Dementia Australia's 'Half the Story' helps professionals have effective consultation with people living with dementia, their families and carers

This quote from Half the Story highlights the need to - and complexity of - understanding how to communicate with people living with dementia, their families and carers. And more importantly, how applying assumptions, bias or a one-size-fits-all approach to any project, particularly when people with the disease have some association with it, can fail.

Published by Dementia Australia and co-authored by people impacted by the disease, the document includes tips and strategies about how to have useful chats with such people, so the whole story is captured and understood, and better project outcomes can be achieved. This might be in the context of reviewing existing programs; end user or accessibility testing; setting strategic goals, aims or plans; scoping, feasibility or needs analyses; and wanting to understand the lived experience.

According to the document, the benefits people on the front line - and validating the statements and making decisions based on them - can bring to any project, include:

Another quote from a person living with dementia, published in the document, drives home what can happen when feedback isn't taken on board.

"It is imperative that the authentic voices of people with dementia and care partners of people with dementia are heard and valued, and that our feedback is acted upon. So far, in my experience, very little has ever been acted upon. And when I dare to have a different opinion, I am no longer invited to the table."

Eileen Taylor lives with dementia and Dubhg Taylor is her care partner. They both contributed to the project. Eileen said organisations need to be aware of, and proactively promote the concept of giving people living with dementia a voice that is heard and listened to.

"People living with dementia and their care partners want more than half the story told, they want the whole story told and understood," she said.

"By gaining a sound appreciation and understanding of the world of a person living with dementia organisations can help tear down barriers and myths and create dementia-friendly awareness which will benefit not just those living with dementia but the entire community."

Dubhg said meaningful conversation means a person is able to actively contribute to decisions and directions, including acting as the honorary chair, being on committees, speaking at meetings or with the media, or simply attending a support group meeting.

"Meaningful consultation must be a person-centred approach encouraging and inviting people living with dementia to purposefully participate in the work of an organisation to which they belong," Dubgh said.

"It is inclusively contributing to mindsets, skills, and abilities, while accepting that individual participation may vary, depending on abilities, personal histories, and available opportunities."

Among the tips, particularly for consultation facilitators, are:

Putting their money where their mouth is, Dementia Australia has people living with dementia advocating and involved with the not-for-profit charity.

Chief operating officer Anthony Boffa said the publication will support organisations to set up their consultation process, refine their approach and increase their participation and engagement.

"This is a go-to resource for community groups, service providers, businesses and any other organisation who are delivering or developing a product or service which will impact the lives of people living with dementia, their families and carers," he said.

"Meaningful consultation may mean that you need to work differently, but it is well worth it and Half the Story is designed to help you every step of the way.

"This recognises that people living with dementia can continue to participate meaningfully within their communities after diagnosis.

"Once people realise that a purposeful life can continue after diagnosis, the stigma will be lifted and the discrimination reduced."

Half the Story is available now for free download at dementiafriendly.org.au