Lidia Engel

Providing informal care to a person living with dementia is not only associated with significant costs but there can also be significant quality of life impacts for informal carers. However, these impacts are rarely considered when assessing the cost-effectiveness of dementia interventions, leading potentially to sub-optimal resource allocation decisions. The aim of the COCOON research project is to advance the methods used when assessing the cost-effectiveness of dementia interventions by incorporating carer outcomes. 

In this Fellowship, I will develop, with input from an advisory group, a new dementia-specific questionnaire to measure quality of life of informal carers, which will be tested for its appropriateness and performance in informal carers. I will then develop a way of scoring this new questionnaire that will account for the fact that some domains of quality of life are valued more than others. In the final part of the Fellowship, I will assess how carers’ quality of life can be combined with care recipients’ quality of life, by obtaining preferences from the Australian general population in terms of whether they should be weighted differently. Findings from this research project will enable the inclusion of carer outcomes in future cost-effectiveness analyses, leading to more equitable and efficient resource allocation decisions.