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RESEARCH

AIHS partners with academic centers from across the country to conduct community-based research related to older adults and family caregivers. If you have any questions about the projects below, contact Denise Hughes, Health Educator for the AIHS Family Caregiver Center.

Denise Hughes

Email: dhughes@agingihs.org

Phone: 260-600-0844

Active Research Projects

 

Negotiation & Dispute Resolution Training to Optimize Caregiver Communication in Alzheimer's Disease/Cognitive Loss

Northwestern Feinberg School of Medicine funded project

Partnership with Northwestern University

Principal Investigator: Lee A. Lindquist, Chief of Geriatrics, Northwestern University Feinberg School of Medicine

Background: Alzheimer’s disease (AD) affects more than 5 million older adults nationally, with the prevalence expected to increase as our population ages. An integral driver in the care of older adults with AD is the family caregiver. Family caregivers frequently facilitate, oversee, or provide direct care to their loved ones with AD. As a result, family caregivers experience significant amounts of burden, stress, and negative health issues as they have to navigate the care of their loved one. Our prior research has shown that family caregivers act as “helicopter advocates” or patient navigators for their loves ones with AD, often interacting with the health system for a multitude of conflicts (e.g. determining if a test/medication/hospitalization is necessary, responding to insurance denials, billing errors, home health extensions, scheduling issues).  A reoccurring theme is that family caregivers experience frustration, anxiety, and stress as they deal with these health system conflicts. Whether it is spending hours on the phone trying to get answers from a health care provider’s team or navigating complex insurance hoops, these conflicts contribute to the burden experienced by a family caregiver. Unfortunately, family caregivers are vastly underprepared to effectively negotiate through these conflicts and resolve the disputes.

We hypothesize that teaching negotiation and dispute resolution tactics to family caregivers of patients with AD and cognitive loss will help improve communication, caregiver stress, burden, anxiety, and empowerment.

Aim 1: Employ a caregiver (user)-centered design approach to modify and tailor a negotiations and dispute resolution (NDR) training intervention to support communication skills of family caregivers of adults with AD.

 

Aim 2: Utilizing Multiphase Optimization Strategy (MOST), conduct a randomized pilot trial of the NDR intervention that targets better communication between caregivers and health teams, using a 2X3 full factorial design, to (2a) determine the feasibility of delivering the intervention, and (2b) derive estimates of the effect of 3 intervention components on changes in patient-centered outcomes at post-intervention and follow-up to inform a future R01 trial.

 

ABC Community: Enhanced Support for Informal Caregivers of A&D Waiver Participants with Dementia

Indiana University School of Medicine

Principal Investigator: Steven R. Counsell, MD

Background: To sustain and expand the Aging Brain Care (ABC) Community program to strengthen support for caregivers of individuals with dementia and maximize the ability of people living within dementia to remain in community settings.

Aim 1: To sustain and expand ABC Community in partnership with AAAs following successful completion of the ACL IU grant.

 

Aim 2: To ensure delivery and sustainability of the ABC Community program.
 

Aim 3: Provide progress reports and final report to Indiana FSSA.

 

Collaborative Goal Setting for Diabetes
The University of Iowa, College of Nursing funded pilot project
Partnership with UI College of Nursing

Background: Patient self-management plays an important role in preventing adverse clinical outcomes from diabetes. Because goal setting with, and follow-up support from, health care providers increases patients’ self-efficacy and motivation toward developing and maintaining self-management behaviors4-6, collaborative goal setting (CGS) is a key element of diabetes self-management education curricula1 and chronic illness care quality measures. However, while education and ongoing support for patients with diabetes usually occurs during primary care visits, research has yet to establish whether there is any benefit to having primary care providers (PCPs) involved in the CGS process.

Aim 1: Determine the feasibility of PCP reinforcement in the CGS process.

Aim 2: Obtain data to estimate effects of PCP reinforcement on outcomes of patients receiving CGS intervention and determine sample size for a future study. Using an experimental trial with repeated measures with up to 100 patients with diabetes, this study will determine whether the effectiveness of the model most commonly adopted for delivering CGS (i.e., nurse care coordinators via a call center) is improved when PCPs reinforce patients’ health goals. Data analysis will rely on descriptive analyses and linear mixed modeling for repeated measures. Results of this study will be used to inform translational efforts and resource allocation in primary care settings regarding how to integrate CGS into the care they provide patients with diabetes.

Completed Research Projects

 

Advance Planning for Home Services for Seniors
Patient Centered Outcomes Research Institute (PCORI) funded Study.
Partnership with Northwestern University

Principal Investigator: Lee A. Lindquist, Chief of Geriatrics, Northwestern University Feinberg School of Medicine

Background: Remaining in their own home is one of the highest priorities of most seniors. Seniors often do not have an understanding of home care services. Likewise, seniors do not understand their health trajectory or plan accurately for future needs, which lead to them not remaining safely in their homes as long as they could. Seniors rarely believe that they will be hospitalized, although people aged 65 years account for 35% of hospitalizations annually. As a result of hospitalizations, seniors experience functional decline with placement in nursing homes. Seniors are often left out of critical decision making on their long-term care. Stressed family members choose nursing facilities while the senior is hospitalized and, in many cases, make decisions to move seniors out of their homes. If seniors and their families understand home care services and plan for health events (e.g., hospitalizations, functional loss), then seniors could potentially remain safely in their homes longer. The goal of this proposal is to develop and test an advance planning tool to help seniors understand projected health needs and plan ways to remain in their own homes when these crises occur.

Aim 1: Develop, pilot test, and refine an Advanced Planning for Home Services (APHS) Tool to assist seniors in making informed choices about issues in their health trajectory that influence their ability to remain in their own home.

Aim 2: Conduct a randomized controlled trial of the APHS Tool intervention to determine subject understanding of home care services and health trajectory and other patient-centered outcomes.

Aim 3: Disseminate the APHS Tool nationally through senior focused organizations (Home Care Association of America, Village to Village Network).

PCORI Project: Dissemination and Implementation

Patient Centered Outcomes Research Institute (PCORI) funded Study.
Partnership with Northwestern University

Principal Investigator: Lee A. Lindquist, Chief of Geriatrics, Northwestern University Feinberg School of Medicine

Background: A common fear among seniors is removal from their homes and placement in long term care institutions. As our population matures, aging-in-place is no longer a simple outcome of being present in a home. Instead, seniors have to be safe, handle their needs, or access services that can fulfill their needs. Unfortunately, seniors and their families often do not have an understanding of home care services. Likewise, seniors do not understand their health trajectory or plan accurately for future needs, which leads to them not remaining safely in their homes as long as they could. To facilitate seniors planning for their future home needs, our team of researchers, seniors, caregivers, social workers, area agency on aging leaders and home care agency leaders, joined together to create the planning tool, PlanYourLifespan.org. 

Aim 1: Develop and utilize a lay language PYL train-the-trainer/patient partner-stakeholder (TTPS) toolkit to leverage patient partner/stakeholder engagement for PYL implementation

Aim 2: Conduct a Usage and Attitudes Trial (UAT) of the TTPS toolkit among new patient partners/stakeholders on implementation of PYL in their communities

Recruiting Older Adults into Research (ROAR) Project

National Institute on Aging (NIA)

Principal Investigator: Amy Wiatr-Rodriguez, Administration for Community Living

Background: Insufficient participant recruitment for research can delay or cause research study cancellation, a substantial waste of resources. The need for Alzheimer’s clinical research study participants is urgent: tens of thousands of volunteers are needed for research studies focused on delaying, treating or preventing this growing public health problem.

Aim 1: To raise awareness and engagement about research participation among older adults.

Preservation of mobility in rural older adults through exercise (the PROMOTE study)
National Institute on Aging (NIA):
Partnership with Tufts University, Boston

5 year randomized control trial to translate an evidence-based exercise intervention that has been shown to improve mobility in older adults with chronic conditions.

Collaborative Goal Setting for Diabetes
National Nursing Research Institute (NINR):
Partnership with University of Iowa, College of Nursing

Andrea Wallace, University of Iowa College of Nursing

5 year randomized control trial builds on the work of the pilot study listed above.

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