Kaele Stokes, Executive Director, Advocacy and Research
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.