Using information technology to support the management of medicines that care for millions of people living with dementia

Newswise – INDIANAPOLIS – More than 21 million people provide unpaid care for millions of people living with dementia in the United States Evidence-based application in support of people caring for dementia, as they help in the management of drugs – very often many drugs for various conditions – of people who can not do it alone.

In one of the first studies using application-based information technology to help caregivers manage medicines for people with dementia, and to share their research with others who are developing or adapting technology to help people caregivers, Regenstrief, IU, Wisconsin and Purdue researchers have published their gold standard methodology related to:

  • Remote assessment of the needs of caregivers who administer drugs for people with dementia.
  • Joint design, including input from carers, of a counter-application to support care-assisted medicines.
  • Feasibility testing of the application prototype.

Among other innovations, the researchers added a virtual component to the contextual study to learn what caregivers go through during the day as they cope with drug management.

“We want to know what’s going on,” said study author Richard Holden, Ph.D., MS, human factors engineer, social cognitive psychologist and application scientist. “Therefore, we ask participants to record what they go through during the day related to drug management and to send us something twice a day. This can be a photo, video, audio file or a written note. It may be a picture of the large number of drugs that need to be administered. It could be a video of a patient refusing to take medication. We analyze this contribution and it is an important component of our collaborative design with caregiver innovation. ”

Managing medications for people with dementia is often confusing, time consuming, and difficult, especially if the patient with cognitive impairment is resistant, militant, or both. Caregivers, many of whom have other responsibilities in or out of the home, are usually under-trained, under-resourced, and supported in their role as drug managers. This can lead to a significant burden of care, stress and potential mistakes that can be life-threatening for an individual with Alzheimer’s disease or related dementia.

“My family and I understand the great challenges of caring for someone with dementia. My mother and brother are the main caregivers for my father, and I am a remote “telepathologist.” We know that caregivers need support, ”said Dr. Holden. “As the United States ages, the need for customer-oriented support for caregivers, such as our Helping the Helpers app, becomes even more necessary. My colleagues and I present the methodology of our research in this paper so that other researchers and developers have access to the framework of innovative methods we have developed to produce technology that meets the needs of planned end users – the actual carers.

According to the Alzheimer’s Association, approximately 6.5 million Americans aged 65 and over are living with Alzheimer’s dementia in 2022. That number is projected to rise to approximately 7.2 million in 2025 and is expected to reach 13.8 million in 2060, with the exception of the development of any medical breakthroughs to prevent, delay or treat Alzheimer’s disease.

“Currently, there are countless drug management applications that support a variety of tasks, but very few have been developed and designed for caregivers with special attention to the needs of caregivers,” said Nol Campbell, pharmacist, MS. from the Regenstrief Institute and Purdue University College of Pharmacy.

The Helping the Helpers concludes: “Ultimately, if successful, our IT intervention should be usable and acceptable to a number of US users who could benefit immediately from IT without directly or indirectly taking over the costs associated with the clinician – intensive care. “

“Helping the Helpers – A Research Protocol on Consumer-Oriented Technology to Assist Caregivers in the Management of Medicines for People with Alzheimer’s Disease and Related Dementia” was published in the peer-reviewed journal. Research in social and administrative pharmacy.

In addition to Dr. Holden and Campbell, authors of the article are Dr. Nicole E. Werner, University of Wisconsin-Madison; Malaz Boustani, MD, MPH, Regenstrief and IU School of Medicine; and Aaron Ganci, MFA, IUPUI’s Herron School of Art and Design. 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.

Regarding Richard Holden, PhD, MS

In addition to his role as a Research Fellow at the Regenstrief Institute, Richard J. Holden, PhD, MS, is a Distinguished Dean, Professor and Head of the Department of Health and Wellness Design at the Indiana-Bloomington University School of Public Health, Professor in Medicine at the Medical Faculty of IU and Chief Health Engineer at the Center for Health Innovation and Applied Science.

Regarding Noll Campbell, PharmD, MS

In addition to his research role at the Regenstrief Institute, Noll Campbell, PharmD, MS, he is an assistant professor of pharmaceutical practice at Purdue University College of Pharmacy and an associate 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 stop disease and realize true health. A major research partner at Indiana University, Regenstrief and its researchers are responsible for the growing number of major innovations and research in healthcare. Examples range from developing global standards for health information technology that allow the use and interoperability of electronic health records to improving patient-physician communication, to creating care models that inform practice and improve patients’ lives around the world.

Sam Regenstreff, a nationally successful entrepreneur from Connorsville, Indiana, founded the institute to make healthcare more efficient and accessible to all. His vision continues to guide the research mission of the institute.

concerning 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, offering top-ranked programs in a wide range of health-related fields. Accredited by the Public Health Education Council (CEPH), the school aims to promote health among Indians, the nation and the world through integrated multidisciplinary approaches to research and creative activities, teaching and community engagement.

About Purdue University College of Pharmacy

The mission of Purdue University College of Pharmacy is to promote scientific discovery and development, maximize global health outcomes through patient care and public services, and educate and train students to become leading pharmacists and scientists. The aim is to transform the practice and science of pharmacy in order to make progress in human health.

About IU School of Medicine

IU School of Medicine is the largest medical school in the United States and is annually ranked among the best medical schools in the nation by US News & World Report. The school offers high-quality medical education, access to leading medical research, and a rich campus life in nine Indiana cities, including rural and urban areas consistently recognized as habitable.

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