L6

ExproRrNG THE
CnsauvE PoTENTTAL
or PEoPLE \rITH ATzuEIMER's
DrsEasE ANo RnATED DnlrsNTIA
Dare to Imagine

Anne Dauis Basting

Nannanlvp THERAIIES can be enormously effective with people of all ages who
are able to follow a linear, narratiae structure. Because individuals with Alzheimer's
disease and related dementia (ADRD) are unable to conform to the linear aspect
ofthat structure, however, therapists are challenged to expand their understand-
ing of non-linear narratiae. Non-linear narrative is in the realm of poetry and ex-
perimental, artistic expression that has been recognized in the arts in various
florms for more than two centuries.
Gene Cohen (2000), author ofChapter 5, described creativity as the process
of bringing something new into the world that has value. To truly encourage cre-
ative expression, therapists and caregivers must give it enough value so that it is
taken seriously. The creative expressions of people with dementia, which, to ob-
sefvefs may mnge from the ridiculous to the sublime,-should not merely be cate-
gorized as the end products oftherapy, but recognized as art that can teach people
without cognitive disorders something about the meaning of living with ADRD.
35i
354 | Basting

$7hen memory fades and one's grasp on the factual building blocks of one's
life loosens, what remains? Is a person still capable of growth and creative ex-
pression even when demenria strikes? To answer these questions, I relay the story
of the Time.l lips Project. But first, some background is necessary. My work in cre-
ative expression began ]n 1996, when I experimented with a variety of creative
activities with people with ADRD. I worked in a wing of a long-term care cen-
ter, where the noises of blaring televisions, radios, and alarms and the adminis-
tering of medication made it exceedingly chaotic and difficult for both clients
and staff to concentrate. Despite these interruptions, however, after trying a se-
ries ofexercises, I found one thar worked consistently. Rather than ask clients to
reminisce, I asked them ro work together to make up a story from their imagi-
nations. Inevitably, clients would share fragments of memories. But the shift in
expectation-from asking them to retrieve memories to asking them to creare-
invited them to enrer the story with whatever sound, gesture, or morsel of lan-
guage they could summon. The storytelling process invited them to share their
strengths in symbolic expression.
As a playwright and scholar of avant-garde drama, I had few expectations of
linearity in narrative forms; I could follow rhe strands of their stories into faraway
places with multiple names in multiple times. The stories that developed from
my work were not about a linear narrative's beginning, middle, rising action, and
denouement falling into resolurion. They were about opening the rules of narra-
tive so that metaphors and images of the storytellers' fears and desires could find
a place for expression; they were about laughing, singing, and hearing the emo-
tional meaning behind garbled words. They were also about sraff, volunteers, and
family members relaxing their expectations and learning a new language in which
they could communicare with individuals with dementia. The groupt emphasis
in the storytelling circles was on an individual's creativity rather than memory.
This wasn't always an easy transition for participants to rnake: Throughout the
study, when facilitators first began working with a group of storytellers ro create
stories by asking probing questions, the participants usually relied on the default
expectation of memory. Even clients in the middle stages of ADRD are often
aware that their memories are impaired. W'hen parts of speech are beyond their
reach, they smile, gesture, and use kindly coaa pbrases such as "Do you think so?"
or "Oh yes; me too" to help them confidently answer all questions. "I don't
know," said most storytellers. "I used ro know, but I don't know anymore." The
facilitators encouraged the transition ro creativity by saying something like,
"You know what? I don't know either! $7e can make up whatever we want. \(/e're
making up a new story."
Our aim for the evaluation of the storytelling process was twofold: to look
for behavioral changes in the storytellers and to look for shifts in attitudes ofthe
student facilitators, staff, and primary family caregivers. I began the research
with the assumption that selfhood is relational and that improving the quality of
life for people with Alzheimer's disease is contingent on improving their rela-
tionships with those people who care for them.

I
 Exploring the Creative Potenrial of people with ADRD I ISS

In this chapter, I oudine the storytelling method thar resulted in the

TimeSlips project and my study of it; analyze the content of the stories; describe
interviews with staff, family caregivers, and student pamicipanrs; and discuss rhe
TimeSlips outreach program's effectiveness in changing public perception of
people with ADRD.

THE STORYTELLING METHOD

The Time.l/lpr storytelling method evolved out of a year of experimenting with a

variety of exercises in creative dramatics.l After espousing the virtues of theatri-
cal performance for older adults in my research on senior theater troupes across
the United States, I wanr'bd to see if "playing a new role" could benefit people
with ADRD as much as ir did older adults withour ADRD.
People with demenria have few meaningful social roles available to them.
ri7ith holes where memories of their children and spouses used to be, people
with ADRD often lose even a sense of the most basic roles held by individuals-
including partner, pareirr, sibling, or child. In creating the TimeS/lpr method, I
set about to establish a social role for people with ADRD-1[a1 of storyteller-
which would, in turn, provide access to meaningful self-expression.
After running a storytelling circle for 3 months in a long-term care facility,
I set up a research study ofthe storytelling method to test its effectiveness in four
adult day centers: two in Milwaukee, \Tisconsin, and two in New York Cicy. Al-
though the storytelling method has evolved since the research study began in
1998,I describe here the structure of the initial storytelling circles in these adult
day center test sites.

Tsr SrnucruRE oF THE SEssroN

The TimeS/lpr storytelling method followed a clear, ritualized structure. At least

once a week, a group of people with symptoms consistent with middle-stage
Alzheimer's disease gathered in a circle of chairs. My program assistant and I
trained undergraduate students from a wide range of disciplines (predominantly
in the humanities and arts) to facilitate the storytelling. Throughout this chap-
ter, I refer to students and staff as "facilitators" and the people with ADRD as
"storytellers." Students and staffworked together to encourage the storytellers to
respond to a picture the students brought in each week.
The storytelling circles began wirh a "welcome," in which the facilitators
introduced the activity and greeted the storytellers. $7ith the exception ofthe very
first session, facilitators would then tell a story that had been created by story-

rThe research phase of the TimeS lips Proiect received support from the Helen Badet Foundation,
Inc., the Fan Fox and Leslie Samuels Foundation, The Isaac H. Tuttle Fund, The Brookdale
Foundation, the Extendicare Foundation, BlueCross & BlueShield, the University ofrJTisconsin-
Milwaukee, and the Btookdale Center on Aging/Hunter College.
 316 | Basting

tellers the previous week to prove to the participants that they were indeed ca-
pable of creative expression. Next, facilitators handed out an image such as a
photograph or illustration to each member of the storytelling circle and asked
the group open-ended questions (avoiding "yes" or "no" questions). Facilitators
used a wide variety of images, but all of the images shared one characteli5liq-
they appeared staged or fantastical in some way. 'il7e avoided images of celebri-
ties or family photographs because we found that storytellers became too fixated
on the real story behind the image to freely launch into the realm of the imagi-
nation. The images guided facilitators in their choice of questions, which were
carefully worded to give the storytellers ownership of the story. Instead of " What
is this character's name?" for example, a facilitator asked, "\7hat would you like
to call him?" Questions focused on the sensory ("rVhat sounds do you imagine in
the background?") and on the wodd outside the environment depicted in the
picture ("Does he have a famlly?"). One facilitator wrote down all of the re-
sponses on a sketchpad large enough for all ofthe storytellers to see. All responses,
including any nonsensical answers, were validated and woven into the fabric of
the story.
The free-form storytelling process demanded that facilitators leave behind
preconceived notions of what constitutes a itory. If several storytellers responded
with names for a single character, that character had sev-
THr rnrs-ronr,r eral names. Events often took place in several places at
storytelling process once. Multiple plot turns created a meandering storyline
demanded that facilita- that read more like a chronicle of the storytelling process
tors leave behind pre- than a traditional, linear story with a clear beginning,
conceived notions of middle, and end, or one that focused on conflict and res-
what constitutes a slory. olution.
If several storytellers Because facilitators reassured the storytellers that
responded with names they could say anything they wanted to because they were
for a single character, making up a new story the facilitators often received
that character had answers that did not make sense to t\em. These nonsen-
several names. sical answers were of two kinds. First, some were clearly
meant to challenge the facilitators' promise that they
would accept any answer. \Dfe referred to these as "challenge" answers. In one ex-

change, for example, a facilitator asked for a name of a character and promised
she would accept any answer. A storyteller looked up at her slyly and said "Oh,
yeah? ABCDEFG." The facilitator wrote down the response and the name
'ABCDEFG" became part of the story. The second type of nonsensical ans$'er
was related to symptoms of ADRD. Several storytellers in each group had great
difficulty with language, for example. As the storytelling workshops proceeded
and they grew to trust the process, these storytellers would often respond by
adding fragmented words or sounds. Facilitators repeated these answers back to
them and wrote them down as best as they could to capture them. )
Facilitators re-read the story when they noticed the storytellers' attention
starting to drift. The telling of a single story often lasted up to an hour, but most
 Exploring the Creative Potential of.People with ADRD I lSl
, ,_
ran 30 minutes on average. In the final step in the ritual, as a way ro acknowl-
edge the risk and energy demanded by a full hour of creative storytelling, facili-
tators thanked each storyteller for his or her inpur.

THE OUTREACH PROGRAM

The second goal of the TimeSlips Project was ro share the stories rhat emerged in
the storytelling circles with the Bublic in order to increase awareness ofthe cre-
ative capacity of people with ADRD. \7e did this in several ways. First, the fa-
cilitators andTimeSlips staff created books of the stories told ar each center and
presented them to the storytellers and their families in celebrations held at each
facility. Second, in both Milwaukee and New York, a team of artists associated
with the project created a professional play production (with professional actors)
and an art exhibit inspired by the stories told in each city. Each performance of
the play was followed by a post-show discussion in which audience members
could share their reactions ro rhe stories and ask questions about the disease.
Third, we created a website that included stories from all four test sites as well as
detailed information about the history and aims of the project.

THE RESEARCH MODEL

\We received approval from the Institutional Research Board (IRB) at the
University of \Tisconsin-Milwaukee and secured consenr forms from all partic-
ipating staff, students, and family caregivers as well as assent forms from all par-
ticipants with ADRD. My assistant and I interviewed staff, students, and primary
family caregivers at the ourser of the project, in the middle of the storytelling ses-
sions, and again at the end of the project. N7e held the interviews in person or
over the telephone, depending on the interviewee's preference. The interviews
were "open-structure," loosely following our aim to assess their reactions to and
observations of the storytelling sessions without leaning on a prefabricated set of
questions. The responses rhar I share here retain the anonymity of the subjects.
Gender or other details of the respondents may be changed to protect their iden-
tity. In this chapter, I refer to the adult day center test sites as A and B (in Mil-
waukee), and C and D (in New York).
To test the outreach model, we received approval from the Hunter College
IRB. The main aim of this study was to test whether the art exhibit and/or play
production generated a change in audience members' perceptions of the creative
potential of people with ADRD. To address this, TimeS/l1s staff created an eval-
uation form and inserted them in each play program. A separate evaluation was
also available at the art exhibit. All responses were anonymous. Although we
held a play and art exhibit in Milwaukee, all responses were anecdotal. This re-
search, therefore, focuses on the New York play and art exhibit.
 358 | Basting

ANervsrs oF THE Sromns

sites yielded more than 100 stories.

All told, the storytelling workshops in all four
Some stories were only partially complete because facilitators tried to squeeze in
one more tale before the hour was over. I discerned the
Ar,rrroucn rns stories' main themes and noted rheir unique qualiries,
stories reflected the such as the prevalence of humor or nonsensical answers,
unique personality and Although the stories reflected the unique personality and
diversity of each story- diversity of each storytelling group, several themes
telling group, several emerged in all four groups,.including humor and the de-
themes emerged in all sires for freedom and human connection. I focus on indi-
four groups, including vidual groups first, and then turn to rhemes that appeared
humor and the desires in all four. I mainly refer to portions of stories. A full story
for freedom and human appears at the end ofthis chapter, and others are available
connection. on rhe project's website (www.timeslips.org).
CnNrnn A Storytelling workshops in Center A
featured a fairly consistent group of up to twelve enthusiastic participants who
regularly added songs and even dances to their stories. Ofthe 17 stories I ana-
lyzed, humor was a consistent theme in all of them, and eight of them featured
main characters who were happy, confident, and likable. These characters com-
monly encountered social obstacles, including the negative opinions of people
around them. The characters usually overcame these obstacles by remaining true
to themselves.
The most common theme was rhe desire for fsssdqrn-1e make decisions,
to be uninhibited, and to make choices. In "All the \(ay to Seattle," a woman
pilot flies "because it makes her feel free and because her family doesn't pay her
enough artention." In another story "Italians From Ireland Getting Their Inde-
pendence," the main characters are fighting for their "'lMil]\Taukean independ-
ence and they are doing what's right." The story's final line, "They got it right
where they want ir," asserrs the characters'power and freedom. In the story "Look
at Those Legs," a woman rides to church on an ostrich only to be ridiculed by her
fellow congregants. She overcomes this ridicule "because she is very sophisti-
cated," and leads the church in the song " Amazing Grace."
References to religion and spirituality were also common in this group. In
"I'm Glad You're Dead You Dog You," the two main characters are wrestling
over a picture of the Virgin Mary "because she symbolizes all that they desire."
In "She's Down There Under the Puppy," an elephant narned Grandfather is not
allowed ro enrer a church because he might break down the walls. He takes sol-
ace in his friendship with a little gid who is not afraid of his size, and together
they sit outside the church and listen to the choir sing "Atide with Me."
Another common theme that emerged was the desire for human relation-
ships, both platonic and intimate. Two main characters, in one story' two nuns,
were in love but couldn't remember with whom. Sexual innuendo and even ex-
plicit sexual references were common. In "Tiny Bubbles," the main character
lives underwater and is thinking about a woman he left on the shore. "He's think-
 Explqqng the Creative Potential of People with ADRD | 359

ing a whole lot about that woman," said a storyteller. In "It Goes Toot Toot,"
John Hibby and Bill Hobby and their wives "all fool around together." These
sexual references could make some participants uncomfortable. Rather than edit
the story however, which would run counter to our promise to the storytellers that
we would include all of their responses, we simply encouraged more responses.
Several stories from Group A dealt with difficult relationships. Some re-
flected disagreements between children and their parents. In one story, for ex-
ample, the children sharply disapproved of their parents' wrestling. Some stories
joked about traditional gender relationships; men would commonly take on
women's duties, as in "Ita'lians from Ireland," where eight women were fighting
for independence while their husbands were washing dishes.
The group at Center A was warm and suppoftive, comfortable with re-
sponding to the facilitators' questions with nonsensical answers. For example, in
"Everybody Is Eating Corn," a story ofa raucous dinner party at a restaurant, one
of the main characters is "allegering all over the horn."
Nearly every story at Group A featured a fragmented or '$7rrBN
REPEATTNG
nonsensical answer. But taken in the context of the story-
nonsensical answers in
telling circle, such answers had clear emotional resonance.
the retelling process of
Nfhen repeating nonsensical answers in the retelling
the storytelli og, factli-
process of the storytelling, facilitators aimed to capture
tators aimed to capture
the emotional intent behind the sound or words. the emotional intent
"Allegering all over the horn" was, in context, a clear ref-
behind the sound
erence to a joyful celebration at the dinner party.
or words.
CnNran B At Center B in Milwaukee, we worked
with a group of storytellers much more mixed in their
abilities than the group at Center A. Of the six storytellers at Center B, one sto-
ryteller had practically no verbal language at all. Because communication was
more difficult for this group of storytellers, the pace of storytelling was slower.
Several unique characteristics emerged in the stories created by this group, pos-
sibly due to the smaller size and slower pace, but certainly due to the strong Per-
sonalities of several storytellers. Although none of the 17 stories in Center A in-
cluded the names of storytellers, in Center B almost half of the 21 stories I ana-
\il7hen
lyzed included the narrie ofa storyteller or student facilitator as chatacters.
asked to name a character, some of the group's less verbal storytellers would point
to a fellow group member instead of naming the person directly. This drawing of
fellow storytellers into the tale was sometimes a gesture of intimacy, and at other
times, a gesture of friendly mocking. Either way, it always drew the group into a
deeper engagement with the process. Facilitators called out and emphasized the
storyteller's/character's name repeatedly with each retelling, acknowledging the
storyteller's presence, creativity, and new role (as character).
Nearly all of the stories ar Cenrer B contained challenge answers and answers
that sharply redirected what might be the assumed journey of the tale. The stories
generated by the Center B participants were less concerned with the direction of
the plot and much more focused on word play. "He's a Tuba Player," for example,
begins with "He's Tony the trumpet player from Thmpa, trying to get a tune."
360 | Basting

Tony's wife, whose name is "Music," is "rumored to be dead." In "Thanksgiving

Celebration," a story based on an image of a raucous dinner party storyrellers
named one couple "Pardon Me I Burped" and "Chades, \fho Is No Prince." rVhen
the check comes for the dinner party, "they'll sober up!" said one storyteller.
Although this group commonly used their own names as the names of char-
acters, they also tended to separate rhemselves from the storylines and, in turn,
from fellow storytellers. For example, in a story about a pancake-cooking club,
one storyteller said, "I wouldn't join that club." In "rValuing Ladders," when one
storyteller said, "Everyone is married and has children so rhey don't have parries
anymore," another countered with, "then I'm never going to get married!" \7hen
one storyteller added church music to a story, anorher countered with "No, that's
too holy."
In spite of their penchant for sharp wir, Cenrer B also created some re-
markably poignant images in their stories that seem to mirror their own feelings
and fantasies. To.y the trumpet player, for example, "should be 42, but he's 99.
He's happy, even though he's alone." In "rWe \fant to See Castro," a lirtle girl
goes to Cuba with an elephant. "She's gone far away," said one storyteller, "be-
cause kids do that." In response to an image of a man hiding his head in his coat,
storytellers named the main character "HeadlessJoe'Wonder," and said, "He lives
in a room of despair. He takes it as it comes. You think you can't do anything
without a head, but headlessJoe \Tonder can. . . "
CrNrrRs C aNo D The storytelling groups at both New York City cen-
ters fluctuated dramatically in size from week ro week. Center C had an average
of 10 storytellers; they ranged considerably in verbal skills, with rhe majority
able to put together two or three words. At Center C, the names of storytellers
found their way into the tales as they had at Cenrer B. But at Cenrer C, story-
tellers sometimes competed with one another to add their own names in the sto-
ries. In one story about a male painter and his female model, for example, two
women storytellers wanted to add their own names ro the name of the female
model. I7e included both and hyphenated the character's name. Similarly, in
"Mama Bear Does the Cha-Cha," Mama Bear is named after one of the story-
tellers. The story grew poignant as rhe storyrellers decided thatPapaBear was far
away having affairs, but that Mama Bear didn't just sit at home and mope.
"Mama Bear and the two cubs are at home, doing the cha-cha." The namesake
storyteller, confined to a wheelchair, would lead the group in a dance with her
arms with each rerelling.
The storytellers at Center C gave few "challenge" answers. Their stories
generally featured likable characters and were peppered with humor. The raucous
dinner party image was imagined to be 'John Gotri's birthday party," where the
characters were "eating diet food, because they are allfat!" In a story based on an
image of an older couple arm wrestling, storytellers said, "they are falling in love
for the first time." Similar to Group A, this group was also-.patient with non
sequiturs that emerged out of illness and acknowledged the contribution of the
storyteller who added them with each retelling. For example, one storyteller
 Exploring rhe Creative Potential of People with ADRD I Zet

could not or would nor answer more than "I don't know" Facilitators asked if
they could add this to the story and the characters, a group of women accordion
players, became the "I Don't Know" band. In anorher example, when asked if
there was music in a story about a man with a pigeon sirting on his head, one
storyteller enthusiasrically made up a song whose only word was "beep." To great
crowd approval, she energetically sang it with each retelling of the story.
Center D s group was very small but always had at least four participants.
The group was more physically and emotionally fragile than the others and more
linguistically challenged. One member could only add sounds interspersed with
occasional shards of words. Another storyteller had a remarkable gift for poetic
images, but struggled to stay awake and to tolerate multiple stimuli. Her srrug-
gle was evident in her input ro the stories; she often tried either to focus or si-
lence the group. "Every person has a story," she said, "there's not a human being
that doesn't have a story. But making ir mish-mosh is bad. It's like a bomb." In
other stories, however, her input served to encourage the group ro create power-
ful images. In a srory based on an image of a man sitring in an enormous pile of
books, they said "He is accepring responsibility to organize this into something.
He is orchestrating an orchesrra in his mind." In a tale about a can-can dancer
who works with an ostrich, they named her "Holding On, because she's really
just holding on." The story ended with Holding On contemplaring her career.
"She never had children, and she thinks she might have missed somerhing. Bur
she has a complex sense of happiness."
Non sequiturs were much more common at Center D, another small group,
than in larger groups where the increased amount of input meant storytellers
could edit themselves. In a story based on the image of the older couple
wrestling, one storyteller looked perplexed and said, "All I know is $Tinnie the
Pooh." After this response was woven into the story it became a favorite phrase
among the storytellers. Similar to the playfulness of rhe orher groups, rhe Center
D storytellers used the process to play with each other and wirh the staff. Their
humor was vivid. In "An Exquisite \(/oman," a woman pilot flies to Russia where
she eats "chicken Kiev in a box." In "A Horse Is a Horse of Course," a handsome
cowboy is "any age we want him to be . . . probably 28. And het atcracred ro
beautiful women like us!"

COMPARING AND CONTRASTING CENTERS

Clear differences and similarities emerged in the four storytelling groups. Led by
strong personalities of group members and by the size and nature o[the group
dynamics, groups ar Centers A and C yielded harmonious and playful srories,
whereas Center B challenged rhe process at every step, and Cenrer Dt srories
were powerful, dreamlike images pierced by sharp wit. As mentioned previously,
common themes emerged in all four groups, including the desire for freedom,
confidence, and intimate relationships. These desires were also evident in the group
 362 | Basting

dynamics, in which storytellers teased each other (and facilitators) by placing

each other in the stories, suddenly changing the direction.ofthe story, or delib-
erately adding humorous or provocative remarks. In all four groups, storytellers
engaged in the process as a method of self-expression,
IN an FouR GRouPS, whether they were attempting to contradict the flow of
storytelling provided the story or encourage its progress-whether they were
storytellers a valued so- challenging facilitators or sharing a poetic image. In all
cial role and rare access four groups, storytelling provided storytellers a valued so-
to meaning making for cial role and rare access to meaning making for people
people whose language whose language had broken down. Laughter and singing
had broken down. were a prominent part of all four storytelling grouPs as
well, so much so that staff who weren't directly involved
with the storytelling tended to gather at the edge of the room to listen to the ses-
sions. Cleady, the storytellers retained the capacity to entertain others and them-
selves with laughter, humor, and joy.

INrunvrrws: VoruNrEERS, STAFF, AND Feurrrns

The storytelling process and the stories that evolved from it show that people
with ADRD do have creative potential and can play valuable social roles. The
stories themselves can only tell us so much about the effectiveness of the work-
shops; however, interviews with staff, family caregivers, and students can help us
discern whether providing people with ADRD access to a meaningful social role
can shift the attitudes of people who care for them.
In Milwaukee, three students participated in the full 18 weeks of work-
shops, and five of them facilitated storytelling for 9 weeks. In New York, five stu-
dents facilitated the 9 weeks of sessions. All student facilitators were interviewed
in their first week in the program and again at the end. During the project, they
kept weekly journals of their feelings about the workshops. Interviews with stu-
dents were open stnrcture and focused on their pefceptions of aging, dementia,
and people with dementia.
Students in both Milwaukee and New York City revealed an initial feat ot
substantial hesitation about working with people with dementia. Several articu-
lated it as worfy that they might hurt the storytellers, physically or psychologi-
cally. One student who was studying aft theraPy had considerable knowledge
about dementia from gerontology courses but worried about her lack ofpractical
experience working with such a population. Only one student had worked with
people with dementia before and was faidy confident in her abilities. She, however,
was fearful of revealing her own disability (dyslexia) in the glodp. The student
volunteers had a high incidence of disability themselves. Of the 13 students, three
had dyslexia and another student was deaf. I can only speculate that they were es-
pecially drawn to a project that encouraged growth among people with cognitive
disabilities. But I can freely conclude that throughout the storytelling process,
all four remarked that they gained confidence in their own writing and creative
abilities.
 Exploring the Creative Potential of People with ADRD I Xl

After revealing an initial fear of working with people with dementia, the
student journals and final interviews show rhat studenrs were surprised ar how
much they enjoyed the sessions. They described the laughter and emotional con-
nection with the storytellers as "giving meaning to their day" and making them
feel as though they were "useful" and "important" in the storytellers' eyes. After
several weeks of storytelling, students commonly remarked that the storytellers
didn't seem to exhibit what they imagined to be symptoms of Alzheimer's dis-
ease. In their final interviews, rhree students shared their concerns that some of
the storytellers were misdiagnosed.
Three students wrote thar they felt hurt when the srorytellers didn't re-
member cheir names from week to week. If certain storytellers did seem to re-
member rhe students, they felt particulady accepted. But, two of these students
also wrote that if they were not remembered, it gave them as much satisfaction
to'feel that the storytellers trusted and accepted them in the moment. Two stu-
dents described their growing understanding that the product, the story itself,
was not the focus of the project, including this individual:

I think that at the beginning I was looking for the product. I was looking for
the good story to come our at the end. And it was so hard! Ve iust had to pull
and push and it was like nothing was happening. And then it kind of hit me
that we were not really rhere to get this good story. $7e were there to be with
these people and, you know, maybe appreciate them for being individuals. You
know it's to our advantage that we are there sharing with them their ideas and
wisdom and creativity.

The students became very attached to both the process and

Trre stuopNrs
the storytellers. By the end ofthe storytelling workshops,
became very attached to
they were all able to separate their fears of ADRD from
both the process and
their dissipating fears of the people who were diagnosed as
the storytellers. By the
having ic. After the initial, cautioLrs couple of weeks, the
end ofthe storytelling
students'body language, vocal tone, and energy level all
workshops, they were
grew as they interacted easily with the storytellers.
all able to separate their
Interviews that I conducted with staffat the four day
fears of ADRD from
centers revealed their surprise at the storytellers' creative
their dissipating fears of
abilities. Open structure interviews at the beginning and the people who were di-
the end ofthe process showed that staffgrew in their ap-
agnosed as having it.
preciation ofthe process and observed positive behavioral
changes in clients. Center B staff, were not directly in-
volved in the storytelling process but remarked in interviews that they regularly
read the stories and noticed positive changes in clients. One staffmember noted:

\We have a few people who are in the project who are very very quiet, and I'm
very happy to see them coming forward. The first couple of sessions . . . they
were very quiet and you really had to pull everything out of them and now I've
noticed that as each class has been happening, they are more and more oPen;
they'll talk openly and they're more comfortable. They are so happy after you
leave, and honestly, we can really get a lot out ofthem for the rest ofthe day.
364 | Basting

Staff at Center C were also not involved at the outset of the storytelling work-
shops. At first they were grateful for our giving them an hour to invest their
attention elsewhere. Afrer the third storytelling session, however, staff were in-
creasingly lured by the laughter and singing in our circle. In the final few ses-
sions, staffhad joined the circle, asking questions and laughing and singing with
us. Interviews with the two key staff members at Center C suggest two things:
that they were surprised by the quality of the stories and that they gained in-
sights into clients they hadn't previously imagined possible. One staff member
related:

'What they say, I mean, some of these stories . . . I gave them to lthe director of
the day centerl and she said, "Gee, these guys are smart! And funny!" And the
family members, [they] loved it. And I said, "See? That's what we're doing here
on Thursdays!"

Staff at Centers A and D were fully involved in the storytelling from the begin-
ning. They joined us in the storytelling circles on the first day and continue the
storytelling today-a loyalty that is testimony to their belief in the process.
Center A went beyond what we had hoped. The Time,l/l2l Project presented each
center with books ofall ofthe stories, inexpensively duplicated and spiral bound.
The staffat Center A took the initiative to put together (and pay for) three-ring
binders and plastic page protectors for high-quality duplications of each image
and its corresponding story. They invited the families of storytellers to attend a
parity at which staff presented rhe beautiful books to each storyteller and thanked
them for their contributions. As the storytellers reviewed their efforts with their
families, the party became quite moving. One storyteller took my arm and said,
"You know what's so great about this? It ain't cheap!" I knew just what he meant.
The books the staff created were works of art, giving honor and value to the sto-
rytellers' creativity. The Director of Center A, who was actively involved with the
storytelling sessions, offered these remarks:

Being an active participant in this TimeS/lpr Project, I have seen the joy that
the process has brought to the participants, the comfort that it has brought to-
families, the satisfaction and empowefment that it has brought to staff in-
volved. I am also impressed by the insight and awareness that it has brought to
the students, as they grow in their understanding of aging, disease, and [the]
development of humanness.

Interviews with family caregivers differed radically between Milwaukee and New
York. All but two storytellers in Milwaukee lived with family.2 The two lived in
long-term care programs and attended day centers for added social interaction.
In New York, the few storytellers who lived with family commonly had at least
part-time, paid attendants to care for them. Perhaps because of differences in the

2lnterviews with family caregivers were open structure telephone interview;, held in the first 3
weeks ofthe project and again at the end ofthe storytelling sessions. We also produced a series of
arrs events inspired by the creative stories, and interviewed families again after they had attended
the arts events. 1
 Exploring the Creative Potential of People with ADRD I XS

structure of care or because of the gaps in communication with the day centers,
only two of the family caregivers we interviewed in New York were aware of the
stories. Consequently, they had little input about changes in observed behavior.
Milwaukee families had a much greater awareness of the storytelling process
and its impact on the storytellers themselves. Of the 15 family caregivers we in-
terviewed in Milwaukee, the majority had read the stories either in the single
sheets we sent home each week or in the books of stories we presented the story-
tellers at the end of the project. Three family caregivers said they regularly read
I
the book with their loved one with ADRD. Two said they duplicated the books
and sent them to other members of the famr|y as a way for them to understand
and connect wirh the storyteller. One told us the storyteller had become posses-
sive of the book and hid it from her, calling it "his work." Four family caregivers
told us that they believed the storytelling made clear changes in their loved one's
behavior; for example, the individual initiated more conversation, exhibited less
confusion, and expressed an increased sense of enjoyment in life. Caregivers face
tremendous challenges cariog for someone with ADRD, not the least of which is
the adjustment to the change in roles the couples play. I find the fact that family
caregivers could find meaning and affirmation in the stories and the storytelling
process in the face of these challenges a testament to the power of creative self-
expression.

EDUCATIONAL OUTREACH:
CHANGING PUBLIC PERCEPTION
In Milwaukee and New York, the TimeS/zy'i Project sponsored art exhibits and
staged professional play productions inspired by the stories and characters cre-
ated in the storytelling workshops. Our aim was to improve audience members'
perceptions about the crearive potential of people with ADRD.3 In Milwaukee,
we collected anecdotal responses to the exhibit and play, but in New York City
we created a more official analysis of the educational outreach model. Analysis of
the New York data suggests that it is indeed possible to posirively affect public
perception of people with dementia.
The New York TimeSlips play was produced at an intimate (99 seats),
'We
downtown (off-off Broadway) theater known for innovative performances. se-
lected theater as a genre because the physical presence of the actor on stage can
create a sense of empathy with another human being in a way that film can not,
and because people with dementia exist in a fragile wodd that, like live per-
formance, disappears after the moment has passed. Our hope was to capitalize on
the intimacy of the space, the power of the present moment, and the potential for
empathy to engender a sense of empathy for people with dementia.
The play is set in an adult day center, where a small group of people gath-
ers in a creative storytelling circle. $feaving communal stories, they free them-

3The average age of audience members was 42. Bifty-eight percent had experience with demen-
7o of audience members came from an arts background,
tia, either personal or professional, and 37
while 2LVo came from health care fields.
 366 | Basting

selves from their private struggles with Alzheimer's disease to cfeate a wondrous
world inhabited by fantastical characters that take on a life of their own' A can-
can dancer conceals the long legs ofan ostrich beneath her skirts, a singing cow-
boy serenades his devoted horse with song, a determined swimmer battles the
Hudson River to break a world record, and a bookworm
Tnnoucn rHE sroRY- struggles to liberate himself from a mountain of books.
telling process, these Through the storytelling process, rhese fragmented per-
fragmented personali- sonalities band together to help each other complete their
ties band together to journeys even as memory fails their authors.
help each other com- \7e inserted evaluation forms in each play program
plete their journeys in New York and allowed time after the show and before
even as memory fails a post-show discussion for audience members to complete
their authors. the forms. \(/e received 539 responses over the course of
20 performances in 3 weeks. We asked a series of general
questions to ascertain audience members' ages, occupations, and their experience
with dementia. \7e also asked a series of questions directly about the play, in-
cluding a request for a description of the play's theme. The most common re-
sponse (34Vo) was "self-expression," or "expression of an inner-life." Next, we
asked people if , befmeviewing the play, they thought people with dementia could
express themselves creatively, with 1 beiig not at all, and 10 being quite uell. The
response was 6.3 , which fell in the range of the area that we described on
^venge
the form x somewhat, In the next question, we asked f , after viewing the play,
they thought people with dementia could exPress themselves creatively. The av-
erage response was 8.2. We analyzed the before and after fesponses according to
differences in age, experience, occupation, and the date of the performance. Age
did have an impact on people's responses, but the impact was barely significant.
'We
found that younger audience members were slightly mofe optimistic in
terms of recognizing the creative potential of people with dementia. Each age
group's rating went up approximately two points from before to after, but
younger audience members had given a higher initial score, indicating that they
aheady had higher expectations when it came to the creative abilities of people
with ADRD.
Those with expefience with dementia (personal or professional) were more
positive than were people without experience with dementia in their initial views
of the potential of people with dementia to express themselves cfeatively, yet the
attitudes of those without experience changed overall mofe than did those with
experience. The differences, however, were weak, and the play had a significant
impact on every group.

Tlru Anr Exnrnrt

The art exhibit in New York City featured two-dimensional silhouettes of char-
acters, some as large as 12 feet tall, from the stories that emerged in storytelling
workshops. The story itself was handwritten on the figure, so viewers could read
it in its entifety. Evaluation cards were displayed prominently in the exhibit, but
in spite of high attendance, only a smattering of people completed cards and

-d
 Exploring the Crearive Potential of People with ADRD I Xl

dropped them in the evaluation box. The results were similar ro what we found
in the play. Of those who responded, approximately half had had experience with
people with ADRD,-yet all showed positive change in rheir perception of the cre-
ative ability of people with ADRD. The small number of evaluations makes it dif-
ficult to generalize the results or to compare them with the results of rhe play
evaluation cards.

SUMMARY

Creative storytelling supplies a social role, one wirh value that allows for the in-
cegration ofpast and present and that acknowledges the strengths and potential
of the present lives of people with ADRD. It offers storytellers an avenue for self-
expression that frees them from the demands of memory and rational language
that they can no longer master. Creative storycelling can reorient the expecrations
of professional caregivers to recognize new and untapped strengths of their
clients including capacities for humor, creative imagination, and social skills. It
offers staffan enjoyable activity that can also help them develop their creative po-
tential. It offers student volunteers an opportunity to separate their fears of
Alzheimer's disease and aging from the people with whom they associate them
and can be a first step toward encouraging young people to consider working or
volunteering with older adults. S7here broken communication skills fracture re-
lationships with family caregivers and their extended families, creative story-
telling can provide a way for individuals to forge new relarionships chrough po-
etic and openly symbolic expression.
Perhaps because most people assume that people with Alzheimer's disease
have no meaningful present, caregivers tend to encourage them to rernember the
past and underestimate their remaining strengths. Although I believe reminiscence
work can be very effective and fulfilling for people wrestling with early stages of
ADRD, it can lead to frustration and even shame among people in middle stages,
whose ability to gain access to and concrol language and memory can be severely
impaired. As caregivers, shifting our focus from memory to creativity can open
channels of communication with people with ADRD and offer both client and
caregiver potencial for growth and the exercising of strengths. Sharing the cre-
ative products of people with dementia in a respecdul way can be very effective
in raising public awareness about the creative capacity of people with dementia.
This two-pronged approach, changing the mindset and actions of caregivers di-
recrly and assuaging public fear of the people who have ADRD, is a certain step
toward the culture change so needed to help these individuals and those who care
for them to have fulfilling lives.

REFERXNCE

Cohen, G. (2000). The reatiae age: Awakening buman potential in the suond balf of
life. New York: HarpeCollins.