Meaningful Moments in the Most Unlikely of Times: Arts-Based Interventions and Dementia

I currently teach an undergraduate class on aging. Most of the students are not interested in aging per se, but take the course to fulfill a university requirement. Most, like many people in the larger community, have also not been asked to think deeply about aging or growing old. Recently, we read about life ending practices such as euthanasia (legal in some countries). I asked them to write about their stance including if or when such practices should be allowed. What shocked me wasn’t that most that were morally opposed to the idea of ending a life in general. I expected this. Rather, the shocking part was that despite their overall opposition, many argued that euthanasia was tolerable in some cases. As one student wrote, “If there is no chance of a patient getting better and medical resources are being used to keep them alive in a suffering state, then I believe that patients should have the option to die because that isn’t really living anyway. Resources could go towards patients who have a chance of a cure.” I realized then that I had failed them as a teacher, for what message I clearly didn’t impart to them was that meaningful moments can and do happen, even in the most unlikely of times. Dementia is one of those times when the potential for meaningful moments in life are overshadowed by the realities of decline. Alzheimer’s disease (AD), the most common type of dementia, has been described as “the long good-bye,” “a loss of self.” One of its hallmark characteristics, of course, is the inability to recall events, people and places that connect and orient us to our immediate communities of family, friends, and former selves. There are irreversible biological, psychological and social effects that leave many people with AD and their carers isolated. There is no cure. Despite years of research, the cause is still not understood; effective treatments have not been developed. These factors combined make life with AD, at first glance, seem like a life “that isn’t really living.” What is often overlooked, however, is the potential that still exists within the individual despite dementia, the potential for meaningful moments. I use the phrase “meaningful moments” to describe the flashes of joy and purpose, however fleeting or small, that I have seen in people with dementia participating in cultural arts programs such as Anne Basting’s “Timeslips” or Gary Glazner’s interactive poetry sessions. Cultural arts (e.g., dance, theater, poetry, music) can be been described as the practice of creating perceptible forms expressive of human feeling. These arts are concerned with creativity, imagination, and expression of feelings rather than some targeted outcome (e.g., improving cognition). Rather than remembering a person or place, the person with dementia reacts in the moment. In Timeslips he or she may imagine a story to describe a photo. In the poetry session, participants may think up a few words to describe what they would see if they were birds. Such cultural arts programs offer the opportunity for a person at virtually any point in their life to engage in a form of meaning making regardless of cognitive status or physical ability. Unfortunately, the cultural arts are often not taken seriously in the dementia world for several reasons. First, most dementia research examines the effects of targeted interventions on behavioral and/or cognitive disease symptoms within individuals, such as how a particular drug might improve one’s memory. Unlike such targeted interventions, developed a particular outcome in mind, cultural arts programs are developed with the overall goal of “meaning making” rather than measurable change, although such change is certainly possible. Using the same study designs to measure the effectiveness of a medication to measure the effectiveness of participating in the arts is not going to insightful findings. New study designs and analytical strategies are needed. After all, how does one measure a dose of poetry? Second, cultural arts aren’t confined to outcomes affecting one individual, as medications are. Instead, arts programs are often conducted in groups and therefore can “spill over” to others such as family members and, in the case of long-term care settings, other residents and workers. Such social interactions have been largely ignored in traditional dementia intervention research but hold tremendous promise for revealing the processes through which such programs impact health-related behaviors in individuals and groups. Third, a major reason that arts-based research is lacking is because arts-based research isn’t funded. With the majority of research resources being devoted to finding a cure (which certainly is of great importance), there are woefully few sources to fund good, empirical research on the arts. This is in part due to the bias of funders who are seeking “bench science” approaches to understanding dementia. This is also in part to the different worlds that artists, researchers and clinicians inhabit. Rarely have they come together to try to understand process and effect (e.g., What happens in a poetry session?), methods (e.g., What is the best design to capture whether this program is effective?) and measurement (What measurements are well suited to this type of intervention?). Until such studies are funded, it’s worth considering the untapped potential of the cultural arts in care settings and in the larger research world of dementia by reconsidering the key parts of my student’s statement. Will cultural arts programs cure dementia? No. Will participating in a creative storytelling group improve memory or help people with dementia get better? Probably not, at least not in the sense of reversing the disease. Yet, can these program help to alleviate a “suffering state” and can they give someone a moment of “really living”? Absolutely. Cultural arts programs can achieve what medication can’t: the opportunity for meaningful moments in the most unlikely of times. And just so you know, this will be on the next exam. Please join us for a teleconference on Combating Alzheimer's with Poetry and Storytelling on Wednesday, May 13, 3:00 p.m. to 4:00 p.m. ET. Participants include NEA Research and Analysis Director Sunil Iyengar, Kate de Medeiros, Gary Glazner of the Alzheimer's Poetry Project, and Anne Basting of TimeSlips Creative Storytelling Project, with moderator George Vradenburg of USAgainstAlzheimer's.  The teleconference is free and open to the public. You can register here.