Leveraging information technology to support caregiver medication management for the millions living with dementia

Newswise — INDIANAPOLIS — More than 21 million people provide unpaid care for millions of people with dementia in the United States. , a user-centric, evidence-based app to help dementia caregivers manage the medications (very often multiple medications for various conditions) of people who cannot do so independently.

In one of the first studies using app-based information technology to help caregivers manage the medications of people with dementia, and with the aim of sharing their research with others who are developing or adapting the technology to help caregivers, the Regenstrief, IU, Wisconsin and Purdue researchers have published their gold standard methodology regarding:

  • Remote assessment of the needs of caregivers managing the medications of people with dementia.
  • Co-design, including caregiver input, of a prototype app to support caregiver-assisted medication.
  • Feasibility test of the application prototype.

Among other innovations, the researchers added a virtual component to the background survey to learn what caregivers experience during the day when tackling medication management.

“We want to know what’s going on,” said the study’s corresponding author, Richard Holden, PhD, MS, human factors engineer, social cognitive psychologist and implementation scientist. “So we’re asking participants to record what they’re going through during the day in terms of medication management and send us something twice a day. It can be a photo, video, audio file, or written memo. It could be a picture of the large number of medications that need to be managed. It could be a video of a patient refusing to take medication. We analyze this contribution and it is an important element of our participatory co-design with the innovation of caregivers.

Medication management for people with dementia is often confusing, time-consuming, and difficult, especially if the cognitively impaired patient is resistant, belligerent, or both. Caregivers, many of whom have other responsibilities inside or outside the home, are typically undertrained, underfunded and undersupported in their role as medication managers. This can lead to significant caregiver burden, stress, and potentially life-threatening errors for the person with Alzheimer’s disease or related dementia.

“My family and I understand the daunting challenges of caring for someone with dementia. My mom and brother are my dad’s primary caregivers, and I’m a remote “telecaregiver.” We know caregivers need support,” Dr Holden said. “As the US population ages, the need for user-centric support for caregivers, like our Helping the Helpers app, becomes even more necessary. My colleagues and I present the methodology of our study in this article so that other researchers and developers have access to the framework of innovative methods that we have designed to produce technology that meets the needs of the intended end users – the real caregivers.

According to the Alzheimer’s Association, an estimated 6.5 million Americans aged 65 and over are living with Alzheimer’s dementia in 2022. This number is expected to increase to around 7.2 million in 2025 and is expected to rise to 13.8 million in 2060, unless the disease develops. any medical breakthrough to prevent, slow or cure Alzheimer’s disease.

“There are currently countless medication management apps that support a variety of tasks, but very few are developed and designed for caregivers with specific attention to caregiver needs,” said Noll Campbell, PharmD, MS, Regenstrief Institute and Purdue University College. of Pharmacy.

The article Helping the Helpers concludes: “Ultimately, if successful, our informatics (information technology) intervention should be usable and acceptable to a range of users across the United States, who could benefit immediately from IT without directly or indirectly incurring the costs associated with clinician intervention. – intensive treatments.

“Helping the Helpers – A research protocol for user-centered technology to aid caregiver management of drugs for people with Alzheimer’s disease and related dementias” is published in the peer-reviewed journal, Research in Social and Administrative Pharmacy.

In addition to Drs. Holden and Campbell, authors of the article are Nicole E. Werner, PhD, University of Wisconsin-Madison; Malaz Boustani, MD, MPH, Regenstrief and IU School of Medicine; and Aaron Ganci, MFA, Herron School of Art and Design at IUPUI. Dr. Werner will join the IUSPH-Bloomington faculty in August 2022.

The study was supported by the National Institute on Aging of the National Institutes of Health, grant 1R21AG072418.

About Richard Holden, PhD, MS

In addition to his role as a research scientist at the Regenstrief Institute, Richard J. Holden, PhD, MS, is the Distinguished Researcher to the Dean, Professor, and First Chair of the Department of Health and Wellness Design at the Indiana University School of Public Health-Bloomington, Professor of Medicine at IU School of Medicine and Chief Health Care Engineer for the Center for Health Innovation and Implementation Science.

About Noll Campbell, PharmD, MS

In addition to his role as a research scientist at the Regenstrief Institute, Noll Campbell, PharmD, MS, is an assistant professor of pharmaceutical practice at Purdue University College of Pharmacy and an adjunct assistant professor of medicine at the IU School of Medicine.

About the Regenstrief Institute

Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information enables people to end disease and achieve true health. A key research partner of Indiana University, Regenstrief and its researchers are responsible for a growing number of major healthcare innovations and studies. Examples range from developing global health information technology standards that enable the use and interoperability of electronic health records, to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the world.

Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible to everyone. His vision continues to guide the institute’s research mission.

About Indiana University-Bloomington School of Public Health

IU School of Public Health-Bloomington (SPH-B) is one of the largest public health schools in the United States, offering top-notch programs in a wide range of health-related fields. Accredited by the Council on Education for Public Health (CEPH), the school aims to promote health in individuals across Indiana, the nation, and the world through integrated multidisciplinary approaches to research and activities. creativity, teaching and community involvement.

About Purdue University College of Pharmacy

The mission of Purdue University College of Pharmacy is to advance scientific discovery and development, maximize global health outcomes through patient care and public service, and educate and train students so that they become leading pharmacists and scientists. The goal is to transform the practice and science of pharmacy to drive progress in human health.

About UI School of Medicine

IU School of Medicine is the largest medical school in the United States and is ranked among the top medical schools in the nation annually by US News & World Report. The school provides high-quality medical education, access to cutting-edge medical research, and rich campus life in nine Indiana cities, including rural and urban areas consistently recognized for their quality of life.

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