developed incorporating evidence-based clinical care recommendations and cultural dimensions. Adopting research approaches characterised by inclusivity and collaboration, guide development included: (i) a planning phase with stakeholders; (ii) literature review; (iii) a draft development phase; (iv) a modified Delphi (e-Delphi) process; (v) in-depth cultural review by the project's Indigenous Reference Group and health service staff; (vi) and final clinical review.

Results

Stakeholders wanted a BPG that was: comprehensive, easy to follow and practical; incorporated cultural considerations and; took account of the ongoing effects of colonisation. A two-part e-Delphi process, completed by 39 and 31 purposively selected participants respectively, reached consensus on: guide aims; cultural principles for inclusion; detection processes; future planning; referral to specialist cognition and palliative care services. Cultural review resulted in further integration of cultural principles and recommended development of additional resources. Further minor modifications were made during the final clinical review for peak body endorsement.

Discussion

A rigorous development and review process has resulted in a culturally adapted resource health professionals can use to guide care with Aboriginal and Torres Strait Islander patients at risk of or experiencing cognitive impairment or dementia.