Rachel Milte and Julie Ratcliffe wrote this piece for Community Care Review magazine’s summer 2019/20 edition.
People with dementia are traditionally excluded from health economics research. Rachel Milte and Julie Ratcliffe are using new methodologies to ensure their voices can inform providers and policy makers.
The Royal Commission into Aged Care Quality and Safety provides us all with an opportunity to consider how we can work together to improve aged care services to meet the needs of the growing proportion of our population who will utilise these now and into the future.
We are currently living in the midst of an ‘information age’ where data increasingly is being used to drive service development, provision and evaluation.
As health economists with a special focus in aged care, we have a passion for working closely with aged care consumers, providers and policymakers to understand routinely collected data and for collecting new data that will allow us to undertake meaningful and impactful policy relevant research.
As part of our work program we are trialling new and innovative ways to work in close partnership with aged care consumers, including those with mild to moderate dementia and cognitive impairment traditionally excluded from health economics research, to improve the quality and efficiency of our aged care system.
Discrete choice experiments
One promising methodological approach that we have developed and applied in this context is Discrete Choice Experiments (or DCEs).
DCE studies have been widely applied by health economists to assess patient preferences in health system settings. However our team is one of the first in Australia and internationally to use these methods with aged care consumers.
DCEs work by using experimental designs to ask participants to make stated (imaginary or hypothetical) choices between alternatives.
Whilst the design is experimental the choices themselves are based on real life situations that people are likely to encounter in their every day lives.
For example, older people may be asked to choose between alternative home care packages, involving alternative services and supports (very much similar to the actual choices they are now facing in the era of consumer directed care) and asked to indicate their preferences.
There are no right or wrong answers to DCE questions, older people may legitimately have different preferences about the types of services and supports they would like to receive under their home care package to meet their needs.
By asking participants to make choices between a number of alternatives, we can better understand their preferences and identify those services and supports which are most highly valued.
This information can then be coupled with data relating to costs to assess the cost effectiveness of alternative home care packages, where effectiveness is defined according to the values of older people themselves.
One recent study we have undertaken in a residential care setting (“Assessing quality of care in nursing homes using discrete choice experiments: How does the level of cognitive functioning impact upon older people’s preferences?” published in Social Science and Medicine using a face to face interview with participant feedback, evaluated whether aged care residents with mild to moderate dementia or cognitive impairment were able to make a series of choices between two residential aged
The providers were differentiated by six key characteristics – the level of time care staff spent with residents, homeliness of shared spaces, homeliness of room set up, access to outside and gardens, the frequency of meaningful activities, and flexibility with care routines.
We found that our sample of participants with cognitive impairment understood the task and were able to make meaningful choices between the two providers in a similar manner to our sample of participants without cognitive impairment.
In a second recent study (‘How do people with dementia and family carers value dementia-specific quality of life states? An explorative “Think Aloud” study’), published in the Australasian Journal on Ageing, we worked together with people with a diagnosis of dementia and their family members, researchers at the University of Queensland and Helping Hand Aged Care.
Our participants were asked to take part in a DCE asking them to choose between alternative dementia specific quality of life states. We used an explorative think aloud approach where participants were asked to verbalise what they were thinking when making their choices about which state they would prefer to live in.
We found that people with dementia and their family members were very engaged with these tasks -with most managing to complete all of the questions in our study and provide justifications which aligned with their preferences.
Data of this type is essential to help health economists to ensure that assessment of the costs and benefits of dementia care services and supports is undertaken with quality of life as the central measure of benefit.
More importantly it helps us to ensure that this is assessed from the perspective of those that matter, consumers contributing their rich and varied ‘lived experiences’ to shape and inform dementia care, policy and practice.