Function, caregiving and adequacy of support before and after the transition to institutional settings

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PROJECT SUMMARY/ABSTRACT When functional impairments in later life overwhelm available caregiving, older persons and their caregivers commonly consider if moving from home into an institution, such as a nursing home, assisted living facility or residential care facility for the elderly, is best for them. Persons and caregivers hope clinicians will help them decide, but evidence and frameworks that clinicians can use to provide guidance are largely absent. We could improve how clinicians help patients and caregivers navigate this process through a decision aid, but an aid first requires data on how person- and caregiver-centered measures change with institutionalization and a better understanding of what information persons and caregivers want. The objective of this proposal is to supply those data and that understanding through mixed methods. Aim 1 will produce the first nationally representative descriptions of trajectories in function, caregiving, and adequacy of support (eg, did persons bathe less than they wanted due to lack of help) in the year before and after institutionalization and examine if trajectories meaningfully differ in pre-specified subgroups (eg, by age, race, or type of institution). Aim 2 will explore the experience of recently institutionalized older persons and their caregivers to understand the role of function, caregiving and inadequate support in their transition and what information (if any) was and would have been useful. We integrate our methods by using results from Aim 1 to inform sampling and by presenting findings from Aim 1 to interviewees in Aim 2; by exploring feedback to a concrete example, we will gain a better understanding of what kinds of information are useful to persons navigating this transition. Together, these aims will be the foundation for future work developing decision aids for the institutionalization process and then implementing and evaluating them in randomized controlled trials.