If you saw someone living with dementia, would you recognize the signs? Would you know what to do to ease their way and to help them feel like a part of the community?
Dementia Friends USA is part of a global movement designed to change the way people think, act and talk about dementia. A volunteer-driven program founded in the United Kingdom, Dementia Friends is now offered in 51 countries across the world.
By becoming a Dementia Friend, participants acknowledge the unique role each of us could play in the lives of people living with dementia in our community. The movement recognizes that everyone can help to create a dementia-friendly society. At the University of Minnesota, Dementia Friends offers interprofessional learning opportunities for students and opportunities for community outreach.
The Staggering Societal Impact of Dementia
According to the Alzheimer’s Association, one in three seniors dies with Alzheimer’s or another dementia. By 2025, the number of people age 65 and older with Alzheimer’s dementia is projected to reach 7.2 million—a 16 percent increase from the 6.2 million age 65 and older affected in 2021. Without new medical breakthroughs to prevent, slow or cure Alzheimer’s, the number of people with Alzheimer’s disease is predicted to grow to 12.7 million by 2050.
Dementia is the overall term for a particular set of symptoms including difficulties with memory, language, problem-solving and other skills that affect daily life, with Alzheimer’s disease as the most common form of dementia. The Alzheimer’s Association estimates that 60 to 80 percent of all cases of dementia include a diagnosis of Alzheimer’s disease. Other dementia types include Lewy Body dementia, vascular dementia and Parkinson’s disease dementia, mixed dementias and others.
Changing the Way We Think, Act and Talk About Dementia
Teresa McCarthy, MD, MS, associate professor in the Department of Family Medicine and Community Health, has been an advocate for Dementia Friends since she first learned of the program through her service almost a decade ago on a statewide group convened by the Minnesota legislature to address issues related to Alzheimer’s disease.
“As a geriatrician practicing in the community, Dementia Friends struck a chord with me at a visceral level,” said McCarthy. “In medical school, I learned about Alzheimer’s disease in a pathology course—always from a very scientific perspective. A core principle of geriatrics is understanding how persons with dementia interact with their environment. The Dementia Friends information sessions help to do this. We’ve received rave reviews on this program in the disciplines we’ve worked with so far, including medical students on their geriatrics rotation, nursing, nurse practitioners, pharmacy and physical therapy students. Dementia Friends offers insights they’ve never received elsewhere and addresses why most students wanted to become clinicians.”
Along with offering Dementia Friends to health science students, McCarthy coordinated efforts for leadership of the Minnesota Northstar Geriatrics Workforce Enhancement Program (MN GWEP) Interprofessional Geriatric Coordinating Council to be trained as Dementia Friends Champions.
One Hour of Time to Make a Difference
Trellis—formerly known as the Metropolitan Area Agency on Aging—has an agreement with the Alzheimer’s Society of the United Kingdom, to offer Dementia Friends in Minnesota. After completing a one-hour informational session, participants are called a Dementia Friend. If participants decide to offer the program to others, they can be trained as a Dementia Friends Champion. Those who train Champions are called Master Trainers.
One such Master Trainer is Trellis volunteer Colleen Fritsch. A former staff member of Trellis, Fritsch retired in 2018 to pursue her passion of serving as a Dementia Friends volunteer. Part of her volunteer role is coordinating approximately 300 Dementia Friends Champions across Minnesota.
“What captivated me with Dementia Friends is the fact that if someone gives one hour of their time, they could make life better for someone else,” said Fritsch. “By becoming a Dementia Friend, you are increasing the safety net and supportive tissue for those living with dementia. I’m absolutely honored to be part of this program.”
Before Fritsch had learned of Dementia Friends, she had her own personal experience with a family friend and mother-in-law living with dementia. “We figured out many things on our own, and it’s in their honor that I do this knowing it will make a difference for others,” she said.
In the Dementia Friends informational session, participants learn about common misperceptions about dementia, and the difference between forgetting and memory loss.
“The difference between forgetfulness and memory loss is one of the things we explain,” said Fritsch. “Another is that dementia is not just about memory loss. For example, there are vision changes that take place with dementia. The eyes may still work, but the brain may not be able to process visual images. We also discuss the fact that it can take up to 20 seconds for those living with dementia to process what is being asked and to formulate and articulate a response.”
Opportunities for Community Outreach
Brian Isetts, PhD, BCPS, FAPhA, is a professor in the Department of Pharmaceutical Care & Health Systems in the College of Pharmacy and serves as the student advisor for the Geriatrics Action Group of the Minnesota Pharmacy Student Alliance. As an expert in the study of outcomes of medication therapy management services provided in integrated, team-based care settings, Isetts sees great potential in the Dementia Friends movement.
“There is a bias that when you find out a person has dementia, people tend to shy away from them,” said Isetts. “We need to figure out how we function as a society to meet their needs and effectively communicate with them.”
With interprofessional students as Champion trainers, Isetts is coordinating Dementia Friends activities in assisted living facilities and has plans to expand to student clubs, community groups such as churches or clubs, and more.
“Dementia care is a hot button issue right now in pharmacy,” said Isetts. “We have such a great need to find new treatments and therapies for those with Alzheimer’s disease. We do know that keeping people with dementia in their homes as long as possible helps them thrive.”
On Jan. 6, 2022, pharmacy student Priya Periakaruppan led a Dementia Friends informational session for residents at Ebenezer Ridge Point Apartments in Burnsville. A member of the University’s student chapter of the American Society of Consultant Pharmacists, an organization focused on geriatric pharmacy, Periakaruppan, two medical students and a nursing student led the Dementia Friends session. More information sessions are scheduled in February and March.
Periakaruppan sees great value in the program for her future role as a pharmacist. “We live in a world moving at an incredibly rapid pace,” she said. “We don’t need to rush everything, especially with patient encounters. Not everyone has the same health literacy level, and if you add dementia on top of that, it’s a whole other level of thinking. There’s a need to adapt the way we explain things and definitely take a different approach when interacting with patients with dementia.”
Research is underway to evaluate the effects of Dementia Friends information sessions on participants’ attitudes towards, and comfort levels with, people with dementia. Medical students Michelle Berning and Amy Parkinson, along with Teresa McCarthy, MD, associate professor of medicine, Edward Ratner, MD, associate professor of medicine, and others are studying the effect of Dementia Friends with an instrument called the Dementia Attitudes Scale. The study was accepted for a poster presentation at the American Geriatrics Society conference in May 2021.
As a hospice volunteer in skilled nursing facilities, Periakaruppan has a personal interest in dementia and sees many patients with different stages of dementia.
“Those with dementia still have very strong emotional memories and we can use this connection to help support them,” said Periakaruppan. “It’s so important for people to know that those with dementia can still have a good quality of life.”
How Do I Become a Dementia Friend?
Learn more at the Dementia Friends Minnesota website:
The Minnesota Northstar Geriatrics Workforce Enhancement Program has a team of Champions who offer Dementia Friends sessions to many groups. Private Dementia Friends information sessions are also available. Many UMN faculty instructors have integrated a Dementia Friends session into a class period. Email [email protected] for more information.