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Lidia Engel

Estimating the value of informal care provided to people with dementia in Australia

Portrait of Dr Lidia Engel
  • Award

    Dementia Australia Research Foundation – Victoria Project Grant

  • Status

    Completed

  • Start Date

    1 March 2019

About the project

While informal carers spend a significant amount of time on caregiving, the time costs of informal care are often neglected in health policy decisions, including funding decisions. Traditionally, informal care hours have been valued using the opportunity cost method (i.e., values informal care by forgone wages) or the replacement cost method (i.e., values informal care at the price of the market substitute). The aim of this study was to use discrete choice experiment (DCE) to estimate the value of informal care provided to people with dementia in Australia. 

To identify the attributes and attribute levels, a literature review of qualitative studies was undertaken, exploring carers’ positive and negative experiences. Themes identified in the review were further tested for importance and wording in qualitative interviews with carers of people living with dementia. Following two rounds of consultation with an advisory group, the final list of DCE attributes was developed that describe four experiences (i.e., emotional and physical health impacts, relationship with the person receiving care, social and practical support, and doing enjoyable activities), in addition to the attributes ‘hours of care provided’ and the ‘monetary compensation from the government’. 

Based on results from an online survey that was administered to 700 people, including carers of people with dementia, our findings suggest that respondents were willing to accept a minimum of $21 to provide an additional hour of informal care to a person living with dementia. This cost estimate can inform future economic evaluations and cost-of-illness studies where informal care costs are included.

Publications and presentations resulting from award

Engel L, Adjukovic M, Bucholc J, McCaffrey N (2021): Valuation of informal care provided to people living with dementia: a systematic literature review. Value in Health, 24(12): 1863-1870, doi: 10.1016/j.jval.2021.04.1283.

Asfia SKM, Bucholc J, McCaffrey N, Mihalopoulos C, Muldowney A, Engel L (2022). Understanding the quality of life impacts of providing informal care to people with dementia: a systematic review of qualitative studies. Journal of Alzheimer’s Disease, 88(4):1293-1309. doi: 10.3233/JAD-220219

Engel L, Loxton A, Bucholc J, Muldowney A, Mihalopoulos C, McCaffrey N (2022). Providing informal care to a person living with dementia: the experiences of informal carers in Australia. Archives of Gerontology and Geriatrics, doi: 10.1016/j.archger.2022.104742.

Where are they now?

At the time of award, Dr Engel was a Research Fellow at Deakin Health Economics, based at the Institute for Health Transformation, Deakin University.

Dr Engel now works at Monash University in the School of Public Health and Preventive Medicine

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Last updated
6 December 2023