Reflections on Improving the Quality of Life of Alzheimer’s Patients
November 21–22, 2014
University of Puerto Rico, Río Piedras
San Juan, Puerto Rico
After a decade of FRN’s summer seminars, I am a grateful veteran. Most experiences have exceeded my expectations from so many points of view: intellectual and social growth, experimental teaching approaches, bolder design for curriculum development to share with my Sagrado Corazon students and faculty.
The dialogue and debate with other participants has resulted in intercollegiate collaboration and in a branching out of research efforts. Witness the extraordinary camaraderie of the FRN lunchtime gatherings. One of my Sagrado Corazon colleagues, cinematographer Sonia Fritz, and I joined an animated round table discussion with participants from three other universities quite by chance two years ago. The topic being discussed when we pulled up our chairs was the use of the iPad as a tool for helping Alzheimer’s caregivers to connect with their clients through collections of family photos that captured important moments of their clients’ lives. Caregivers who did not know their clients could tap into the times when these retreating personalities led engaging lives. Some of the statistics regarding these patients are alarming: according to Brookmeyer, Johnson, Ziegler-Graham, and Arrighi, in 2007, the worldwide prevalence of Alzheimer’s disease was 26.6 million. By 2050, the prevalence will quadruple, by which time 1 in 85 persons worldwide will be living with the disease.
Inspired by both the discussion and the statistics, the idea caught fire. Professor Fritz and I returned home to Puerto Rico and launched our own research with the iPad and Alzheimer caregiving, adding music from the client’s era to enrich the family photos. We also added videos of anecdotes that family members recounted. Sagrado Corazon provided each family with an iPad that they could keep.
Our three-pronged approach revived the once active days of four carefully selected Alzheimer’s clients from different geographical and socioeconomic island homes. The music proved to be especially evocative. With perfect recall, two of the women sang the lyrics to romantic boleros of their high school days and recalled their novio/sweetheart’s flirtatious words. One of the women even ventured a dance step before her Alzheimer’s detachment again took over. Our yearlong project would never have begun without the FRN lunchtime roundtable exchange.
Next we involved our students; we interviewed and filmed each patient several times and programmed their individual iPads with their data. We encouraged the patients and their families to go back to special memories that their family photos and music stimulated. Their childhood, their school days, their courting days came to life, especially when accompanied by the music of their era. One song could bring back detailed memories of an evening from their adolescence, including dancing, flirting, and romantic conversations.
Slowly their families became even more involved with the patient by using the iPad. They no longer had to think of small talk to entertain their loved ones because the iPad, with its photos, music, and videotaped anecdotes, stimulated conversation with the patient and with other family members. A community began to form within each family and the iPad was their magic carpet back to memories.
At the end of the second year of work, we organized an assembly and presented the results of our research with 45 students participating in the presentation. This activity was Skyped to Pace University. Students from each of the disciplines spoke about their new awareness of Alzheimer’s in their own families. Many students expressed the pain of this realization, while at the same time acknowledging the help of this new technology, their portal to the past.
Both families and patients were enriched, united by recollections that the photos and music revived. Our students further expanded the project in several directions. Antonio Vantaggiato’s computer students refined the programming of the iPads and tutored each woman with gentle patience. It was quite a sight to see some of the young men and women bending down over the iPad and slowly explaining step by step the simple procedures to these four distracted, fragile women. These encounters bred an empathy with the patients that we didn’t foresee. The film production students also created remarkable bonds while visiting and interviewing the women. Slowly and tactfully they circled around the same question until they pieced together a whole answer from the fragmentary memories. One young man, Carlos, finished his interview with two of the women one afternoon and looked up and said, “Now I realize that my grandfather had Alzheimer’s for years before he passed away. I was so rude at times. I wish I could have understood what was going on when he asked the same question over and over again.” Perhaps it was this experience that made Carlos decide to pursue a Masters in scriptwriting.
My literature students wrote short scripts and poetry based on the impressions of the video interviews of these four women. Then one particularly reticent student, Miguel, came up after class and asked if he could create a dance triptych in mime tracing the three phases of the illness. His performance left everyone speechless; he portrayed an active, energetic dancer in the first phase; a dancer who suddenly forgot his routine and seemed disoriented in the second phase; and a dancer who gave up and fell to the floor in a fetal position in the third and final phase. Comments from the audience—both faculty and students—were testaments to experiences with Alzheimer’s devastating effects on family members they had dealt with. Other members of the audience cried quietly as they remembered the past and were moved by the collective experience, the many pieces of the project seeming to interlock and flow together effortlessly.
Sonia Fritz and I realized that this interdisciplinary project had become much larger than we ever anticipated, and had brought together students and faculty thinking about alleviating a social problem that plagues our global society.