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2018 Conference Presentation

Dementia EnglandUnited Kingdom

11 September 2018

Estimating the costs of unpaid care for people with dementia: the importance of how questions are asked

Adelina Comas-Herrera, London School of Economics and Political Science (LSE), United Kingdom

Amritpal Rehill PSSRU, London School of Economics and Political science
Klara Lorenz PSSRU, London School of Economics and Political science
Derek King PSSRU, London School of Economics and Political science


Methods: In the MODEM cohort, we asked carers of 300 people with dementia who provided unpaid care to report on how many hours of care they (and others) provided, using different types of question, mirroring how the questions are typically asked in economic evaluations, and also in the Resource Use in Dementia study instrument. In particular we used:

1. The amended RUD collecting detailed information on time unpaid carers spend on specific care tasks falling under the realm of ADL and IADL tasks and supervision.

2. We also asked carers as part of the CSRI how many hours they spend caring on a typical day.

3. Finally we asked carers how long they were able to leave the care recipient alone.

We estimated both how many hours of care the care recipient receives (total time), and how many how many hours of care is provided by a particular does the unpaid carer.

Results*: The comparison of hours between measures one and two showed quite a large difference with carers declaring more hours when asked about how much time they spend caring than through the very detailed RUD approach.

Conclusions: The method of asking about the hours of care provided by unpaid carers makes a substantial difference to the estimates obtained. This is particularly important when the costs are estimated for economic evaluations, as different estimation methods could lead to different cost-effectiveness conclusions.

*Details on the estimated costs of dementia care are embargoed until the Alzheimer’s Society Annual Conference held on 22 May 2018, and thus are not shown in this abstract. But they will be included in a later version of the abstract after that event.

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