Preparing for a theatrical performance:
Writing scripts and shaping identities
in an early dementia support group
Heidi E. Hamilton
Department of Linguistics
Georgetown University
LSA Summer Institute
28 June 2013
“Language and Aging” organized by Deborah Keller-Cohen and Loraine K. Obler
Language, Alzheimer’s Disease, and the Arts
Alzheimer’s
Disease
Language
The Arts
How can linguistic discourse analysis illuminate the therapeutic effects of
an arts program for individuals living with Alzheimer’s disease?
2
To Whom I May Concern®
Facilitator: So what we would like to offer to
you today is the possibility of meeting with us for
a few weeks. We’ll come at this time to ask the
question “What is it like to live with Alzheimer’s
or dementia or memory loss?” (March 8)
Theatrical performance in front of
audience
(May 10)
3
Introduction to To Whom I May Concern
4
Overview of presentation

Building blocks
–  Language and Alzheimer’s disease
–  Alzheimer’s disease and the arts

Research question at the intersection: How can linguistic discourse analysis
illuminate the therapeutic effect of arts programs for individuals living with Alzheimer’s
disease?

Illustrative case: To Whom I May Concern theater program
–  Description of project
–  Analysis

Discussion and closing comments

Questions
5
FOCUS: Language and Alzheimer’s disease
Alzheimer’s
Disease
Language
The Arts
6
Approaches to the study of language and Alzheimer s disease
The prism
The soliloquy
The dance
The couch
FOCUS: Alzheimer’s disease and the Arts
Alzheimer’s
Disease
Language
The Arts
8
Arts programming for individuals with Alzheimer’s disease
Intersecting with the scholarship on Alzheimer s
disease and identity is a robust movement in
innovative programming in the arts for
individuals with this disease.




Music
Writing of poetry and short stories
Visual arts
Theater
Proponents claim that these multi-sensory experiences are especially good
at promoting the social and creative wellbeing of persons with
Alzheimer s disease (see Basting 2009 and Ryan et al 2009 )
Public discourses regarding Alzheimer’s disease
Neuropsychiatric model with focus on
intellect and reasoning
Hypercognitive culture (Post)
Loss of self
Empty shell
A long goodbye
Individualized memory
Psychosocial model with focus on relational and
aesthetic aspects
‘Personhood movement (Kitwood)
Identification of active coping strategies and
lifting self-esteem
Beyond cognition
Beyond memories
Interactive memory
Linguistic spotlight on Alzheimer’s and the Arts
Through linguistic analyses of language
used by participants, we can gain insight
into the cognitive and social effects of such
programs.
Alzheimer’s
Disease
The Arts
11
Research question at the intersection
Alzheimer’s
Disease
Language
The Arts
How can linguistic discourse analysis illuminate the therapeutic effect of
an arts program for individuals living with Alzheimer’s disease?
12
Discourse explored: To Whom I May Concern®
-- an interactive theater project created by men and women who have recently been
diagnosed with dementia / in this case, 9 support group members, 2 support
group leaders, and 2 visiting project facilitators
Stories of living with dementia become the
script that is performed by those diagnosed in
front of an audience of their peers, friends, care
partners, and professionals.
To whom I May concern’s primary purpose is
to support the dialogue between people with
dementia and those that accompany them.
Maureen Matthews, RN, PhD
Founder, To Whom I May Concern
Participants in To Whom I May Concern® project
TWIMC Team Members
Support Group Leaders
Support Group Members
(institutional representatives)
Maureen (Founder/Playwright)
Abby
Alice
Lauren (Artistic Director)
Nadine
Amy
Fritz
Jim
Jane
Jessica
Marcie
Max
Sophie
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To Whom I May Concern® process
Four weekly support group discussions
involving 9 members, 2 leaders, and 1
primary facilitator
Facilitator transforms what is heard
into letters “To Whom I May Concern”
Three script reading and editing
sessions
One theatrical performance
in front of audience
15
Addressees of letters in the script
To Whom I May Concern

Dear Museum Docent

To My Dear Husband

Dear Breakfast Mates

Dear Doctors, Nurses, Social Workers

Dear Department of Motor Vehicles

Dear Chauffeur…I mean, loving wife
 Dear Access-a-Ride* (TODAY’S FOCUS)

Dear Doctor

Dear Potential Group Member

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What is Access-A-Ride?



Operated by New York City Transit
This ‘paratransit system’ provides transportation for people with
disabilities who are unable to use public bus or subway service for
some or all of their trips.
Service is available 24 hours a day, seven days a week, including
holidays.
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First reading of ‘Dear Access-A-Ride’ letter in practice
SCRIPT (as read for the first time by Alice)
Actually, this letter has to be censored out of respect for everyone present. Let me
just say the language is colorful, forceful, and very, very, frustrated! I’ll read the
cleaned up version.
Dear Access-A-Ride,
Where are you?
Why are you late?
Why do we have to go all over Queens to go two miles down the road?
WHERE ARE YOU?
I’m forced to depend on you. Why do you make it so difficult?
Signed,
Frustrated in New York
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Peeking behind the curtains: Personal experience
narratives in support group meetings
Why focus on personal experience narratives?
Explicit mention as part of the To Whom I May Concern process (i.e.,
‘stories of living with dementia…become the script’)
But also, critically, because of their known key connection to identity
construction (Schiffrin 1996, Capps & Ochs 1995; Bamberg 1997, 2011):
Telling a story provides a self-portrait: a linguistic lens though which to discover
people’s own (somewhat idealized) views of themselves as situated in a social
structure. The verbalization and textual structure of a story…provide a
view of self that can be either challenged of validated by an audience.
-Schiffrin 1996
Narrative discourse claims a special status in the business of identity
construction. In narratives, speakers typically make claims about
characters and make these claims (that are said to have held for a thereand-then) relevant to the here-and-now of the speaking moment.
-Bamberg 2011
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What is an Access-A-Ride Narrative?
A rider reserved a trip on Access-A-Ride and
something went wrong:
*The vehicle did not arrive to pick up the rider
*The driver left the pick-up area before finding the rider
*The driver arrived very late
*Once the rider got into the vehicle, the driver did
not know the directions and/or got lost on the way
to the desired destination
The rider took action(s) in response to the adversity
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Access-A-Ride mentions across the meetings
Support Group Sessions 1-4
Practice for Performance Sessions 1-3
1. No mentions of AAR
1. Alice asks to read AAR letter
2. No mentions of AAR
Facilitator Abby suggests adding
more details to letter
3. No mentions of AAR
Alice tells own AAR narrative
4. Max’s AAR narrative (1st telling) @ 32 mins.
Jane tells own AAR narrative
Max’s AAR narrative (2nd telling) @ 43 mins.
Marcie’s reflection based on AAR narratives
2. Alice reads AAR letter
Max arrives late to meeting and tells
new AAR narrative
3. Jim reads AAR letter
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Preview of analysis
Epistemic rights and authority (Raymond & Heritage 2006)
Agency (Ainsworth-Vaughn; Bamberg)
1. Agency within the interaction (storytelling world)
 2. Agency within the story world
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Agency within the story world: Bamberg (2011)
Sameness vs. difference (p. 104): “It is typically through discursive
choices that people define synchronically a sense of (an individual) self as
different from others or they integrate a sense of who they are in terms of
belonging to particular communities of others.” This can be overtly done,
but most often is “hinted at by way of covertly positioning self and others
in the realm of being talked about.”
Agency dilemma (p. 106): “Speakers either pick narrative devices that
lean toward person-to-world direction of fit, or they pick devices that
construe the direction of fit from world-to-person.”
**Self as actor: agentive self-constructer, strong, in control, selfdetermined
**Self as undergoer: low agency, less influential, less powerful, less
responsible
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Sample Access-A-Ride Narrative (simplified transcription)
1. One day I was going home with Access-A-Ride
2. and another person was in the car with me
3. and we’re on the Cross Island Parkway
4. and he doesn’t get off at Utopia Parkway.
5. He takes us for a ride.
6. And Utopia Parkway happens to be practically the last stop in..Queens.
7. And he’s taking..
8. And I..think to myself..which is the next exit? hhh
9. I said there’s another exit..the last one..the..
10. After you get on the..on the road going to the Whitestone Bridge.
11. So luckily I got him off that road.
12. Otherwise I would have been in the Bronx.
13. And they don’t know where they’re going.
14. I’ve got a better sense of direction than any of the drivers I’ve ever been with.
Alice, session 5, first practice
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Agency within Alice’s story world (see transcript)
Note the resources that Alice uses to position herself as being more in
charge than the Access-A-Ride driver(s): actions and thoughts attributed to
self that indicate her sound cognition and agentive problem-solving; ‘I got
him off’; negation in relation to the driver’s expected actions and knowledge;
negative adjective re cognitive abilities
Alice’s self-positioning
Alice’s positioning of the driver
He doesn’t get off at Utopia Parkway.
I think to myself, ‘Which is the next exit?’
I said, ‘There’s another exit- the next one’
So luckily I got him off that road…
Otherwise I would have been in the Bronx.
They don’t know where they’re going.
I’ve got a better sense of direction than any
Access-A-Ride driver I’ve been with.
They’re stupid.
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Agency within Max’s story world (see transcript)
Note the resources that Max uses to position himself as being more in charge than
the Access-A-Ride driver(s): actions and thoughts attributed to self that indicate his
assertive response to problems; sound cognition and judgment; negation in relation
to the driver’s expected sensible actions, knowledge and thought process (including
‘excuse’); negative referring term re cognitive abilities
Max’s self-positioning
Max’s positioning of the driver
Oh boy, did I have words with them this morning.
I got idiots who are drivers.
I can’t help it.
The driver, you know what excuse he gave?
He was there…
But he didn’t come to the other side and say ‘Is Mr.
Weinstein in there?’
So I had words with Access-A-Ride today.
It was a very exciting morning let me tell you.
(Nadine: For a man that was lost.)
I wasn’t lost, I knew what I was doing.
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Agency within the story world: Summary
Sameness vs. difference: Both storytellers use language to construct
very clear differences between the service providers (driver or AAR as an
organization) and themselves. These differences center (ironically, given
the symptoms associated with dementia) on cognitive issues such as ability
to reason and make clear judgments.
Agency dilemma: On the backdrop of the portrayed differences, both
Max and Alice construct identities for themselves as ‘actors’ rather than as
‘undergoers’
**Self as actor: agentive self-constructer, strong, in control, selfdetermined
**Self as undergoer: low agency, less influential, less powerful, less
responsible
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Discussion
So what have we learned about the discursive
underpinnings of the therapeutic nature of the To
Whom I May Concern program?
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Importance of the Access-A-Ride narrative

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The real-life experiences that spark these narratives are shared by other
members of the group (in contrast to narrative events that may be experienced by
only one individual; also in contrast to experiences that are shared by the
institutional representatives)
Following Norrick (1997), the resulting co-narration fosters group rapport,
ratifies group membership, and portrays shared values – all important activities
within a support group
The shared experience here is one of overcoming adversity in the form of
incompetence; the individual with memory loss positions him- or herself as
exercising better judgment/ knowing more than the service provider
This agency and knowing in the story world is important in the interaction with
others:
a.  Those who share this story delight in narrative co-construction
b.  Those who do not share the story gain some sense of the teller’s positive
sense of self in the world
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But.. agency in the story world only goes so far…
Dependence in the real world constrains these individuals’ next
steps. Positioning oneself as powerful and in charge in a narrated
event does not (necessarily) translate into power in the real world
Consider this exchange:
Nadine*:
Max:
You gotta call them and complain
Well yeah I’m afraid if you call them and
make too much of a fuss they’ll drop you
as a client. Then what? You gonna come
pick me up?
*one of two group leaders
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In fact, one can argue that this relative powerlessness
expressed by Max in the world outside the support group
actually accentuates the therapeutic importance of the To
Whom I May Concern program.
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The therapeutic nature of To Whom I May Concern
As script writer, Maureen Matthews transforms the personal
agency displayed by members in their personal experience
narratives into letters directed explicitly (but hypothetically) at
selected others represented in the story worlds.
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Key aspects of the transformative process (1 of 2)

The script writer shifts the text type (narrative to letter), speech actions
(representations of adversity to direct, face-threatening questions
addressed to an ‘other’) and participation framework (3rd person to 2nd
person); in these ways the agentive stance is amplified beyond the small
support group.
–  The hypothetical nature of these letters allows for catharsis with no
associated danger of negative real-world consequences for the members.

When fleeting conversational moments are transformed into physical
texts within the script, memory becomes less vital to the ongoing
interaction
34
Key aspects of the transformative process (2 of 2)
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
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The resulting letters in the script serve to crystallize members’ attention
and provide opportunities for communicative engagement (editing,
reflection, storytelling, etc.)
This collaboration within this process highlights the shared knowledge,
experiences, and values among group members – and facilitates rapport
and group bonding opportunities
Working in a systematic and supportive way toward a future live
performance helps members feel enthusiastic and optimistic as they
anticipate the fulfillment of their group’s common goal.
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Knowledge, emotion, control inside/outside the support group
CATEGORY
Public fears about
life with dementia;
perceptions of
symptoms*
Living life with
dementia outside
the support group
In support group
Knowledge
(epistemic stance)
fear of the unknown;
confusion,
disorientation;
difficulty
remembering
problems with
memory
have epistemic
rights and authority;
own experiences are
validated
Emotion (affect)
stigma, anger,
violence
frustration, anger,
embarrassment,
sadness
happiness, pride,
hope, sense of
belonging
Control (agency)
being out of control;
being a burden;
getting lost
dependence and
reliance on others to
accomplish everyday
activities, tasks
take charge of
interactions in
support group; show
agency in
represented events
(as referenced in
group)
* Basting 2009, Boustani et al 2006; Value of Knowing study 2011
Implications beyond the support group: (Re)shaping
public narrative?
People fear the lack of control that dementia entails. But taking
control of attitudes and care systems now can help us shape the
experience of dementia for those now and in the future. (Basting
2009: 155)
We suggest that arts programs like To Whom I May Concern can be
part of the vital process of (re)shaping the public narrative of
what it means to live with dementia.
In closing, back to the performance…
‘I’m more than my memory’: Voices from the group
The voices of the Greenlake YMCA Early Memory Loss Support Group
members in the final moments of their performance of To Whom I May Concern.
39
Questions, Comments, Discussion
THANK YOU FOR YOUR ENGAGEMENT!
hamilthe@georgetown.edu
THANKS…
…to my research assistant Marta Baffy of Georgetown University
…to Amelia Tseng of Georgetown University for her transcription work
…to the Georgetown Health Discourse Research Group
…to participants in the 2011 Dialogue and Dementia Workshop at Penn
State and the associated 2013 colloquium at the annual meeting of the
American Association for Applied Linguistics in Dallas
…and to Maureen Matthews, Lauren Volkmer, John Zeisel, and the
members and leaders of The Greenlake YMCA Early Memory Loss Support
Group!
41
Selected relevant works (1 of 2)
Ainsworth-Vaughn, Nancy. 1998. Claiming Power in Doctor-Patient Talk. Oxford University Press.
Backhaus, Peter (ed.). 2011. Communication in Elderly Care: Cross-Cultural Perspectives. London:
Continuum.
Bamberg, Michael. 1997. Positioning between structure and performance. Journal of Narrative and Life
History 7: 335-342.
Bamberg, Michael. 2005. Encyclopedia entries on ‘Agency’ and ‘Positioning’ in D. Herman, M. Jahn & M.-L.
Ryan (eds.), The Routledge Encyclopedia of Narrative Theory. New York: Routledge.
Bamberg, Michael. 2011. Narrative practice and identity navigation. In J.A. Holstein & J.F. Gubrium (eds.),
Varieties of Narrative Analysis, 99-124. London: Sage Publications.
Basting, Anne Davis. 2009. Forget Memory. Baltimore, Maryland: The Johns Hopkins University Press.
Boustani, Malaz et al. 2006. The PRISM-PC Questionnaire. Alzheimer’s and Dementia 2, no. 3: S567.
Capps, Lisa and Ochs, Elinor. 1995. Constructing Panic: The Discourse of Agoraphobia. Cambridge, MA:
Harvard University Press.
Chafe, Wallace. 1986. Evidentiality in English conversation and academic writing. In: Wallace Chafe and
Joanna Nichols (eds), Evidentiality: The Linguistic Coding of Epistemology. Norwood, N.J.:
Ablex.
Dubois, John W. 2007. The stance triangle. In Robert Englebretson (ed.), Stancetaking in Discourse:
Subjectivity, Evaluation, Interaction, 139-182. Amsterdam: Benjamins.
Hamilton, Heidi E. 1994. Conversations with an Alzheimer’s Patient: An Interactional Sociolinguistic
Analysis. Cambridge: Cambridge University Press.
42
Selected relevant works (2 of 2)
Hamilton, Heidi E. 1996. Intertextuality, intratextuality, and the construction of identity as patient in
Alzheimer’s disease. Text 16: 61-90.
Hamilton, Heidi. 2008. Narrative as snapshot: Glimpses into the past in Alzheimer’s discourse. Narrative
Inquiry 18: 53-82.
Hamilton, Heidi E. 2011. At the intersection of art, Alzheimer’s disease, and discourse: Talk in the
surround of paintings. In Peter Backhaus (ed.), Communication in Elderly Care; CrossCultural Perspectives, 166-192. Continuum.
Heritage, John. 1997. Conversation analysis and institutional talk: Analysing data. In David Silverman
(ed.), Qualitative Research: Theory, Method and Practice, 161-182. London: Sage Publications.
Matthews, Maureen. 2005. Weaving a Life: Five People with Early Stage Dementia Share their Stories.
Unpublished PhD dissertation. New York University.
Norrick, Neal. 1997. Twice-told tales: Collaborative narration of familiar stories. Language in Society 26:
199-220.
Polanyi, Livia. 1981. Telling the same story twice. Text 1: 315-36.
Raymond, Geoffrey and Heritage, John. 2006. The epistemics of social relations: Owning grandchildren.
Language in Society 35: 677-705.
Ryan, E.B., Byrne, K., Spykerman, H., & Orange, J.B. 2005. Evidencing Kitwood's personhood strategies:
Conversation as care in dementia. In B. H. Davis (ed.), Alzheimer talk, Text and Context:
Identifying Communication Enhancement, 18-36. New York: Palgrave Macmillan.
Schiffrin, Deborah. 1996. Narrative as self-portrait: The sociolinguistic construction of identity. Language
in Society 25 (2) 167-203.
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