Take advantage of information technology to manage caregiver medications for millions of people with dementia.

Newswise – INDIANAPOLIS – More than 21 million people provide unpaid care to millions of people with dementia in the U.S. With contributions from Caregivers, researchers at Regenstrief Institute, Indiana University, the University of Wisconsin and Purdue University are developing and testing Helping the Helpers. , a user-based evidence-based app to help dementia caregivers help them manage medications for people who can’t do it independently.

Taking advantage of application-based information technology to help manage medications for people with dementia and share their research with caregivers to help others develop or adapt technology, Regenstrief, IU, one of the first Wisconsin studies. and Purdue researchers have published a standard gold standard methodology related to:

  • Remote assessment of the needs of caregivers who manage medications for people with dementia.
  • Design of a prototype application to support caregiver-assisted medications together, including caregiver input.
  • Feasibility testing of the prototype application.

Among other innovations, the researchers added a virtual component to the contextual consultation to find out what caregivers experience during the day while dealing with medication management.

“We want to know what’s going on,” said Richard Holden, author of the study, PhD, MS, human factor engineer, social cognitive psychologist, and implementation scientist. “So we ask participants to record what they experience during the day related to medication management and to send something twice a day. It can be a photo, a video, an audio file, or a written note. It can be a picture of the large number of medications that need to be managed. It may be a video of a patient refusing to take medication. We look at this input and it is an important component of our participatory design with caregiver innovation. ”

Managing medications for people with dementia is often confusing, time consuming, and difficult, especially if the patient with a cognitive impairment is resistant, belligerent, or both. Caregivers, many of whom have other responsibilities inside or outside the home, typically have little training, resources, and support as drug managers. This can lead to significant burden of caregivers, stress, and mistakes that can be life-threatening for a person with Alzheimer’s or related dementia.

“My family and I understand the daunting challenges of caring for someone with dementia. My mother and brother are my father’s primary caregivers, and I am a remote ‘tele-caregiver’. We know that caregivers need help, ”said Dr. Holden. “As the U.S. population grows, the need for user-centered care for caregivers, like our Helping the Helpers app, becomes even more necessary. we have come up with the idea of ​​producing technology to meet the needs of innovative methods. “

According to the Alzheimer’s Association, by 2022, 6.5 million Americans over the age of 65 will be living with Alzheimer’s dementia in 2022. This figure is projected to rise to 7.2 million in 2025 and is projected to reach 13.8 million in 2060, excluding development. Any medical progress in preventing, slowing or curing Alzheimer’s.

“There are many applications available today to manage medications that support a variety of tasks, but very few are developed and designed for caregivers with specific attention to the needs of caregivers,” said Noll Campbell, PharmD, MS, Regenstrief Institute and Purdue University College. Pharmaceutical.

The paper Helping the Helpers concludes: “Ultimately, if successful, our IT (information technology) intervention should be available and acceptable to a range of US users who can directly benefit from IT directly or indirectly. without intensive care ”.

“Helping the Helpers – A user-focused technology research protocol to help manage medications for people with Alzheimer’s disease and related dementia,” was published in the peer-reviewed journal. Social and Administrative Pharmacy Research.

In addition to doctors. Holden and Campbell, the authors of the paper, are Nicole E. Werner, Ph.D., University of Wisconsin-Madison; Malaz Boustani, MD, MPH, Regenstrief and IU Medical School; and Aaron Ganci, MFA, IUPUI’s Herron School of Art and Design. Dr. Werner will join IUSPH-Bloomington Faculty in August 2022.

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

About Richard Holden, PhD, MS

In addition to his role as a researcher at the Regenstrief Institute, Richard J. Holden, Ph.D., is a professor and MS, Dean’s Eminent Scholar, Indiana University School of Public Health — Bloomington’s Department of Health and Wellness Design and early president. Professor of Medicine at the IU School of Medicine and Chief Health Engineer at the Center for Health Innovation and Implementation Science.

About Noll Campbell, PharmD, MS

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

About the Regenstrief Institute

Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national, and global leader where better information is dedicated to the world to empower people to end their illness and achieve true health. A key research partner at Indiana University, Regenstrief and his research scientists are increasingly committed to major innovation and research in the health service. Examples include the development of global standards for health information technology that enable the use and interoperability of electronic health records and improve patient-physician communications, the creation of care models that inform patient practices around the world, and improve the lives of patients around the world.

Sam Regenstrief, a successful entrepreneur in the state of Connersville, Indiana, founded the institute to make health care more effective and accessible to all. His vision continues to drive the institute’s research mission.

About Indiana University School of Public Health-Bloomington

The IU School of Public Health-Bloomington (SPH-B) is one of the largest public health schools in the United States and offers programs in a variety of health-related areas. Accredited by the Public Health Education Council (CEPH), the school aims to promote health among people in Indiana, nationally and globally through integrated, multidisciplinary approaches to research and creative activities, teaching and community engagement.

About Purdue University College of Pharmacy

Purdue University College of Pharmacy’s mission is to advance scientific discoveries and developments, maximize global health outcomes through patient care and public service, and educate and train students to become leading pharmacists and scientists. The goal is to transform the practice and science of pharmacy to lead to advances in human health.

About the IU School of Medicine

IU Medical School is the largest medical school in the United States and is ranked among the top medical schools in the state each year by the US News & World Report. The school offers high-quality medical education, leading medical research, and a rich campus life in nine Indiana cities, including rural and urban locations, with continued recognition of livability.


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