Go-to resource for meaningful consultation with people impacted by dementia

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Dementia Australia has today released Half the Story, a 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.

Eileen and Dubhg Taylor, Dementia Australia Dementia Advocates, contributed to Half the Story which Eileen said is an important guide for organisations as they 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,” said Eileen, who is living with dementia.

“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 Taylor, who is Eileen’s care partner, said meaningful consultation should not be tokenistic and means a person is able to actively contribute to decisions and directions.

“This can include acting as the honorary chair, being on any committees, speaking at meetings, or with the media, or simply attending a support group meeting,” Dubhg said.

"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.

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

People living with dementia are advocating and involved with Dementia Australia in many ways. They provide strategic advice on shaping dementia services, programs and policy development and are involved with campaign concepts, content and promotion. They are involved in research projects in the decision-making phases not just as participants. They have even been consultants on major film and television projects.

Dementia Australia Chief Operating Officer Anthony Boffa said Half the Story 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,” Mr Boffa 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

Dementia Australia is the source of trusted information, education and services for the estimated half a million Australians living with dementia, and the almost 1.6 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you.

For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au



Media contacts: Andrea Hogan, Media & Communications Advisor - 0482 167 924 – Andrea.Hogan@dementia.org.au, Gabrielle Prabhu, Media & Communications Manager - 0447 253 583 – Gabrielle.Prabhu@dementia.org.au  

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.