October 12, 2017
By Greg Peters
Students from the University of Kansas School of Medicine are volunteering for a yearlong educational program that pairs first-year students with people who are in the early stages of Alzheimer's disease.
The Partnering in Alzheimer's Instruction Research Study (PAIRS) Program started in 2013 in the Kansas City Metro area to help KU medical students, regardless of their areas of specialization, gain insights into working with patients with dementia, while providing friendship and emotional support for the subjects and their families. The Heart of America Alzheimer's Association chapter estimates 50,000 people in the metro area are living with dementia, so as the population continues to age, student involvement in programs such as PAIRS will be especially important.
"This is a wonderful program that provides a great opportunity for students to work directly with Alzheimer's patients early on in their medical school careers," said Mark Meyer, M.D., professor in the Department of Family Medicine and associate dean for student affairs in the School of Medicine. "It's an opportunity for students to build relationships in the community and to see first-hand the challenges these patients face."
PAIRS is a voluntary activity for medical students, so their reasons for joining are as varied as the number of participants who get involved each year. For some, it's an opportunity to learn more about working with people who are living with dementia and their caregivers, while for others it's a chance to gain a friendship with someone new.
"I am a believer that if you want to do something, you make time for it," said Emily Feng, who paired with Nancy Shaver, a former nurse from Leawood. "There is never enough time in life, and there is an endless amount of studying to do. It is important to stay compassionate and grounded as I go through medicine, and PAIRS gives me a wonderful opportunity to really understand what my future patients may be going though."
How PAIRS got its start
The origins of PAIRS - which is sponsored by the Heart of America Chapter of the Alzheimer's Association, the KU Alzheimer's Disease Center and the Landon Center on Aging - can be traced to Chicago and the Northwestern University Buddy Program, which sparked the PAIRS program at Boston University. PAIRS got started in Kansas City after a staff member at the Alzheimer's Association shared a newspaper story about the Boston program with Michelle Niedens, director of education, programs and public policy for the local Alzheimer's Association chapter.
Niedens thought the idea was so good that she contacted the KU Alzheimer's Disease Center, and within a few years the local program got its start. The local program is funded through the financial support of James and LaVerna Shaw.
"Whether the student ends up in orthopedic surgery, primary care or the emergency room, they will be caring for patients with dementia," said Deon Hayley, DO, a professor in the Division of General and Geriatric Medicine in the KU School of Medicine, who serves as the physician representative for PAIRS. "This program helps them understand that early dementia can be very subtle. The patients may appear to be articulate and their cognitive impairments are not so obvious, especially if you are focused on another medical condition. I also hope this helps students become more attuned to the emotional side of living with a chronic, incurable disease."
Finding a match
Two ceremonies at the Alzheimer's Association chapter office in Prairie Village, Kansas, serve as bookends for the academic year: "match day" in the fall and a day of reflection in the spring, when the students share a formal letter with their partners. Niedens screens the applicants and pairs students and participants based on their common interests. On match day, the medical students meet their PAIRS partners to get acquainted with a conversation over breakfast.
"This program is not about focusing on the disease, it's about learning together," Niedens told the 13 participants and their PAIRS partners who gathered Sept. 23 for match day. "And it's about becoming stronger together."
Lynn and Ed Vaughn from Pleasant Hill, Missouri, have a new friend, Jennifer Li, thanks to PAIRS. These are challenging days for the couple, who have been married for 42 years. Now, more than ever, they must rely on each other to cope with Lynn's memory loss. For Li, working with a person living with Alzheimer's disease will be a new experience.
"It's difficult to be someone who is just as bright as you are, and then there are times when I can't remember my name," says Lynn. "You just can't imagine how it is when you know what you're saying, but you can't remember what you said."
"Both of us have been very career-oriented and strong-willed, and to see her not be able to communicate the way she used to ... it's difficult," Ed said. "You can see in her eyes that she knows what she's trying to say, but she can't get it out."
Roz Stoneking had a message of optimism and perseverance for her student match, Sydney Edmisten, a young woman she watched learn how to ride a bicycle while growing up just a few houses down from her in Prairie Village, Kansas.
"I hope that I will be able to convey a sense of optimism and the importance of having a positive attitude," she said. "It's important to continue to grow and learn and contribute to society, no matter what your health condition is."
And for Edmisten, its' a chance to get away from the rigors of medical school and have a new friend. "It's great to have a new relationship like this," Edmisten said. "It's not the kind of friendship I would normally have because usually my friends are people of the same age and background."
During the course of the academic year, the students are required to spend approximately four hours monthly socializing and communicating with their paired participant. The students also compile a journal of their reflections each month and are encouraged to take part in an educational session each month that covers medical, social and practical topics related to dementia.
At the end of the year, the group comes together and students read letters they have composed reflecting on the experience working with a person with dementia.
"Students who have completed this program express the benefit to getting to understand people deeper than a diagnosis and gaining comfort in talking to patients," said Hayley. "The individuals with dementia who are paired with students report that this is a wonderful gift to them that they have someone to teach and who will listen to them. Clearly, it is advantageous for both parties."