Sharing the load: co-creating communication tools for people with dementia

These same challenges extend to family, friends and others, who often don’t know how to best communicate with their loved one.

Communication partner training (CPT) has been shown to improve communication between people living with dementia and those who care for them. But, despite their potential for impact, there are few interactive online programs available for speech pathologists that have been co-created with people with dementia and their families. 

At UTS, speech pathology PhD student Naomi Folder was determined to fill this gap. Supported by funding from a UTS Social Impact Grant, she set out to create a CPT program in collaboration with people living with dementia and their families, speech pathologists and service providers.  

Capturing the power of lived experience  

The result is a prototype of an online CPT intervention that reflects the real-life experiences of people with dementia. The program is an adaptation of Convers-ABI-lity, part of the Social Brain Toolkit, a suite of free, online communication training tools for people with acquired brain injury that was developed by Naomi’s PhD supervisors. Modifying an existing communication program can fast-track support for people living with dementia rather than starting from scratch.  

Naomi’s prototype addresses the key limitations of current CPT interventions, which are often inaccessible to large segments of the dementia population.  

Most lack manuals or resources to support implementation. Additionally, no online programs that allow learners to complete video based interactive tasks are available, limiting access across regional and rural areas. – Naomi Folder

What’s more, few programs are created in partnership with consumers, which means they often neglect the lived experience of dementia. This lack of input from people with lived experience may also contribute to negative stereotypes or inaccurate representations of dementia.

The prototype was developed by a project team comprised of people living with dementia, their communication partners, and speech pathologists with expertise supporting people living with dementia.  

Importantly, stakeholders were paid for their contributions to the research – something that isn’t always offered for lived experience expertise.   

We were able to reimburse people for their time at the health consumers reimbursement rates, which was especially beneficial to support people to attend, but also to show appreciation for their time and expertise. – Naomi Folder

Harnessing the power of lived experience  

Insights were gathered from interviews with people living with dementia and their communication partners, as well as from a survey of speech pathologists. Questions were designed to capture participants’ experiences of communication and dementia, engagement with previous CPT, and what they’d like to see in a future CPT program.  

Next, these same participants took part in a series of workshops to explore the Convers-ABI-lity program and discuss how it could be modified for a dementia-focused audience. The co-design element of the work meant that stakeholders’ input was intrinsic to the success of the new training program. 

During the workshops, stakeholders were supported to engage and meaningfully contribute to all discussions. Their decisions directly impacted the outcomes of the program. – Naomi Folder  

While the co-design process was primarily about tapping into the lived experiences of people living with dementia and their families, it also became an opportunity for stakeholders to learn from one another’s experiences.  

Even during the process of creating the program, our participants were learning about communication and taking on strategies for their own conversations. – Naomi Folder.  

‘It demonstrates that the project is already delivering training and support to people living with dementia and their communication partners.

Towards better communication outcomes  

For Naomi, producing the prototype intervention is just one of many achievements that arose from this work. Building strong partnerships across the dementia care space, including with the GPs, researchers, speech pathologists and aged care representatives who sat on the project advisory committee, as well as with the Dementia Australia Consumer Engagement Team, was instrumental to the project’s success. 

The work is now ongoing – Naomi and her research team are continuing to analyse the data from the interviews and workshops; further research is required transform the prototype into an online, self-guided CPT program. 

But even now, the outcomes have surpassed what many project stakeholders had envisioned. 

‘At the beginning, I wondered if it was actually going to be possible,’ says one contributor. ‘The evidence of your understanding of dementia knowledge comes through in what you’ve presented.’