Dementia Care

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Vol 5 No 3 June/July 2016 Australian Journal of Dementia Care 11
presentation of his ideas. The
‘language’ chapter, from
which I have already quoted,
offers a vivid demonstration of
the approach. It is built around
an individual known as Dr B.
This man was not a medical
doctor but a scientist, with a
strong interest in the arts. He
was 68 and tests assessed him
as having moderate to severe
dementia. Here is an excerpt
from Steven’s description of
their first meeting:
“Although he did grope for
words at times, the tone and
meaning of his sentences were
clear. ‘How long have you been
doing this work?’, he asked.
Suddenly, I was in the position of
explaining myself to him. So I
recounted to him a short history
of how I came to work with AD
sufferers. He asked about where I
attended graduate school and
when I graduated. The questions
did not come fluently, for he
had clear difficulty in finding the
right words to use, and this
resulted in protracted pauses in
his words from time to time. He
noted such instances by saying,
‘Bear with me’. Often, about five
minutes after I had answered a
particular question, he asked the
same question again and, once
again, I answered. I told him that
I was interested in learning about
the remaining abilities of AD
sufferers and that ‘If I can work
with you, maybe the results will
be helpful to people’. And so
began a nine-month odyssey of
cooperative research which soon
became known, in his words, as
‘The Project’ ” (Sabat 2001 p25).
This passage reveals much
about the approach and its
merits. Steven is honest and
straightforward in his
answers. He modifies his
conversational approach to
suit his subject. He offers his
partner a role in the work,
which is appreciated to the
extent that he dignifies it with
a name.
It contrasts markedly with
the conventional research
approach of using standard
tests to elicit information, and
to ignore the to-and-fro nature
of normal conversation. Here
is an example of a dialogue
between Steven (SRS) and Dr
B about the effects of
Alzheimer’s on his speech
when he becomes distracted:
“Dr B: When I leave something
with hiatus I think maybe I get, I
wouldn’t say disturbed, but it, it,
it screws up the rhythm.
SRS: Oh, so if you’re in the
middle of thinking about
something…
Dr B: Uh-huh.
SRS: And you get distracted…
Dr B: Yeah.
SRS: Then you lose what you
wanted to say?
Dr B: Yeah, but um, I can, uh,
wait for a little while.
SRS: Um-hum.
Dr B: And uh, I get rejuvenation,
and uh, up it comes.
SRS: So there are times when you
get distracted and you lose track
of what you wanted to say, but if
you wait a little while, it comes
back?
Dr B: Ya, it’ll sort of creeps in.
SRS: That’s really good – it’s
helpful to know that.
Dr B: What does it mean?
SRS: It means that you… (he
interrupts)
Dr B: Is this of any value?
SRS: Are you kidding? (said in a
gentle, supportive tone). Let me
tell you why it’s of value to me”
(Sabat 2001 p39).
So much is happening here.
First of all, it’s a real
conversation, with its
statements, questions,
answers, hesitations and
interruptions. And it has a
relaxed tone, so much so that
Steven’s “Are you kidding?”
doesn’t seem out of place.
Secondly, it is about a real
subject they both care about
and want to engage with.
Thirdly, it shows Dr B’s
awareness, not just of his
problem, but of the nature of
the task they have both
embarked upon: that breaking
in on Steven’s clarification
(one of a series he is
attempting) with whether
what he, Dr B, is saying is of
use to his companion, is of real
significance.
There is far more to be
learned about Dr B’s current
preoccupation, and his
communicative ability, from
this short passage than from a
dozen diagnostic documents.
Lessons learned
But something else of real
importance is going on here,
and that is to do with the
manner in which Steven
interprets his role. It is the use
that he makes of ‘indirect
repair’ which is so significant.
It is a term borrowed from
linguistics, and he defines it as
“inquiring about the intention
of the speaker, through the use
of questions marked not by
interrogatives but by
intonation patterns, to the use
of rephrasing what you think
the speaker said and checking
to see if you understood his or
her meaning correctly” (Sabat
2001 pp38-39). The effect of
this strategy is to reassure the
other person and help them to
retain focus and confidence.
Steven expands upon the
lessons he has learned from
such dialogic initiatives in the
following key passage:
“1. If I know that sometimes,
when an AD sufferer is
distracted while in the middle
of a conversation, he or she
might lose track of the present
thought, and
2. If I know that the afflicted
person might be able to retrieve
the thought after a short while,
3. I would know not to interrupt
the pauses during which the
afflicted person was trying to
retrieve the thread of
conversation because
4. The interruption would serve
only as yet another distraction
that would exacerbate the
problem and therefore
5. I would know that I should
give my afflicted interlocutor
more time to think before I
interrupted the thought
process with even so much
of a question as, ‘What did
you want to say?’”
(Sabat 2001 p40).
Selfhood
What Steven has brought to
the story of dementia stems
from social constructionism.
The positioning idea,
illustrated earlier in this
article, is one of the concepts
developed by that school.
Briefly, the approach is
concerned with selfhood, and
the various ways in which an
individual responds to
temporal, psychological and
social factors in the
environment. Insofar as a
person with dementia is
presented with challenges in
these areas, it has an obvious
contribution to make to
explorative studies of
communication. The means
employed is equally apposite:
the careful recording and
analysis of verbal interactions
to gain insights which can be
obtained in no other way.
In the following personal
communication to me earlier
this year, Steven expresses
eloquently his humanistic
philosophy, which makes him
the ideal exemplar for all who
wish to improve the lives of
those with the condition:
“To me, speaking with people
diagnosed has always been about
respecting them as people and
viewing them as being my
teachers. It has been my job to
play detective when necessary to
figure out what they are trying to
say… because I believe that they
are always trying to communicate
something. Indeed, it is exactly
what we do when we encounter
someone who does not speak our
language but is trying to do so.
We work with them to construct
meaning. Active listening is the
key and I believe that doing so
communicates honest interest and
respect and that people flourish
when they feel respected and
heard.”
References
Harré R, van Langenhove L (1999)
(Eds) Positioning theory. Oxford:
Blackwell.
Luria AR (1987) The mind of a
mnemonist. Cambridge,
Massachusetts: Harvard University
Press.
Sabat SR (2001) The experience of
Alzheimer’s disease: life through a
tangled veil. London: Blackwell.
Sabat SR, Harré R (1994) The
Alzheimer’s disease sufferer as a
semiotic subject. Philosophy,
Psychiatry, Psychology 1 145-160.
John Killick has worked
as a communicator with people
with dementia for more than 20
years, has edited six books of
poems by people with dementia
and written many articles and
books about person-centred
care, communication and
creativity. Contact him at: