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Resources for the Caregiver: Dementia Outreach and Education

As the sixth leading cause of death in the United States, the Alzheimer’s Association estimates that 5.8 million Americans age 65 and older are living with Alzheimer’s dementia as of 2020. In Minnesota, the prevalence of the disease is expected to increase by 17.4 to 22.6 percent between 2020 and 2025. Caregivers are often tasked with a multitude of challenges of daily living activities while providing emotional support for those with Alzheimer’s and other dementias.

As a degenerative disease, Alzheimer’s and other related forms of dementia is long-lasting—in some cases up to two decades after the symptoms of memory loss and other cognitive issues become noticeable. The slow burden of the disease is staggering. In 2020, the Alzheimer’s Association reported that one in three individuals die with Alzheimer’s or another form of dementia.

Recognizing the public health impact of dementia and dementia caregiving, the University of Minnesota has undertaken a bold initiative through the Minnesota Northstar Geriatrics Workforce Enhancement Program (MN Northstar GWEP) to improve the health care and health of older adults across the state of Minnesota.

As part of its five-year commitment, MN Northstar GWEP is offering public education and support for families and caregivers through its Minnesota county tour on dementia and dementia care—Dementia Educational Experience Roadshow (DEER). The educational program offers critical skills training and education for caregivers, families, communities and health professionals.

Meeting a need for dementia caregivers

According to the Alzheimer’s Association, Alzheimer’s disease is the most common form of dementia, accounting for 60 to 80 percent of all cases. Other forms of dementia include Lewy Body disease, Parkinson’s disease, and fronto-temporal lobar degeneration, among others. As the number of Americans age 65 and older continues to increase, the number of Americans with dementia will also grow.

Joseph Gaugler, PhD, serves as professor and the Robert L. Kane Endowed Chair in Long-Term Care and Aging at the School of Public Health. His research focuses on Alzheimer’s disease, family caregiving and long-term care. The origins of the DEER program go back to 2008, when Gaugler was invited by organizations focused on aging issues to give talks on dementia throughout the state.

“One of the things that has been most gratifying is the response from these local communities,” said Gaugler. “For some talks, we’d have hundreds of people show up to learn more about this topic that is so relevant in their day-to-day lives.”

Since the COVID-19 pandemic hit in March, Gaugler has provided virtual webinars instead of an in-person program. Participation has been high, with more than 1,700 participants in one webinar last spring.

“We’ve continued our commitment to providing educational outreach on topics related to Alzheimer’s disease and dementia—and other issues important to Minnesotans on long-term care,” he said.

At the end of each seminar, attendees have access to online resources through the Health Care Interactive CARES interactive online modules.

“These online modules are interactive and dynamic—and are available for professionals and family caregivers,” said Gaugler. The caregiver course covers dementia care for families and offers practical strategies, tips and other information.

Those who attend DEER program events are also eligible to have access to professional coaching calls with Robyn Birkeland, PhD, study interventionist with the School of Public Health. The coaching calls are offered free of charge on a first-come, first-served basis, within three months of the presentation.

“During the two coaching calls, we talk about any issues or questions the attendees may have, including caregiving concerns, questions on how dementia progresses and long-term care decisions,” said Birkeland. “The overwhelming majority of those participating in the coaching calls are personal caregivers and typically family members.”

Birkeland notes that Alzheimer’s is a slow-progressing disease, whereas other types of dementia may appear more quickly.

“It’s common for family members to look back and realize that there were some signs and clues before an Alzheimer’s or dementia diagnosis,” said Birkeland. “Oftentimes there may be changes in behavior and personality. It’s especially challenging during the time of COVID, with families feeling more isolated and not able to have the social interactions we typically share.”

Annual Conference on June 5, 2021

Another enormously popular opportunity for caregiver education is the annual Caring for People with Memory Loss Conference. This year, the conference will be held on Saturday, June 5 and will include experts in a lively, informative discussion on memory loss, caregiving tips, and education. The conference is offered at no cost for adult children, spouses, parents, health and community care providers and others interested in learning more about caring for those with dementia.

An annual daylong conference since 2008, the conference has covered a wide variety of topics for caregivers. Plans for this year’s event include speakers on creativity and dementia, policy updates, cultural humility and dementia, and more.

As an applied gerontologist, Gaugler is committed to robust outreach for community-based dementia education.

“It’s gratifying to see the response from the local communities and the importance of this topic in the day-to-day lives of the people we reach,” he said. “Having a virtual approach during the pandemic has allowed us to continue this important outreach.”

Caregiving for a person with Alzheimer’s or a related dementia
According to the Centers for Disease Control (CDC), people with Alzheimer’s and related dementias are usually cared for by family members or friends. Paid home health professionals may also provide care with the majority of people diagnosed, up to 80%, receiving care in their homes. The CDC reports that caregivers of people with Alzheimer’s and related dementias provide care for a longer duration than caregivers of people with other conditions.

To learn more
If you are interested in having Dr. Gaugler provide the DEER program in your region of Minnesota, please contact Ann Emery, MS, CRC, at 612-626-9515 or carl0219@umn.edu for more information. To learn more about the Caring for People with Memory Loss one-day conference, visit the website or contact Kate Heckathorn at hecka008@umn.edu.

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