Person-centered decision making: Developing a choice-based preference tool for transitions in dementia care

PROJECT SUMMARY Sound decision-making about care during cognitive decline is a critical issue for the 5.8 million adults with Alzheimer’s Disease and Related Dementias (ADRD) in the United States. Older adults (65 years and older) with ADRD often are excluded from care decisions as their dementia worsens. Little is known about the decision-making processes of older adults with ADRD concerning transitions from home-based care to long term dementia care (e.g. nursing homes, assisted living, and memory care units), or how to best incorporate older adults with ADRD in the decision-making process. The goal of this research is to advance our understanding of decision-making processes, and the preferences that influence decision-making, for older adults with ADRD and their caregivers. Through the Decision Making in Alzheimer’s Research (DMAR) study we have (1) gained a detailed understanding of the complexities of dementia care decision-making and related preferences through qualitative interviews with older adults with mild to moderate ADRD, caregivers, and dementia care providers; (2) developed a dementia care preference elicitation tool for use in assessing the preferences of older adults with ADRD and their caregivers through novel application of discrete choice experiment (DCE) methodology in conjunction with visualization methods to ensure that the tool is responsive to the needs of older adults with ADRD; (3) used the developed preference elicitation tool to ascertain preferences for dementia care-related decisions among older adults with ADRD and caregivers. This administrative supplement will provide funds to cover the unforeseen costs of conducting the analysis for DCE data collected using our innovative study design. We will investigate the impact of the level of dementia on the preferences of older adults with dementia and the consistency of those preferences over time. The goal of this proposed research is to investigate novel strategies for keeping older adults with ADRD meaningfully involved in decision-making, even as their dementia worsens.