Dyadic Discrete Choice Experiments Enable Persons with Dementia and Informal Caregivers to Participate in Health Care Decision Making: A Mixed Methods Study

Abstract

Background: Discrete choice experiments (DCEs) may facilitate persons with dementia and informal caregivers to state care preferences. DCEs can be cognitively challenging for persons with dementia. Objective: This study aims to design a dementia friendly dyadic DCE that enables persons with dementia and informal caregivers to provide input individually and jointly, by testing the number of attributes and choice tasks persons with dementia can complete and providing insight in their DCE decision-making process. Methods: This study included three DCE rounds: 1) persons with dementia, 2) informal caregivers, and 3) persons with dementia and informal caregivers together. A flexible DCE design was employed, with increasing choice task complexity to explore cognitive limitations in decision-making. Summary statistics and bivariate comparisons were calculated. A qualitative think-aloud approach was used to gain insight in the DCE decision-making processes. Transcripts were analyzed using thematic analysis. Results: Fifteen person with dementia, 15 informal caregiver, and 14 dyadic DCEs were conducted. In the individual DCE, persons with dementia completed six choice tasks (median), and 80% could complete a choice task with least three attributes. In the dyadic DCE persons with dementia completed eight choice tasks (median) and could handle slightly more attributes. Qualitative results included themes of core components in DCE decision-making such as: understanding the choice task, attribute and level perception, option attractiveness evaluation, decision rule selection, and preference adaptation. Conclusion: Persons with dementia can use simple DCE designs. The dyadic DCE was promising for dyads to identify overlapping and discrepant care preferences while reaching consensus.

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment

“…Identifying joint preferences is important since decisions about care are often made by multiple individuals 35–37. Furthermore, the dyadic DCE round can pose as an opportunity for the person with dementia and their informal caregiver to have an in-depth conversation about their preferences and needs, which could lead to better mutual understanding 38. It is likely that preference adaptation will occur; however, as shown in previous research, this adaptation can be from both the person with dementia and the informal caregiver 38.…”

“…Furthermore, the dyadic DCE round can pose as an opportunity for the person with dementia and their informal caregiver to have an in-depth conversation about their preferences and needs, which could lead to better mutual understanding 38. It is likely that preference adaptation will occur; however, as shown in previous research, this adaptation can be from both the person with dementia and the informal caregiver 38. Informal caregivers were not primarily dominant in dyadic DCE rounds, in fact the informal caregivers were found to be helpful in assisting the person with dementia to complete more choice tasks 38.…”

“…An active role of the researcher administering the DCE choice tasks is needed to help guide the dialogue in the joint DCE rounds. People with dementia will be encouraged to state their preference and motivation first to minimise agency of informal caregivers 38…”

“…The complexity of a DCE can be challenging for persons with dementia 39–41. However, a recent study found that persons with moderate cognitive impairment can complete DCE choice tasks 38. Therefore, persons will not be excluded a priori based on their level of cognitive impairment.…”

“…First, illustrations will be used to visualise the choice sets and included attributes. Figure 2 provides an example of such an illustration 38. The illustrations are made by a graphic designer who has experience illustrating pictures for persons with cognitive impairments.…”