Kaele Stokes, Executive Director, Advocacy and Research

Dementia Australia

More than 400,000 Australians are living with dementia in Australia, while over 1.5 million people are involved in their care. Despite the numbers of people directly and indirectly impacted, community attitudes to dementia are still shaped by a lack of understanding about dementia, which means that our spaces, services, and attitudes are not always inclusive of people living with dementia, their families and carers. 

Dementia Australia recently published Half the Story, a free guide co-authored by people impacted by dementia for organisations to engage in meaningful consultation with people living with dementia, their families and carers. Half the Story offers information, tips and strategies for inclusive consultation which seeks out, affirms, and ratifies the voices of people impacted by dementia. The guide has been created to support organisations to set up their consultation process, refine their approach and increase the participation and engagement of people impacted by dementia.

As is detailed in Half the Story, meaningful consultation is necessary to understand the full story. This is best explained by a person living with dementia quoted in Half the Story who said, ‘You cannot feel what it is like inside our minds. Without us, you only have half the story.’

Half the Story is a go-to guide for understanding the full experience of people living with dementia, their families and carers. It explores the importance of meaningful consultation, various consultation approaches and how to consult in an accessible way. Many of the recommendations in Half the Story are based on the advice from people living with dementia, their families and carers who have had years of advocacy experience and would like to share it with organisations. 

Why engage in meaningful consultation? 
People living with dementia, families and carers have important things to say about life with the condition, their hopes for the future, and areas where better support is needed. Through consultation, you can identify opportunities for improvement and develop solutions together. Meaningful consultation respects people’s dignity and human rights, recognises knowledge and skills, amplifies the voices of advocates, and involves people in decisions that will affect their lives. 

What does meaningful consultation look like? 
Consultation becomes meaningful when we hear, respect, and act upon the ideas, opinions, and experiences (both good and bad) of people living with dementia, families and carers. It is a genuine invitation to shape the outcome of your project. Meaningful consultation thrives when those involved are positive and enthusiastic, are ready to listen with an open mind, people feel they can speak without judgement, when advocates know they have the genuine ability to influence a project and when there is demonstrated respect for advocates skill, knowledge, and abilities. 

Often people do not feel as though they are engaging in a meaningful consultation process when they are told things such as ‘it’s too late’ to make a suggestion, they are asked to approve a decision made by someone else, they do not feel the support of senior organisation leaders or something as simple as business acronyms being used but not explained. 

Well worth the work
Meaningful consultation may mean an organisation needs to work differently but it will be well worth it to those involved. Through meaningful consultation we can ensure people living with dementia can continue to participate within their own communities after diagnosis.  When we all know that a purposeful life can continue after diagnosis, the stigma of dementia can be lifted, and the discrimination faced by people impacted by dementia can be reduced. 

You can download Half the Story at dementiafriendly.org.au

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Professor Lily Xiao

College of Nursing and Health Sciences, Flinders University

In Australia, 37% of older people were born overseas; 18% of them speak a language other than English at home and 6% (or 245,000) do not speak English well or cannot speak it at all. [1] Moreover, older people, who speak English as a second language and live with dementia, will experience language reversion to their native language when they develop dementia. Informal carers from culturally and linguistically diverse (CALD) backgrounds play a crucial role in maintaining people with dementia from CALD backgrounds at home for as long as possible and relieving the disease burden on the health and social care system. However, they usually experience more difficulties in accessing and participating in dementia care education programs compared to their counterparts from the mainstream culture. Language barriers and cultural differences are main factors contributing to the disparities in dementia care.

The World Health Organization (WHO) iSupport program is a skill training program for informal carers of people with dementia. The program promotes best practice in home-based dementia care. It includes five learning modules: Introduction to dementia; Being a carer; Caring for me; Providing everyday care and; Dealing with changed behaviours. The program has been adapted to the Australian social context for carers from an English-speaking background. The Australian iSupport program includes a new learning module, ‘My engagement in consumer-directed care’, to meet carers’ learning needs in managing aged care services for their loved ones.

Engaging carers from CALD backgrounds in the iSupport program is an opportunity to address the existing dementia care disparities. Chinese Australians are the largest CALD group in the Australian population. This CALD group also holds a strong filial piety belief and views the care of older family members as their duty. Thus, home-based dementia care is more common in Chinese-Australian families than in the mainstream culture. Since 2021, we have been working with the Chinese-Australian community in the iSupport program through three strategic stages: 1) the cultural adaptation of the WHO iSupport program, 2) trialling the iSupport program and 3) embedding the iSupport program into community aged care services.

We received funding from the Australian Government via the National Foundation for Australia-China Relations to work with our partners in Greater China, where our Chinese migrants are from, in the iSupport program. The cross-national collaboration generated synergy in the translation, cultural adaptation, resource development and training of staff and facilitators. Three Australian Chinese-ethno-specific aged care organisations including Australian Nursing Home Foundation Limited (ANHF), Chinese Australian Services Society (CASS) and Chinese Welfare Services of SA Inc. (CWS) participated in the program. We gained great support from carers, frontline staff, and the organisations in the research. 

Recently, our team from Flinders University, ANHF, CASS and CWS won an ARIIA program grant to embed the iSupport program in the routine aged care services of those three industry partners. We expect that the technologies used in the iSupport program will improve the reach and representativeness of Chinese-Australian carers in the program and the impact of the iSupport program on the health and wellbeing of carers and those they care for. These technologies include web-based interactive learning activities with instant feedback for carers, and the use of audiobooks, e-books, and hardcopies to disseminate the iSupport program. We anticipate that our engagement with Chinese carers in the iSupport program will engage Australia’s diverse communities in developing multilingual versions of the iSupport program and make our dementia and aged care services more inclusive. 

The resources we developed via the Chinese iSupport program are freely accessible via these weblinks listed below. We welcome carers, dementia and aged care stakeholders to use and introduce these resources to Chinese carers of people with dementia.

Links to access the Chinese iSupport program resources:

1. Australian training and support manual for carers of people with dementia: Simplified Chinese (澳大利亚失智症照顾者培训和支持手册: 简体中文版)：https://researchnow-admin.flinders.edu.au/ws/portalfiles/portal/60428427/iSupport_handbook_Simplified_Chinese.pdf
2. Web-based Australian iSupport for Dementia program: simplified Chinese (澳大利亚失智症照顾者在线支持: 简体中文): http://43.135.6.171:8080/support_cns/
3. Australian training and support manual for carers of people with dementia: Traditional Chinese version(澳大利亞失智症照顧者培訓和支援手冊: 繁體中文版)：https://researchnow-admin.flinders.edu.au/ws/portalfiles/portal/60434110/iSupport_handbook_Traditional_Chinese.pdf
4. Web-based Australian iSupport  for Dementia program: Traditional Chinese(澳大利亞失智症照顧者在线支持: 繁體中文)：http://43.135.6.171:8080/support_cnt/

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.