Person-reported outcome measures (such as quality of life measures or quality of care questionnaires) are vital tools used to ensure the experiences of those in the health and aged care sectors are known and understood, and so that improvements to care can be made. Despite more than half of all residents in aged care experiencing cognitive decline, the majority of tools designed for large-scale collection of quality of care data has not been designed with their particular needs in mind.
Additionally, as a health economist with a passion for working in aged care, I was concerned that a lot of specialist tools used for measuring outcomes had been designed with a ‘top-down’ approach that did not include the voices of people living with dementia. Typically, there has been little focus on making such tools more accessible to people with diverse communication needs. This is why I was so excited to receive a 2023 AAG Research Trust Strategic Innovation Program grant to focus on developing novel approaches to adapt these tools to be more accessible in order to include a greater proportion of the voices of older people with cognitive impairment and dementia in the assessment process.
To date, we have learnt a lot about how to effectively and appropriately co-design with older adults in residential aged care. Though we already had some examples of processes used to develop adapted or communication-accessible versions of quality-of-life questionnaires, such as those developed with people living with aphasia or adults with intellectual disability, these often included co-design process such as large workshops or focus groups with multiple stakeholders in the room, and less with people living in residential aged care. Our aim was to focus on including those living with dementia or cognitive impairment, as they are often excluded or more difficult to recruit to such studies.
We have found that it is possible to do this co-design work, but it takes the researchers working flexibly with an adapted approach. As much as we wish it didn’t, ageism and bias against people living with dementia is wide-spread in our community. When asking participants to take part in ‘deep’ work, something that a lot of them had not been asked to do for many years, we found it took some time for them to adapt to this type of activity, and to convince them that their contributions were meaningful and so valuable to us.
To our delight, we found that even those participants who were initially unsure of their ability to contribute increased in confidence over the course of the co-design process. The work funded from this grant, with its focus on fast-tracking implementation of innovation directly into practice to improve the lives of older people, has been a key component in demonstrating the feasibility of this approach, and we are excited to continue our program of work funded by an ARC Industry Fellowship.