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

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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. This goal will be met through the following aims: 1) Define decision- making processes and key factors influencing decision-making about transitions in care through qualitative interviews with older adults with mild to moderate ADRD, caregivers, and dementia care providers to gain a detailed understanding of the complexities of dementia care decision-making and related preferences. 2) Develop a dementia care preference elicitation tool for use in assessing the preferences of older adults with ADRD and their caregivers through novel application of discreet choice methodology in conjunction with visualization methods and human-centered design to ensure that the tool is responsive to the needs of older adults with ADRD. 3) Use developed and validated preference elicitation tool to ascertain preferences for dementia care-related decisions among older adults with ADRD and caregivers. Over a two year period, investigate the consistency of preferences regarding transitions in care among older adults with ADRD. The proposed research forms the basis for investigating novel strategies to keep older adults with ADRD meaningfully involved in decision-making, even as their dementia worsens.