RESEARCH ON COMMUNICATION
WITH AMYOTROPHIC LATERAL
SCLEROSIS (ALS) PATIENTS IN A
TOTALLY LOCKED-IN STATE:
INTERVIEWS WITH CAREGIVERS

KONAGAYA M1, KAWAGUCHI Y2 &
HASHIMOTO M3


1Tokyo Women�fs Medical University, Tokyo,
2Ritsumeikan University Graduate School of CoreEthics
and Frontier Science/ Master�fs course student, Kyoto, and
3ALS/MND Support Center of Sakura, Tokyo, Japan
E-mail address for correspondence: konagaya@nurs.
twmu.ac.jp


Background: Depending on the severity of the disease, an
artificial respirator can maintain life in ALS. However, as
the disease progresses, paralysis of all voluntary muscles
including those of the eye occurs, resulting in a totally
locked-in state (TLS). At present, a device that can
differentiate affirmative and negative responses based on
EEG or cerebral blood flow is available. However, training
to utilize this type of device is difficult, and only a handful
of patients can communicate through such mechanisms in
Japan.
Objective: The objective of the present study was to
gather cues to assist in communication with patients with
severe communication disorders by interviewing caregivers
of ALS patients in TLS.
Methods: A semi-structured interview was conducted
with six caregivers of four ALS patients in TLS, and the
contents of the interview transcripts were categorized in
order to extract related factors.
Results: Communication cues included such physical
reactions as tachycardia, increased blood pressure, facial
flushing, and perspiration. Caregivers interpreted these
reactions as signs of tension, anxiety, fear, and pain, and
also attributed importance to eye positions and slight eye
movements. Caregivers believed that patients were asleep
if their eyes were in a superior gaze position. Moreover,
they stated that although patients�f eyes did not move in
response to normal questions and interactions, they were
sure that either the eyes moved very slightly over a period
of time or that the lower eyelid contracted in response to
important questions regarding therapy or social activity.
Caregivers interpreted the volume of lacrimation, salivation,
and tracheal secretion as indicators of happiness,
sadness, and anxiety. Caregivers believed that they could
read facial expressions to indicate peacefulness, laughter,
and strong affirmation based on gaze; however, since these
signs lack objectivity, caregivers did not base their care on
their instinct and intuition.
Discussion: Due to limited verbal communication from
patients, caregivers focused on non-verbal communication
cues to ascertain emotions and patiently observed eye
movements in an attempt to communicate.

162 Poster Communication RESEARCH TO IMPROVE STANDARDS OF CARE