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Development of a model of dementia support and pathway for culturally and linguistically diverse communities using co-creation and participatory action research
  1. Dianne Goeman,
  2. Jordan King,
  3. Susan Koch
  1. RDNS Institute, Royal District Nursing Service Ltd, St Kilda, Victoria, Australia
  1. Correspondence to Dr Dianne Goeman; dgoeman{at}rdns.com.au

Abstract

Objective To develop an inclusive model of culturally sensitive support, using a specialist dementia nurse (SDN), to assist people with dementia from culturally and linguistically diverse (CALD) communities and their carers to overcome barriers to accessing health and social care services.

Design Co-creation and participatory action research, based on reflection, data collection, interaction and feedback from participants and stakeholders.

Setting An SDN support model embedded within a home nursing service in Melbourne, Australia was implemented between October 2013 and October 2015.

Participants People experiencing memory loss or with a diagnosis of dementia from CALD backgrounds and their carers and family living in the community setting and expert stakeholders.

Data collection and analysis Reflections from the SDN on interactions with participants and expert stakeholder opinion informed the CALD dementia support model and pathway.

Results Interaction with 62 people living with memory loss or dementia from CALD backgrounds, carers or family members receiving support from the SDN and feedback from 13 expert stakeholders from community aged-care services, consumer advocacy organisations and ethnic community group representatives informed the development and refinement of the CALD dementia model of care and pathway. We delineate the three components of the ‘SDN’ model: the organisational support; a description of the role; and the competencies needed. Additionally, we provide an accompanying pathway for use by health professionals delivering care to consumers with dementia from CALD backgrounds.

Conclusions Our culturally sensitive model of dementia care and accompanying pathway allows for the tailoring of health and social support to assist people from CALD backgrounds, their carers and families to adjust to living with memory loss and remain living in the community as long as possible. The model and accompanying pathway also have the potential to be rolled out nationally for use by health professionals across a variety of health services.

  • PRIMARY CARE
  • PUBLIC HEALTH

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors DG and SK conceived and initiated the study. JK undertook the role of the specialist dementia nurse. DG and JK undertook the data collection. DG, JK and SK undertook the data analysis and the final drafting of the article and revised it for critical content, approved the final version of the paper and accept accountability for all aspects of the work. JK and DG developed and refined the CALD Dementia Care Pathway.

  • Funding Funding for this project was proudly provided by the Lord Mayors Charitable Foundation.

  • Competing interests None declared.

  • Ethics approval Ethics approval to conduct the study was obtained from the Royal District Nursing Service Human Research Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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