Grand Rounds

Thomas L. Bennett, Editor

George: Learning to Live Independently

With NeuroPage®
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
This document is copyrighted by the American Psychological Association or one of its allied publishers.

Barbara A. Wilson
MRC Cognition and Brain Sciences Unit and Oliver Zangwill Centre

Hazel Emslie, Kirsten Quirk, and Jonathan Evans

Oliver Zangwill Centre

ABSTRACT. The authors report the case of George, a young man with very severe
memory impairments after a head injury sustained in a road traffic accident several
years earlier. George was one of 200 participants in a study evaluating NeuroPage®,
an electronic memory aid. Like many other participants in the study, he responded
well to NeuroPage® and was able to live independently with the new memory aid.
Using an ABAB single-case experimental design, the authors show his response to
the pager, describe his feelings about it, and consider reasons for its efficacy. It
would appear that NeuroPage® is effective because it is easy for patients with brain
injuries to use, the messages are relevant, the prompts appear at the time needed, and
using a pager is prestigious.

Much of the work in memory rehabilitation involves teaching people to compen-

sate for their impairments by using aids such as diaries, tape recorders, organizers,

Barbara A. Wilson, MRC Cognition and Brain Sciences Unit, Cambridge, United
Kingdom and Oliver Zangwill Centre, Ely, United Kingdom; Hazel Emslie, Kirsten Quirk,
and Jonathan Evans, Oliver Zangwill Centre.
This work was supported by a grant from the Anglia and Oxford Regional Health
Authority Research and Development Initiative.
We are grateful to Larry Treadgold and Neil Hersh for providing us with the software to
run NeuroPage®; to Philips and Hutchinson (United Kingdom) for supplying the pagers
used; to Lifespan NHS Trust, where the NeuroPage* system is based; and particularly to
George, his parents, and his carers for cooperating in the study.
Correspondence concerning this article should be addressed to Barbara A. Wilson, OBE,
MRC Cognition and Brain Sciences Unit, Box 58, Addenbrooke's Hospital, Cambridge CB2
2QQ, United Kingdom. Electronic mail may be sent to barbara.wilson@mrc-cbu.cam.ac.uk.

284
Rehabilitation Psychology, 1999, Vol. 44, No. 3. 284-296
Copyright 1999 by the Educational Publishing Foundation, 0090-5550/9943.00
 George: Learning to Live Independently 285

computers, and so forth (Kapur, 1995; Wilson, 1995). Work in this area of
rehabilitation is complicated by the fact that remembering to use a compensatory
memory aid is, in itself, a memory task. Thus, the people who need external aids
the most have the greatest difficulty with them. They forget to use them, they
cannot learn how to program them, they may use them in a disorganized or
unsystematic way, and they may be embarrassed by them.
One recently developed aid that avoids many of these problems is Neuro-
Page®, a simple and portable paging system with a screen that can be attached to a
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This document is copyrighted by the American Psychological Association or one of its allied publishers.

waist belt. NeuroPage® was developed in California by Larry Treadgold, the

engineer father of a son who had experienced a head injury, working with Neil
Hersh, a neuropsychologist (Hersh & Treadgold, 1994). NeuroPage® uses an
arrangement of microcomputers linked to a conventional computer memory and,
by telephone, to a paging company. The scheduling of reminders or cues for each
individual is entered into the computer, and, from then on, no further interfacing is
necessary. On the appropriate date and at the appropriate time, the reminder is
transmitted to the individual. All the individual needs to learn is to press a button.
We began collaborating with Hersh and Treadgold in 1994 and, since then,
have been evaluating the system in the United Kingdom. In one study (Wilson,
Evans, Emslie, & Malinek, 1997), we showed that the mean percentage of targets
achieved during the baseline phase for a group of 15 people with brain injury was
37.08; during the treatment phase, this rose to 85.26% of targets achieved. This
difference between baseline and treatment was significantly greater (p < .05) not
only for the group as a whole but also for every individual within the group. Each
person achieved a significantly higher number of targets with the pager than
during the baseline. Once the pager was removed during the second phase, the
mean percentage of targets achieved was 74.74. For some participants, this
represented virtually no decline once the pager was removed. These participants
had learned to take their medication or to check their diaries or whatever their
messages had prompted them to do. Other participants returned to or near baseline
levels once their pagers were removed. These results suggested that, for some
people, NeuroPage® can be used as a short-term measure to teach routines,
whereas other people may need the pager on a long-term basis.
In 1998 we reported in detail the case of RP, who was one of the people in the
original study and who required NeuroPage® on a long-term basis. RP was not
severely memory impaired but had a dysexecutive syndrome with marked
problems in planning, organization, and attention (Evans, Emslie, & Wilson,
1998) and continues to need NeuroPage® on a long-term basis.
Following on from these successes, we decided to replicate the findings with a
group of 200 people with memory and executive problems, including people with
an even wider range of memory and executive deficits than those in the original
study. The present study is still in progress. Many of the clients recruited have
extremely severe problems and are often referred to us in desperation when other
rehabilitation strategies have failed. George, the case we report here, is one such
person.
 286 Wilson, Emslie, Quirk, and Evans

CASE REPORT

We first became aware of George when his parents wrote to us, having seen our
NeuroPage® study featured on a national television science program. They wrote
in April 1997:
Our son was seriously injured in a road traffic accident seven years ago and suffers
short-term memory problems due to brain stem injury and frontal lobe injury. He is
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unemployed but does sheltered work in a library two mornings a week. He is in the
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process of moving to his own flat with 24 hour support workers and it is hoped that his
support will be gradually reduced after a 2-3 month period. We feel this pager could be
the answer to many of his memory problems.

George was 23 years old at the time and had sustained his head injury at the age of
16 years. We were unable to obtain detailed reports, although one neuropsycholo-
gist who had seen him indicated that "he has attentional weaknesses of memory
as part of a dysexecutive syndrome. He receives support in the community from
members of our outreach service."
George and his parents came to discuss NeuroPage® and agreed to enter him in
the study. We administered the short battery of tests that is given to everyone in
the study (the number of tests being constrained by the large number of people
entered into the study and the limited time available). These tests appear to give
an adequate picture of the client's current functioning. Previous work has shown
that careful selection of clients is not particularly crucial, and one of the strengths
of NeuroPage® is its suitability for a wide range of people and problems. The
results from our assessment of George were as follows:
1. Speed and Capacity of Language Processing Test (Baddeley, Emslie, &
Nimmo-Smith, 1992): Spot-the-Word, age-scaled score = 12 (bright average);
Semantic Processing test, age-scaled score = 12 (bright average).
2. Modified Six Elements subtest of the Behavioral Assessment of the Dysex-
ecutive Syndrome (Wilson, Alderman, Burgess, Emslie, & Evans, 1996): number
of tasks attempted, 6; number of rules broken, 0; profile score, 4 (maximum
score).
3. Map Search subtest of the Test of Everyday Attention (Robertson, Ward,
Ridgeway, & Nimmo-Smith, 1994): map search (1-min score), age-scaled score,
9; map search (2-min score), age-scaled score, 7.
4. Rivermead Behavioural Memory Test (Wilson, Cockburn, & Baddeley,
1985): screening score, 3/12 (severely impaired); modified profile score, 8/24
(severely impaired).
We interpreted these results as suggesting that, premorbidly, George was of
above average intelligence, his current speed of information processing was good,
and he showed no obvious signs of a dysexecutive syndrome. His attentional
skills, as assessed by the Map Search subtest of the Test of Everyday Attention,
were below what one would expect from someone of his basic ability, and there is
some suggestion that he has problems maintaining attention for more than a short
period. There was no doubt, however, that his main problems were with memory.
 George: Learning to Live Independently 287

and he scored in the severely impaired range on a test of everyday memory

functioning.

George's Entry Into the Study

In the main ongoing study, each client—when possible, accompanied by a

family member or a caregiver—has a 2-3-hr consultation during which the study
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is explained, the pager demonstrated, a draft list of messages elicited, and the
neuropsychological tests administered. If the client expresses a wish to take part
and this participation is considered beneficial, the client is enrolled in the 16-week
study.
George, his parents, and his newly appointed carer were invited to a meeting
where the structure of the study was explained in some detail. George was then
asked to respond to three or four test messages to determine whether he could
remember which was the appropriate button to press, how often he needed to
press this button to display the current message, and whether he would understand
how to scroll back to previous messages. The trial messages also served to
confirm that George's vision was sufficiently good for him to read the text on the
screen and to check that he could integrate information across successive
displays, something he would need to do if he wanted lengthy messages.
Discussions followed about the kinds of everyday problems faced by George.
The researcher led him through a typical day, gradually eliciting information
about the difficulties he was having that the pager might reduce. As each problem
was raised, the researcher suggested how the pager might be used to overcome
these problems. For example, when George said he did not always know what day
it was when he woke up, it was suggested that he might like a message such as
"Good morning George. It's 7 o'clock on Monday."
His parents and carer were directly involved only when George himself said he
was unsure about something and turned to them for help or when the researcher
could see from their facial expressions that what George was saying was not
wholly accurate. When this occurred, the researcher said something like "Do you
mind if I ask your parents or your carer if they have any suggestions here?"
Throughout the consultations, care was taken to make it clear that George was
the important one there, that it was what George wanted that mattered. The final
decisions about what messages were to be sent and the time of transmission were
always his. In all of our NeuroPage® work, we consider the wording of the
messages to be important; some clients like a short abrupt message such as "Do
ironing now," whereas others prefer this worded as a question: "Would you like
to do your ironing now?" We believe that clients should not only choose the
messages they want transmitted but also choose their own wording. The basic
messages to be transmitted were thus established with George and his parents.
These messages can be seen in Table 1. George's parents were also asked to
complete a modified version of the Caregiver Strain Index (Robinson, 1983) at the
beginning, in the middle, and at the end of the initial 16-week trial.
 288 Wilson, Emslie, Quirk, and Evans

Table 1. NeuroPage® Messages Sent to George: Two Typical Days

Time Message
Monday
7:15 a.m. Time to get up
7:25 a.m. Up yet? Time to wash and shave
7:40 a.m. Take tablets and fill in the time on the checklist
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3:00 p.m. Fold washing and put it away

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5:00 p.m. Prepare the evening meal

6:20 p.m. Swimming tonight?
8:30 p.m. Read through today's notes
9:00 p.m. Take tablets and fill in the time on the checklist
Tuesday
7:00 a.m. Time to get up
7:10 a.m. Up yet? Time to wash and shave
7:25 a.m. Take tablets and fill in the time on the checklist
8:30 a.m. Remember keys, wallet, and diary
5:00 p.m. Prepare the evening meal
8:30 p.m. Read through today's notes
9:00 p.m. Take tablets and fill in the time on the checklist

Of the weekly messages to be transmitted, seven (which were to be the target

behaviors) were monitored throughout the initial 16-week study: (a) starting to
prepare a meal at 5:15 p.m., (b) remembering keys and so forth, (c) reading the
day's notes, (d) doing everything he wanted to do, (e) putting tablets on the table,
(0 filling in the questionnaire, and (g) folding the laundry. Once a list of messages
had been drawn up (the average number of messages per day was six) and target
behaviors agreed on, a daily questionnaire was devised that George was to fill in
with help, if needed, from his carer. George was then ready to enter the study.

Procedure and Data Collection

The basic research design is a crossover design. The first 2 weeks are spent
collecting baselines; then clients are randomly assigned to one of two groups: One
group has a pager for 7 weeks, and the other group is on a waiting list for 7 weeks.
Following this, the waiting list clients are provided with a pager, and the clients
who were given the pager immediately after the baseline return their pagers. As
mentioned previously, basic assessments to estimate premorbid IQ, together with
memory, attention, planning, and organizational skills, are carried out shortly
before the 2-week baseline. The daily questionnaire, the targets in which are
unique to each client, is completed by either the client or a carer during the 2-week
baseline (Time 1), during Weeks 6 and 7 with the pager or on the waiting list
 George: Learning to Live Independently 289

(Time 2), and during the last 2 weeks with or without the pager (Time 3). The
percentages of target behaviors successfully achieved are then calculated for these
three 2-week periods.

Results

George was assigned to the group given the pager immediately after the
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baseline. Thus, we have data for him from the 2-week baseline, from his final 2
This document is copyrighted by the American Psychological Association or one of its allied publishers.

weeks with the pager, and from Weeks 6 and 7 after he had returned the pager.
For most (five) of the seven targeted behaviors, George was significantly more
successful with the pager than he had been in the pre-pager period. For example,
beginning to prepare a meal at 5:15 p.m. increased from a 50% success rate in the
baseline to a 100% success when he had a pager. The same was true of putting the
tablets on the table, which went from a 0% success rate to a 100% success rate.
Remembering to take keys and so forth with him when he went out was something
his parents had stressed and turned out to be something he worried about
forgetting rather than something he actually forgot: The success rate here was
100% in both the baseline and treatment phases. Folding and putting away his
washing was a new target for him and one he believed would demonstrate his
independence. This increased from 20% in the baseline to 86% with the pager.
In the posttreatment phase, George maintained his success rate for some
behaviors (e.g., putting his tablets on the table) and continued to increase his
success rate with other behaviors (e.g., folding and putting away his washing and
filling in the questionnaire). For other behaviors, however, such as beginning to
prepare a meal, reading the day's notes, and doing everything he wanted to do that
day, he was even worse in the posttreatment than in the original baseline phase.
The results can be seen in Figure 1.
The apparent decrease in success between the baseline and pager stages for
Target 6 (filling in the questionnaire) was in fact an error on our part. The prompt
to fill in the questionnaire was meant to go out daily but was inadvertently
omitted. The total percentage success rates for all seven targets was 46.1% at
Time 1, 79.1 % at Time 2, and 70% at Time 3. If we exclude Question 6 (filling in
the questionnaire), in which we forgot to send the message, the figures are as
follows: Time 1, 48%; Time 2, 87%; and Time 3, 70%.

Discussion of Results of the Initial Study

On the whole, George was more successful with the pager than in the baseline
phase. When the pager was provided, George was preparing his meals on time,
doing more of the things he wanted to do, and folding (and putting away) his
laundry. All of these behaviors were identified as enabling him to be more
independent. Although George said he needed a reminder to take his things (such
as his keys) with him when he went out and asked for messages about this, he was
actually managing to do this in the baseline phase.
 This document is copyrighted by the American Psychological Association or one of its allied publishers.
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290

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 George: Learning to Live Independently 291

When George's performances in the treatment (pager) and posttreatment

phases are compared, however, it can be seen that for four of the seven targets, his
success was not maintained. In some cases, his performance was actually lower
than in the original baseline. We would argue that this is not because the pager
made him worse but because he was doing a great deal more by the end of the
16-week trial than he was at the beginning of it. In addition, George's priorities
changed to some extent over this period; for example, it was no longer so
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important for him to have his meal at exactly the same time every day. Thus,
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although he answered no to the question about preparing his meal, this was not
because he was forgetting to prepare a meal; rather, it was because he was busier
in the afternoons and so was beginning it after 5:15 p.m.
For three target behaviors, however, George's success rate was maintained
once the pager was removed and he was able to benefit from the routines
established. Putting the tablets on the table, for example, was a very important
routine to be learned because no messages could be transmitted on a Saturday (the
Sabbath) owing to the fact that George was an orthodox Jew. Filling in the
questionnaire, we think, increased posttreatment because it directly connected
with the research trial, and he was proud of his improvement and keen to record it
objectively.
It is possible that had George had the pager for longer than 7 weeks, more
routines might have been established. It will be remembered that, in the original
study, participants were given the pagers for 12 weeks, and for these participants
the falloff in success rate during the postbaseline phase was small. On the other
hand, the people in the original study tended to be less severely impaired than
many of the ones in the present larger study.

Modified Caregiver Strain Index

It will be remembered that George's parents were asked to complete this

questionnaire before and after using the pager. George's mother completed and
returned the questionnaires. Although the original Caregiver Strain Index (Robin-
son, 1983) is a short, reliable, valid measure of carer strain, we found in earlier
studies that it was not sensitive to changes in the families of our clients with brain
injury. This is because each item is scored yes or no and thus does not capture
small, subtle changes. Consequently, we modified the scale so that each item
could be rated from 0 (never/not at all) to 10 (always/very much). George's
mother rated herself as much less distressed at the end of the 16 weeks than at the
beginning. These results can be seen in Table 2.

Longer Term Provision of NeuroPage® for George

Two months after the end of the 16-week trial, George's mother called to ask
whether a commercial NeuroPage® service was available. It was not available in
 This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

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 George: Learning to Live Independently 293

Table 3. A Typical Day's NeuroPage® Messages at the Beginning of George's

Independent Living
Time Message
8:20 a.m. Take your tablets now. Check your rota for week A
8:30 a.m. Would you like to read?
9a.m. DoyourADLS
12:30 p.m. Time to leave and lock up (Building Society, buy bus pass, pay
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paper bill). Switch off lights. Switch on answer phone.

Remember to take your money, keys, bus pass, and Building
Society book
1 p.m. Put your Building Society book away. Check messages and
switch off answer phone
3 p.m. Plan week's meals. Compile a shopping list and go shopping
6 p.m. Prepare your evening meal
7 p.m. Would you like to choose an option? Swim, social, physio, read
8 p.m. Are you hungry yet?
9 p.m. Watch the news now, or read over notes
9:35 p.m. Lock up
9:40 p.m. Take tablets now
9:45 p.m. Prepare for bed
Note. ADLS = Activities of Daily Living Schedule.

the United Kingdom at the time, although one is being established in July 1999.1
However, as George was about to move into his own apartment, we believed that
it would be a good research opportunity to put him on an extended 3-month trial to
determine whether we could establish new routines to enable him to pursue his
goal of independent living. At this stage, it had been decided that George would
have two carers providing 24-hr care. He wanted to be more independent and sent
us a long handwritten list of messages he wanted transmitted on NeuroPage®. Not
only were there many more messages than previously (up to 20 a day, with an
average of 14), but some of the messages he requested were very lengthy; for
example, the 12:30 p.m. message on Monday included all of the following
information: where he was going, what he needed to take with him, what he
needed to do before he left, and, finally, instructions to leave (see Table 3).
We knew from our previous experience with George (and many other clients)
that such a message was far too complex. We therefore suggested splitting it into
separate messages such as the following:
12:25 p.m.: Get ready to go out. Get money, keys, bus pass, and Building Society book.
12:30 p.m.: Time to leave and lock up (Building Society; buy bus pass; pay paper bill).
Switch off lights. Switch on answer phone.

1
The service is available in the United States from Adaptive Learning Company, 6300
Powers Ferry Road, Suite 600-305, Atlanta, Georgia 30327.
 294 Wilson, Emslie, Quirk, and Evans

After all of the similar lengthy messages were discussed with George, the
amended list was agreed to and the messages were sent as and when requested.
Within 3 weeks of the new regime, George was beginning to establish his
routines. Among these was one to sit down on Wednesday mornings with his carer
to plan his week and decide on amendments or additions to his pager messages.
George himself called in the weekly changes and did so without fail. At this point,
we received a call from the carer, who had previously been staying overnight,
saying he was no longer required to sleep over because George was more
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independent. He also said how positive George was feeling about himself. George
himself commented, "If it's a short message [on the pager] it's like an order and I
might not do it but if it's a longer message it gives me a chance to get my thoughts
organized."
One week later, George called to say that he now had only one carer and that he
was confident he could cut down on the number of messages received. For
example, he no longer needed reminders about locking up during the day, turning
off lights, where he was going, and lists of what he needed to take with him.
One month after this, George was able to cut the number of prompts by half so
that the maximum number transmitted per day was 11 and the average number
was 5 per day. Monday's message list was now much shorter (see Table 4).
In the last 2 weeks of the 3-month trial, we asked George to complete a
questionnaire about his feelings regarding NeuroPage®. One of the questions was
"What are you able to do with the pager that you couldn't do before?" George
replied: "With the pager I'm able to get things done, organize my life, plan and
prioritize. I have established a routine." He went on to request the pager for a
further week, although it was finally returned 3 weeks later. Understandably, he
was apprehensive about managing alone. Since April 26, 1998, George has
managed without his pager. We told him and his carer to get in touch if they
needed help. At the time of writing in September 1998, there has been no contact,
so we assume all is going well.
Finally, during the 3-month trial, we were able to monitor some of the

Table 4. A Typical Day's NeuroPage® Messages After 1 Month of

Independent Living
Time Message
12 p.m. Plan next week's meals and compile shopping list
12:30 p.m. Leave now. Take your bus pass and Building Society book and
pay paper bill
1 p.m. Put your Building Society book away. Check your messages and
switch off answer phone
3:20 p.m. Check cupboard and go shopping
7 p.m. Would you like to choose an option? Swim, social, physio, read
9:40 p.m. Take tablets now
9:55 p.m. Lock up
 George: Learning to Live Independently 295

behaviors targeted during the original 16-week trial. Not all of the original targets
were appropriate during the second trial, but those that were included the
following: (a) remembering to take everything he needed with him when he went
out (Target 2), (b) remembering to switch on the answer phone before he went out
(Target 3), and (c) remembering to do everything he wanted to do that day (Target
4). George was 80% successful at achieving these things during the 1-month
follow-up of the extended trial and 100% successful at the 2-month follow-up of
the extended trial.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
This document is copyrighted by the American Psychological Association or one of its allied publishers.

GENERAL DISCUSSION

As was the case for the people in the pilot study (Wilson et al., 1997), George
benefited from the pager and showed an improvement in the number of target
behaviors achieved. Why was the system effective for George? One likely
contributing factor was the fact that George had some insight into his problems,
recognized he had memory problems, and wanted to do something about them so
as to become independent. We found in the pilot study, and with other clients in
the ongoing study, that those who deny their problems or who are not motivated to
change tend to respond poorly.
In addition, George had clear structured routines to build on, and NeuroPage®
appears to be particularly beneficial for those people who need to carry out certain
tasks regularly. George was also in a supportive environment; his parents actively
sought out help and privately employed a carer who cooperated in the data
collection.
Perhaps the most important factor is that NeuroPage® is easy to use for people
with cognitive impairments. Although the system is, in fact, quite sophisticated,
from the client's point of view it is simple and direct. The pager beeps or vibrates
at the time the message is transmitted, and the client is alerted to read the paged
message, acts on it there and then, and is thus guided through daily tasks.
Although difficult to prove, we believe that, like other clients, George's
cooperation was enhanced because he himself determined the messages to be
transmitted and the wording of these messages. George felt very much in control
of his pager, he was capable of deciding what he did and did not want, and he
called each week with updates. This may well have increased his positive feelings
about the system. The majority of our clients, their families, and their carers are
very positive about NeuroPage®. Finally, having a pager is prestigious, and this,
too, may enhance people's willingness to participate.

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