Donovan T. Maust

Patient, Caregiver, and Regional Drivers of Potentially Inappropriate Medical Care for Dementia: Building the Foundation for State Dementia Policy

Research Project Description
Donovan T. Maust, Hyungjin Myra Kim, Kenneth M. Langa, Kara Zivin, Helen C. Kales

In 2010, an estimated 4.7 million Americans had Alzheimer's disease - a number projected to nearly triple by 2050. While the National Plan to Address Alzheimer's Disease and Related Dementias is an effort to coordinate federal, state, and local efforts to confront this growing challenge, individual states are left to determine how to best care for these patients and their caregivers. Given changes in cognition and function with the progression of age-related dementia, the needs of these patients and their caregivers extend far beyond healthcare, requiring a diverse response from states. However, the care most accessible to community-dwelling patients with age-related dementia is direct medical care. In addition, as a patient's ability to direct their own care declines, the healthcare provided to them may be driven by the needs and preferences of the caregiver. These patients then experience: fragmented medical care, poorly-coordinated across multiple outpatient providers; potentially preventable hospitalization; and overuse of antipsychotics despite extensive evidence of harms.

Given the state-led nature of the National Plan, it is critical to provide states with key predictors of this inappropriate care to help guide their policy. We will use national Medicare data, a national survey of older adults with dementia and their caregivers, and an Expert Panel of researchers and state policy experts to complete the following aims: (1) Identify patient and community factors associated with potentially inappropriate care delivered to community-dwelling adults with age-related dementia and establish accurate national and state-level estimates of this care, including potentially preventable hospitalization; fragmented outpatient care; and antipsychotic use. (2) Determine the contribution of additional patient clinical, functional, caregiver, and caregiving characteristics to potentially inappropriate care relative to the effect of location. (3) Develop an evidence-based policy making guide for dementia care that we will use to interview state aging policy officials.

An Expert Panel of dementia researchers and state aging policy experts will apply our Aim 1 and Aim 2 findings to develop an evidence-based policymaking framework with particular emphasis on populations most at risk, which we will use to guide interviews with state aging policy officials. The impact of our work will be to: 1) identify the patient, caregiver, and regional factors that contribute to potentially inappropriate medical care for patients with age-related dementia; 2) provide a baseline against which to measure future system-level interventions; and 3) develop a framework for states to develop evidence-based dementia care state plans.

National Institute on Aging
(1 R01 AG 056407 01 A1)

Funding Period: 4/1/2018 to 1/31/2022