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2022 Advancing Research on Care and Outcome Measurements (ARCOM)

An Emergency Plan Toolkit to Change Outcomes for Caregivers and Persons Living with Dementia

How can dementia caregivers who undergo medical emergencies protect the health of their care recipients?

Rebecca Boxer, M.D.
Kaiser Foundation Health Plan of Colorado
Aurora, CO - United States


Studies show that caregivers of people living with dementia often don’t take care of their own health. For example, caregivers may delay medical attention to avoid leaving their care recipient alone. Such delays can lead to hospitalization of the caregiver, and an extended absence from the person with dementia. Hospitalized caregivers, moreover, often lack a viable plan for offering substitute care to their loved one, which can worsen the care recipient’s health and lead to further medical events. Taken together, these findings highlight the need for a tool to help dementia caregivers implement an alternate care plan in case of an emergency. 

Research Plan

Dr. Rebecca S. Boxer and colleagues will use this grant to develop such a tool - the Emergency Plan Toolkit. Specifically, the toolkit will offer caregivers a method for (1) identifying other people who can care for their loved one in case of an emergency and (2) letting those alternate caregivers know how to offer care, if necessary. 

The first draft of the toolkit will be developed and refined using surveys and interviews with caregivers, people with dementia and other stakeholders. The investigators will then test their prospective tool with 600 caregiving partnerships (each of which has a caregiver and care recipient). Four hundred of the partnerships will receive the toolkit and 200 will not. Dr. Boxer’s team will assess whether, over a six month period, partnerships that received the therapy saw fewer hospitalizations of the person with dementia than did partnerships without therapy.


If successful, the Emergency Plan Toolkit could receive more thorough testing in larger clinical trials. Such work could lead to a cost-effective method for improving dementia care and preventing health emergencies for people with dementia. 

The ARCOM Grant Program was developed jointly with Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living With Alzheimer’s and Dementia (LINC-AD).

For more information on LINC-AD please visit: https://alz.org/linc-ad

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