Rethinking participation in aged care reform for people living with dementia

Drawing on her background in law and socio-legal dementia research, Kristina highlighted a longstanding gap in aged care reform. While people with dementia are frequently discussed, they are rarely consulted directly about decisions that affect their lives. 

"People with dementia themselves belong in aged care systems change," she said. 

Kristina’s research examines how people living with dementia in residential aged care homes can participate meaningfully in aged care improvement and governance.  

Her work found that residents with dementia have often been excluded from policy consultations, with their perspectives commonly filtered through family members, carers or other representatives. 

This exclusion is particularly significant given that around half to 50-70% of people living in residential aged care have dementia. 

Kristina outlined a range of barriers that limit participation, including assumptions about a person's capacity to contribute, misunderstandings around application of legal requirements for informed consent, and organisational processes that rely heavily on verbal and written communication.  

“These barriers can result in "epistemic injustice", where people's knowledge and experiences are discounted or overlooked,” she said. 

A key focus of her current Dementia Australia Research Foundation Postdoctoral Fellowship is exploring how consumer advisory bodies can better support the participation of residents living with dementia.  

Working in partnership with Uniting NSW.ACT, Kristina is investigating ways to make governance processes more inclusive through communication supports, creative engagement methods and alternative approaches to consultation. 

These barriers can result in "epistemic injustice", where people's knowledge and experiences are discounted or overlooked.

Her research aligns with reforms under Australia's new Aged Care Act, which places greater emphasis on rights, participation, dignity and supported decision-making. 

“Consumer advisory bodies move beyond consultation towards governance by creating a formal pathway for residents to organisational leadership,” Kristina explained, adding that legislation requires providers to establish and support their operation and ensure they are representative of residents. 

Kristina is calling for more inclusive models of governance, greater transparency in resident feedback and innovative approaches that move beyond traditional language-based consultation.  

By creating opportunities for people with dementia to share their experiences directly, aged care providers can build systems that are more representative, responsive and equitable for all residents. 

“Perhaps people with dementia are not that difficult to hear after all. It just requires time and building relationships. The challenge is not simply helping people with dementia fit into existing systems, but to recognise different ways of knowing, communicating and participating. Not everything can be reduced to a feedback form.” 

In the Q&A session following the seminar, the group discussed the importance of developing different skills to be able to listen or hear differently from people who may not be able to communicate verbally due to dementia. 

Perhaps people with dementia are not that difficult to hear after all. It just requires time and building relationships.

For example, a more inclusive approach would be to support communication through art therapy or alternative forms of expression that allow people to use different parts of their bodies to convey their thoughts. 

The group flagged the importance of then having the appropriate people trained to read/hear/listen to these other ways of communicating. 

What’s next?