Memory Book Project Unites Students, People Living With Dementia
For some of us, the time will come when those memories are irretrievable — one of the more devastating consequences of dementia. Another is the way that some people living with dementia can feel labeled and erroneously classified into one homogenous group after being diagnosed.
Bob Savage is among those affected by what he calls the “stigma of dementia” since his diagnosis six years ago at age 84. I met Bob, a resident of the LiveWell residential community in Southington, Connecticut, when I was invited to participate in Quinnipiac’s Legacy Storytellers program in Fall 2020.
The program is conducted several times a year through Quinnipiac’s Center for Interprofessional Healthcare Education with students from various health science disciplines, as well as other majors. Faculty from occupational therapy, social work, physical therapy, diagnostic imaging and education have served as supervisors.
Under the guidance of their professors, students work in two-person teams to interview their assigned person living with dementia over a five-week period and then write and design a hardcover book they present to that person during the last session.
The books, which students create on Shutterfly, contain much more than biographical facts. They feature funny stories, memorable trips, family history, advice, and life lessons individuals have learned and want to pass on before they are forgotten. Families have expressed how grateful they are to have such a keepsake, and the books also serve as a tool of sorts for the person with dementia on days when the right word or date just won’t come.
Last fall, there was an opening for a volunteer scribe on one of the student teams, and Norene Carlson, assistant clinical professor of occupational therapy, asked whether I’d like to help out. I had a good idea of what to expect after doing a story about the program for our website in Spring 2020, when I was invited — via Zoom — into the living room of Nancy and Mike. Their scribes were Sadia Ali ’23, MHS ’25 and Sarah Daghestani ’20, MOT ’21.
I watched as these young women presented the book they created for Nancy, an individual living with Alzheimer’s disease. As they reviewed the book together, every turn of the page elicited a smile from Nancy and exclamations of “How did you get all this?” and “I will cherish this forever.”
Norene said one important thing students take from this experience and bring into their future health care careers is the concept that each person living with dementia is unique.“ They are people first, with different lives, different things they love doing, and different relationships,” she said.
Seeing the range of emotions wash over Nancy’s face and her happiness reflected on the faces of her book authors, I was inspired. When Norene’s invitation came, I couldn’t pass up the opportunity.
Telling Bob’s story
Norene paired me with Jessica Leach, MOT ’24, who was in the second year of a 5½-year master of occupational therapy degree. We were excited to learn that Bob would be our interview subject. We had “met” him during a Zoom introductory session for all 10 of us volunteer scribes, before we’d been assigned our “dementia friends.”
During that group session, Bob laid bare his emotions about having dementia and shared how he came to despise the way he felt others perceived him after his diagnosis. He put those feelings down in a poem he titled, “They.” Bob’s poem is included below.
“Who are these people who, after one word, we call them THEY
Did they have any choice as to why we call them THEY
Sometimes just one word (DEMENTIA) is why they are THEY
Is a person any different after dementia diagnosed as THEY
We still love, hate, think, enjoy, cry, be depressed after THEY
We still love our family, friends, have enemies after THEY
We still love movies, parties, vacations, traveling after THEY
We still have emotional upsets, anger, frustrations after THEY
We do not like the loss of independence after THEY
We do not like the loss of social contact after THEY
We do not like people deciding and speaking for us after THEY
We do not like being a burden to those we love after THEY
We like to continue to speak for ourselves after our THEY
We like to be involved in all our decisions after our THEY
We like to set up new social contacts after our THEY
We like to be accepted in our communities after our THEY”
Some of us teared up as he described how it felt to be collectively referred to as “they”— any and all people diagnosed with dementia — instead of being treated as individuals coming to terms with evolving life stories.
Over the next five weeks, Bob shared that life story with Jessica and me on Zoom. If not for the pandemic, we could have had our sessions in person. We had questions, and Bob had answers. We laughed as he described the hijinks of his youth in Maine, his two marriages, and his two careers. We also got to know his children a little through their father’s eyes.
In 2015, Bob’s life began to unravel a bit. His wife, Anne, noticed that he was becoming increasingly forgetful. They saw a gerontologist who gave Bob some cognitive assessment tests and eventually diagnosed him with Alzheimer’s disease.
“At first, I was in denial and went through a terrible six months,” Bob recalled. He felt a bit written off by people he knew. Eventually, he began to accept the diagnosis, and he visited a memory center, where he said he “got serious.” A nurse and social worker there emphasized that in his early state, it was important for Bob to stay active.
After spending hours with Bob online and visiting him at LiveWell in April for a photo shoot, I can attest to the fact that his blue eyes are clear, sharp and focused on whomever he’s talking to, and they twinkle when he talks. People of all ages who meet Bob are delighted by his sense of humor and his positive outlook.
Dementia is defined as a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily life. Several different diseases may cause the condition, including Alzheimer’s. Society has long viewed people living with dementia as individuals unable to care for themselves, struggling with loss of memory and identity, helpless and vulnerable, according to the informational manual we received from the Alzheimer’s Association.
Read about nursing professor Sheila Molony’s recent $255K grant to better understand and improve the quality of life for those living with dementia
However, people with early stage Alzheimer’s disease are generally independent, productive and, for the most part, able to communicate and interact like those without that diagnosis. Many of them are still active, engaging in sports and activities such as cycling, kayaking, hiking and it is not unusual for them to still be driving or working.
Bob’s condition has not progressed as quickly as he had feared, and he thinks he knows the reason. Instead of sitting around his room at LiveWell and telling himself his life was over, Bob began speaking at Alzheimer’s workshops and in 2017, he helped to spearhead the Dementia Peer Coalition, which was created by and for people with dementia. The organization’s purpose is to connect people with dementia to one another for support; advocate for the priorities of people living with dementia; reduce stigma and raise awareness through community education; and increase research.
Bob also organized support groups for people living with dementia. One day, his group visited the Mattatuck Museum in Waterbury, which motivated him to take a painting class at the museum. He became fascinated with color, especially yellow, which he said spoke to him.
He discovered that there was a different shade of yellow for all of his varying emotions — soft yellow for favorite experiences, bright yellow for fright, and so on. More than 20 of his abstract paintings decorate the walls of his LiveWell room, and he has gifted friends and staff with his work.
Sharing his story about dementia gives Bob a sense of empowerment, even if sharing can be difficult at times. He reminds himself often that he still has many of his cognitive abilities and must do everything in his power to keep them as long as possible. One day at a time. He knows he still has much to offer, and it is important to him that the people with whom he interacts keep that top of mind.
Norene and Erica DeFrancesco, director of community education at LiveWell, tapped Bob to be part of a presentation they made recently at a Connecticut Association of Occupational Therapists conference in March.
“Educating others about dementia gives me a reason to get up every morning,” Bob said. “I found my purpose in life, and this is it.” He feels strongly that youth hold the key to reducing the stigma of dementia in the future. He was also working with a student from another university who plans a career counseling people with dementia. “No book in the world is going to tell you how to do that,” he said.
Bob has observed that some people are afraid to get diagnosed because of societal attitudes, but he feels it’s better to know and put yourself out there — take risks as he describes it.
What’s in it for students?
Erica brought the Legacy program to Quinnipiac when she was a professor of occupational therapy. She transitioned to LiveWell after five years at QU and works at the LiveWell facility where Bob resides in assisted living. Masonicare clients were the first program participants.
More than 70 people with dementia and more than 140 QU students have participated in all. This fall, the School of Health Sciences will be offering the Legacy Project as a one-credit course at Artis Senior Living of Branford.
Students undertake the volunteer scribe role as a service learning experience, collaborating and learning from each other as they gain insights from clients with dementia. Erica helps to recruit people living with mild or moderate dementia from the community interested in sharing their stories and having them captured in the legacy books, which are funded through the Center for Interprofessional Healthcare Education.
Before meeting Bob, Jessica thought she would prefer working with children. “After doing this project, I completely changed my mind, and I’m currently looking for part-time jobs where I can work with older adults,” she said.
Both of her grandfathers had Alzheimer’s disease, so she was a bit nervous at the start. But Bob was disarming, and they related well to each other. “I found it interesting that he used poetry and painting to express himself. These are things we need to use more in health care. In occupational therapy, we find what people like to do and use that to help treat them. It’s awesome that he found those things on his own,” she said.
Erica mentioned that Christina Garcia ’21, MOT ’23, has done the program twice and wants to do it again. I reached out to Christina to find out why. It’s actually pretty simple: She loves seeing the clients’ joyful reactions, and she knows it’s really good experience. She also learned something about herself.
Her first experience also gave her credit hours in CIHE’s program of distinction. This optional program enables students from all of Quinnipiac’s health care-based programs to develop the core competencies of interprofessional, team-based health care over 60 hours of experiential learning activities. Graduating with the distinction in interprofessional health care education proves to employers that students have experienced the team dynamic that defines patient care today.
“My first book was with “Jim” (name has been changed to afford the client privacy) and he told us the sessions were the best part of his week. He said he lived a great life and considered us to be a part of it at that point, so it was the most moving thing ever!” she said with a wide smile.
Although his book presentation was on Zoom, Christina could see Jim tearing up as he and his wife looked through the book, with Jim eagerly flipping to the next page. She said he was a bit further along than some with his disease progression, so his wife would prompt him if he needed help. “I enjoyed seeing their connection in real time,” she said.
Christina noted that many people living with dementia shy away from that topic for their books, preferring to focus on the past. This was not the case for her second client, “Laura” (name also changed for privacy reasons), a retired lawyer who was in her 50s — quite a bit younger than Christina was expecting.
“She really wanted to talk a lot about how her life changed after her diagnosis and about the accompanying hardships, like losing friends because they didn’t know how to handle someone their age getting Alzheimer’s disease,” Christina explained, adding that Laura’s fluent speech and intelligence belied the fact that she had early-onset Alzheimer’s.
She was impressed with Laura’s desire to advocate for others living with dementia and to educate health care professionals about how to break the news of such a diagnosis to patients. “I think she did not have a great experience with her own diagnosis,” Christina said.
“They were two such different people in two different stages, and both inspiring in their own ways,” she said.
Like Jessica, Christina thought she wanted to work with children — until she experienced the Legacy program. “I didn’t realize what the older adult population has to offer, and after doing this twice, I now consider adult occupational therapy an option for me,” she said.
“Part of OT is learning to empathize with people going through life-changing things, and the Legacy Storytellers program ties in so well with that,” she said.
Sarah, who worked on Nancy’s book, compared dementia to a full bookshelf. “If I push the shelf over, the books up top may fall out because they represent our short-term memory while the books at the bottom represent childhood memories deeply ingrained in us; we are unlikely to forget those as quickly.”
Working with Nancy taught her to be an active listener. “It was an honor to listen to her and focus on her words and feelings. I was able to picture the stories she told.”
Nancy told her scribes that dementia “can be such a bad word.” But Sarah said the Legacy program proves dementia is not just a disease. “There is an actual life and a person there,” Sarah said.
Kim Hartmann ’76, MHS ’82, professor of occupational therapy and director of the Center for Interprofessional Healthcare Education, noted that people living with dementia may have many health care providers and caregivers.
“Each profession has been educated to communicate a bit differently and to have different roles, but this diversity can lead to increased confusion for the person living with dementia and their family. If students learn early how to share their communication strategies, tag-team their professional roles, and collect information as a true team, as they do with the Legacy program, it can lead to less confusion for the person and a higher quality of care for all,” Hartmann said.
Making the connection
Jessica and I traveled to Bob’s home at LiveWell in Southington one warm day in April to meet him in person, take some photos, and bring him some chocolate chip cookies. Norene made the trip as well, and Erica was able to join this reunion of sorts. Bob did not know Jessica would be there, and he was thrilled to see her. The feeling was mutual.
Bob gave us a tour of the “art gallery” we’d only glimpsed on Zoom, and we sat outside for a bit. He says visits like this energize him. “I can feel more brain cells materializing!” he quipped.
Bob said his book sparked a lot of conversation with family and friends. “Each photo brought memories around where it was taken, and beautiful conversation ensued,” he said, adding: “I’m so proud of it.” He bought 20 copies to give to family and friends.
Norene has directed three sessions of the program for Quinnipiac and has observed its “profound impact” on both students and clients. Her favorite interview session is the one when couples talk about how they met and fell in love.
“The program is a powerful means to reduce the stigma that persons living with dementia face, and the books allow those individuals to pass on the wisdom of a life well lived to our students,” she said.
Laura Mutrie, clinical assistant professor of social work, agrees. “I’ve been doing this program four or five years now, and it’s one of my favorite interprofessional activities. I love seeing the students connect with people in the community who are living with dementia and make these relationships.”
Perhaps the highest praise came from Bob himself, when he told us: “This right here — this visit — it’s better than chocolate!”
Photos by Autumn Driscoll