helping persons with mild or moderate alzheimer's disease recapture basic daily activities...
TRANSCRIPT
RESEARCH PAPER
Helping persons with mild or moderate Alzheimer’s disease recapturebasic daily activities through the use of an instruction strategy
GIULIO E. LANCIONI1, KATIA PINTO2, MARIA L. LA MARTIRE2, ALESSIA TOTA2,
VALERIA RIGANTE2, EMANUELA TATULLI2, ELISABETTA PANSINI2,
MAURO G. MINERVINI2, NIRBHAY N. SINGH3, MARK F. O’REILLY4,
JEFF SIGAFOOS5 & DORETTA OLIVA6
1University of Bari, Bari, Italy, 2Alzheimer Rehabilitation Centre Bisceglie, Italy, 3ONE Research Institute, Midlothian, VA,
USA,4University of Texas at Austin, TX, USA, 5University of Tasmania, Hobart, Australia, and 6Lega F. D’Oro Research
Centre, Osimo, Italy
Accepted January 2008
AbstractPurpose. The present three pilot studies assessed the effectiveness of verbal instructions, presented automatically throughsimple technology, in helping persons with mild-to-moderate Alzheimer’s disease recapture basic daily activities. Theactivities were morning bathroom routine, dressing, and table-setting.Method. The studies that focused on morning bathroom routine and on table-setting included three participants each,while the study that focused on dressing involved four participants. A non-concurrent multiple baseline design acrossparticipants was used for each study. The instructions and technology were available only during the intervention phases.Results. Data showed that the intervention strategy involving verbal instructions for the single activity steps presentedautomatically through technology was effective in helping all participants on each of the activities. The participants’ meanpercentages of correct steps across activities raised from 13 – 54 during the baseline periods to above 80 or 90 during theintervention periods.Conclusions. The results suggest that the intervention strategy reported may represent a suitable approach for helpingpersons with mild or moderate Alzheimer’s disease to recapture basic daily activities. New research should target otheractivities and check maintenance and generalization issues.
Keywords: Alzheimer’s disease, daily activities, verbal instructions, support technology
Introduction
Alzheimer’s disease is an age-related neurodegenera-
tive disorder, which is characterized by progressive loss
of memory, a deterioration of higher cognitive func-
tions, and the increasing difficulty/inability to perform
daily activities (i.e., self-help and occupational or
domestic activities) [1 – 6]. The growing awareness
about the spread of this disease and its greatly
negative implications at personal and social levels has
prompted a new emphasis on finding pharmacologi-
cal and behavioural strategies to confront it [6 – 10].
At present, the pharmacological approach relies
mainly on three types of intervention, that is, the use
of anti-oxidants (e.g., Vitamin E), the use of
acetylcholinesterase inhibitors (e.g., rivastigmine
and donepezil), and the use of the N-methyl-D-
aspartate receptor-antagonist, memantine [10 – 15].
The results seem to suggest that anti-oxidants can
slow down the progression of the disease but do not
improve the overall cognitive functioning of the
persons [11]. The other pharmacological interven-
tions may have beneficial effects on cognitive
functions and psychiatric symptoms but not neces-
sarily on performance of daily living skills [11,14].
Behavioural intervention can embrace a variety of
strategies including reality orientation therapy (in
which information such as the patient’s name, time,
Correspondence: G. E. Lancioni, Department of Psychology, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. E-mail: [email protected]
Disability and Rehabilitation, 2009; 31(3): 211–219
ISSN 0963-8288 print/ISSN 1464-5165 online ª 2009 Informa Healthcare USA, Inc.
DOI: 10.1080/09638280801906438
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date, location, and current events are regularly
rehearsed), attention and memory drills (in which
the patients engage in repeated attention and
memory tasks), and face-name association tasks (in
which the pictures and names of relevant people are
regularly presented together to promote their match-
ing) [5,6,16 – 20]. These strategies are considered
essential to improve the overall cognitive/functional
condition of the person and thus are planned as a
countermeasure to the deterioration caused by the
disease. In spite of the large agreement on such a
countermeasure, two questions are apparent. First,
the overall effects of the interventions may not
necessarily be very strong. Second, such effects
may hardly influence the person’s performance
outside of the areas on which the intervention
focuses. More specifically, it may be difficult to
expect visible changes in activities of daily living as a
consequence of the aforementioned intervention
strategies [6,16,19 – 21].
Based on this realization, behavioural intervention
has also been directly aimed at promoting activities
of daily living such as dressing and washing. Such
intervention relied on computer-mediated prompt-
ing [4,22,23] or staff’s graduated prompting and
reinforcement [2,24 – 26]. Outcomes indicated im-
provements in the patients’ performance of those
skills. Such improvements, however, were not
necessarily striking in terms of overall independence
from staff and practical relevance, and could be
difficult (time-consuming) to achieve as well as
relatively unstable [2,25,26].
In light of these outcomes, one may argue that
regaining the performance of activities of daily living
by these persons may be easier if: (a) They are
allowed to use some form of instruction cues to guide
their performance, and (b) support technology is
applied to help them manage the aforementioned
cues efficiently and with limited or no effort [2,27].
The combination of these two elements could have
positive impact on the patients’ immediate and longer-
term performance and reduce the level of input
required from staff [28,29]. The aim of these three
pilot studies was in line with the aforementioned
reasoning. They assessed the effectiveness of verbal
instructions presented automatically through simple
technology in helping patients with mild-to-moderate
Alzheimer’s disease recapture basic activities of daily
living such as morning bathroom routine (Study I),
dressing (Study II), and table-setting (Study III).
Study I
Method
Participants. The participants, Roscoe, Stacey and
Flora, were 81, 79, and 86, years of age, respectively,
and were considered to function within the mild or
moderate range of the Alzheimer’s disease. Their
scores on the Mini Mental State Examination [30]
were 19, 22, and 10, respectively. They were
reported to be passive or erratic when asked to
perform basic activities of daily living, such as
morning toilet routine and dressing, as well as
occupational activities or house chores. However,
they seemed to possess (and control) the motor
schemes required for the single activity steps, and
prompting in the form of verbal instructions was
generally effective in guiding them through such
steps and ensuring their performance. They were
temporarily residing in an Alzheimer Rehabilitation
Centre, in which typical behavioural intervention
strategies such as reality orientation therapy were
implemented together with mild forms of movement
therapy. No specific pharmacological treatment was
available at the time of the study for the participants’
Alzheimer condition. The research was approved by
an ethics committee and received formal consent
from the participants’ families.
Setting, morning bathroom routine, data recording,
and reliability
The study was carried out in the participants’
bathroom, in the Alzheimer Rehabilitation Centre.
The morning bathroom routine consisted of 17
steps. Table I reports the list of steps and general
instructions that were available for them. The
instructions (recorded on tape by research assistants)
could show variations in the terminology and accent
used for the different participants and could also
include repetitions. For example, each instruction
could be uttered twice in close succession. Variations
and repetitions were to make the instructions more
suitable to the participants’ language characteristics
Table I. List of steps (and general instructions) for the bathroom
routine.
1. Sit on the toilet;
2. Take the soap;
3. Use the bidet;
4. Take the towel;
5. Dry yourself with towel;
6. Take the underpants;
7. Put on underpants;
8. Take toothbrush and dentures;
9. Go to wash dentures;
10. Take the soap;
11. Use soap over face and neck;
12. Take the towel;
13. Dry yourself;
14. Take new soap;
15. Wash your armpits;
16. Take the towel;
17. Dry your armpits.
212 G. E. Lancioni et al.
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and environmental background, which had been
previously assessed. The participants’ performance
of a step was recorded as ‘correct’ if it matched the
description of such step (and the instruction available
for it during the intervention) and occurred indepen-
dent of prompting by research assistants (see below).
Interrater reliability was checked in 25% of the
bathroom-routine trials. The mean percentages of
agreement (computed by dividing the number of
steps with agreement by the total number of steps and
multiplying by 100) for the single participants
exceeded 98.
Activity material and technology
The activity material involved a table with all the items
required for the bathroom routine. The technology
was comprised of a battery-powered, radio-frequency
photocell, light-reflecting paper, a modified Walkman
with the recording of the verbal instructions related to
the bathroom-routine steps (see Table I), and a
microprocessor-based electronic control unit. This
unit was fitted with specifically developed software
and included: (a) A radio-frequency receiver that
responded to the photocell inputs, and (b) a pro-
grammable command function that regulated the
Walkman and, thus, the presentation of the verbal
instructions. The photocell and light-reflecting paper
were arranged in front (at the opposite sides) of the
table with the items for the bathroom routine, so that
the person broke the photocell light beam every time
he/she reached for the items.
The bathroom routine activity started with the
control unit activating the Walkman and the first
instruction (i.e., sit on the toilet). After a pro-
grammed, long interval (e.g., 110 seconds), the
control unit activated the Walkman and the second
instruction occurred (i.e., take the soap). In taking
the soap, the person broke the photocell light beam.
This started a programmed, brief interval (e.g., 6
seconds) at the end of which the control unit activated
the Walkman and consequently the next instruction
occurred (i.e., use the bidet). This instruction started
another long interval at the end of which the control
unit activated the Walkman with a new instruction
(i.e., take the towel). In taking the towel, the person
broke the photocell light beam and the process
continued like above for this step and the next steps
of the sequence. The intervals were programmed by
the research assistants based on previous observations
of the participants through the activity [31,32].
Experimental conditions
The study was carried out according to a non-
concurrent multiple baseline design across partici-
pants [33]. All participants started with a baseline
phase the length of which varied across them (see
below). Subsequently, intervention started. Verbal
and physical prompting by a research assistant would
occur if the participants remained passive or wan-
dered around for about 30 sec, or failed to perform a
step appropriately (during both Baseline and Inter-
vention), or failed to respond to an instruction for
10 – 20 sec (during Intervention). At the end of the
sequence, the research assistant expressed social
appreciation (i.e., two or three sentences underlining
the participants’ good effort).
Baseline. The baseline phase included 6, 7, and 12
bathroom-routine trials for the three participants,
respectively. During baseline, the participants
were to perform the bathroom routine without
the help of the technology and related verbal
instructions.
Intervention. This phase was preceded by familiariza-
tion (practice) with the technology and instructions
during two bathroom-routine trials. The intervention
phase per se included 27, 27, and 47 trials for the
three participants, respectively (i.e., based on their
availability). During each trial, the participants
performed all bathroom-routine steps with the help
of the technology, which presented the instructions
as described above.
Results
The three graphs of Figure 1 summarize the data for
Roscoe, Stacey, and Flora, respectively. During the
baseline period, the participants’ mean percentages
of steps carried out correctly varied between 16 and
54. During the intervention, all three participants
showed a rapid and solid increase in the number of
steps carried out correctly with overall mean
percentages exceeding 90. The Kolmogorov-
Smirnov test showed that the aforementioned
increases from the baseline to the intervention were
significant (p5 0.01) for all participants [34].
Study II
Method
Participants. The participants, Trudy, Sara, Roscoe,
and Cecile were 81, 79, 81, and 74 years of age,
respectively, and were considered to function within
the moderate range of the Alzheimer’s disease.
Roscoe had been involved in Study I while the other
participants had no previous study exposure. Their
scores on the Mini Mental State Examination [30]
were 15, 15, 19, and 14, respectively. The partici-
pants were reported by their families to have
problems in carrying out activities of daily living as
Alzheimer’s disease and daily activities 213
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well as occupational activities or house chores and
tended to be passive or erratic. However, verbal
instructions were generally effective in guiding them
through the activity steps and ensuring their perfor-
mance. Indeed, they seemed to possess (and control)
the motor schemes required for the activity steps.
They were temporarily residing in the Alzheimer
Rehabilitation Centre (and received the same beha-
vioural intervention strategies) mentioned in Study I.
Pharmacological treatment for the Alzheimer condi-
tion was available only for Trudy and consisted of
acetylcholinesterase inhibitors. The research was
approved by an ethics committee and received
formal consent from the participants’ families.
Setting, dressing activity, data recording, and reliability
The study was carried out in the participants’
bedrooms, in the Alzheimer Rehabilitation Centre.
The participants sat on a chair at the side of their
bed. The dressing activity consisted of 10 or 12 steps
for different participants. Table II reports a list of 12
steps and the instructions that were available for
them. Regarding the instructions, some variations in
terminology and accent as well as repetitions (e.g.,
two utterances of each instruction in close succes-
sion) could be programmed to suit the participants’
characteristics and environmental background,
which had been previously assessed (see Study I).
Recording of participants’ performance and inter-
rater reliability were as in Study I.
Activity material and technology
The material required for the dressing activity (see
the items mentioned in Table II) was displayed on
the participant’s bed except for the shoes that were
under the bed. The technology was the same as that
described in Study I, whereas the verbal instruc-
tions matched the dressing steps programmed for
the participants. The intervals between instructions
(similar to those used in Study I) were programmed
by the research assistants based on previous
observations of the participants through the dressing
activity (see Technology in Study I). The photocell
and light-reflecting paper were arranged at the side
of the participant’s bed so that he/she would
interrupt the light beam anytime he/she reached
for an item.
Experimental conditions
The study was carried out according to a non-
concurrent multiple baseline design across parti-
cipants [33]. All participants started with a base-
line phase followed by intervention. Baseline,
intervention and pre-intervention familiarization
conditions were comparable to those reported in
Study I.
Results
The four graphs of Figure 2 summarize the data for
Trudy, Sara, Roscoe, and Cecile, respectively.
Figure 1. The three graphs summarize the bathroom-routine data for Roscoe, Stacey, and Flora, respectively. Each data point represents the
percentage of correct steps performed during a bathroom-routine trial.
214 G. E. Lancioni et al.
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During the baseline period (including 6, 9, 10, and
13 dressing trials for the four participants, respec-
tively), the participants’ mean percentages of steps
carried out correctly varied between 14 and 41.
During the intervention, all four participants showed
a rapid and solid increase in correct performance
with overall mean percentages ranging between 80
and 96. The Kolmogorov-Smirnov test showed that
the aforementioned increases from the baseline to
the intervention were significant (p5 0.01) for all
participants [34].
Study III
Method
Participants. The participants, Muriel, Paula, and
Sandy, were 73, 81, and 73 years of age, respectively,
and were considered to function within the moderate
range of the Alzheimer’s disease. Their scores on the
Mini Mental State Examination [30] were 14, 15,
and 15, respectively. Like the participants of Studies I
and II, the present participants: (a) Had problems in
carrying out activities but were able to follow verbal
instructions related to those activities satisfactorily,
and (b) were temporarily residing in an Alzheimer
Rehabilitation Centre in which they received typical
behavioural intervention strategies (see above).
Pharmacological treatment for the Alzheimer condi-
tion was available only for Paula and consisted of
acetylcholinesterase inhibitors. The research was
approved by an ethics committee and received formal
consent from the participants’ families.
Setting, table-setting activity, data recording, and
reliability
The study was carried out in a dining room, in the
Alzheimer Rehabilitation Centre. The table-setting
activity consisted of 12 or 14 steps for the different
Table II. List of steps (and general instructions) for the dressing
activity.
1. Take the socks/stockings;
2. Put on the socks/stockings;
3. Take the pants;
4. Put on the pants;
5. Take the vest;
6. Put on the vest;
7. Take the pullover;
8. Put on the pullover;
9. Take the glasses;
10. Put on the glasses;
11. Take the shoes;
12. Put on the shoes.
Figure 2. The four graphs summarize the dressing data for Trudy, Sara, Roscoe, and Cecile, respectively. Data points are plotted as in
Figure 1.
Alzheimer’s disease and daily activities 215
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participants. Table III reports a list of 14 steps and the
instructions that were available for them. Regarding
the instructions, some variations in terminology and
accent as well as repetitions (e.g., two utterances of
each instruction in close succession) could be
programmed to suit the participants’ characteristics
and environmental background, which had been
previously assessed (see Study I). Recording of
participants’ performance and interrater reliability
matched those of the previous studies.
Activity material and technology
The activity material included the table-setting
items displayed on a cupboard or on a serving car.
For Paula, the items contained a label with the
matching name written on it. This was done because
she seemed to benefit from such labels in identifying
the items. The technology was the same as that
described in Study I, whereas the verbal instructions
matched the table-setting steps programmed for the
participants. The intervals between instructions
(similar to those used in Study I) were programmed
by the research assistants based on previous observa-
tions of the participants through the table-setting
activity (see Technology in Study I). The photocell
and reflecting paper were arranged in front of the
cupboard or serving car so that the participant
would interrupt the light beam anytime she reached
for an item.
Experimental conditions
The study was carried out according to a non-
concurrent multiple baseline design across partici-
pants [33]. Baseline, intervention and pre-interven-
tion familiarization conditions were comparable to
those reported for Studies I and II.
Results
The three graphs of Figure 3 summarize the data for
Muriel, Paula, and Sandy, respectively. During the
baseline period (including 10, 13, and 15 table-
setting trials for the three participants, respectively),
the participants’ mean percentages of steps carried
Table III. List of steps (and general instructions) for the table-
setting activity.
1. Take the table cloth;
2. Put table cloth on table;
3. Take fork and knife;
4. Put fork and knife on table;
5. Take the glass;
6. Put glass on table;
7. Take the plate;
8. Put plate on table;
9. Take the bread;
10. Put bread on table;
11. Take the water;
12. Put water on table
13. Take the fruit;
14. Put fruit on table.
Figure 3. The three graphs summarize the table-setting data for Muriel, Paula, and Sandy, respectively. Data points are plotted as in Figure 1.
216 G. E. Lancioni et al.
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out correctly varied between 13 and 49. During the
intervention, all three participants showed a notice-
able increase in correct performance with overall
mean percentages exceeding 80. The Kolmogorov-
Smirnov test showed that the aforementioned
increases from the baseline to the intervention were
significant (p5 0.01) for all participants [34].
General discussion
The data of the three pilot studies support the notion
that the use of verbal instructions and basic
technology to control their presentation can be quite
effective in helping persons with mild or moderate
levels of Alzheimer’s disease recapture relevant daily
activities [2,27,29]. The positive effects seemed to be
by and large rapid, that is, the participants generally
improved their performance within a brief period of
time and with only rather modest external guidance.
This could be considered a greatly relevant achieve-
ment countering some of the main problems of these
persons (i.e., their increasing failure, frustration and
withdrawal) and simultaneously promoting their self-
determination, alertness, and social image
[24,28,35,36]. The same results could also be
considered highly valuable for family and caregivers
in general. Indeed, they can give these people: (a)
Some respite as to the level of direct assistance
required, (b) a new, more positive image of the
person they care for with the possibility of enhancing
their emotional ties with him or her, and (c)
encouraging expectations and consequent motiva-
tion to extend the intervention through other daily
activities [20,21,37 – 39].
In view of the results, a number of considerations
may be made. First, the generally rapid improvement
obtained by the participants suggests that they: (a)
Were fairly capable of understanding the instructions
used for the activity steps (although not necessarily
consistent/accurate in following them, as indicated
by their below 100% performance), and (b) pos-
sessed the motor schemes (and related executive
function) required for the single activity steps.
Essentially, the intervention strategy used in the
studies was effective with participants whose poor
performance prior to the intervention was probably
due to their lack of initiative, deteriorated operative
memory, and poor general planning [40,41]. This
clarification may be important in determining the
applicability of the intervention strategy and the basic
prerequisites it relies on.
Second, the fact that the studies (intervention
phases) were carried out while the participants were
receiving reality orientation and movement therapy
and occasionally also medication may prevent one
from claiming that the results were solely related to
the instruction cues and the technology controlling
them. All the same, the ongoing (background)
behavioural and pharmacological aspects could
hardly be considered of particular relevance. In fact,
they had been applied for weeks/months prior to the
studies with no apparent changes in activities of daily
living or occupational tasks (as indicated by the
baseline levels). Moreover, the changes that followed
the intervention were generally rapid to indicate a
clear relationship between the two [33,42,43].
Third, although only limited data are available,
one may argue that the applicability of the strategy
reported in the three studies can be high among
persons in the mild-to-moderate range of the
Alzheimer’s disease (i.e., persons who can follow
instructions and plan/perform responses accurately).
In fact, the instructions may be largely tailored to the
characteristics and cultural background of the
persons and thus made quite effective. The applic-
ability could also be promoted by the simplicity of
the technology used and the relatively low cost of it
(i.e., about $750) [29,44 – 46]. Its simplicity would
allow caregivers to arrange its use with minimal time
investment or procedural difficulties; its low cost
would allow most rehabilitation centres and families
to acquire it [47,48].
Fourth, the array of activities targeted in the
present studies was rather narrow. One could easily
imagine that the same intervention strategy and
technology could be easily adapted to other activities
such as putting dirty kitchen items into a dish washer
or taking clean kitchen items out of it, preparing
ingredients/tools for a snack (i.e., glasses, drinks, and
foods), and preparing ingredients for a fruit salad or a
cold dessert [49 – 51]. Extending the range of
activities programmed would offer more occasions
of constructive occupation to the person with
important implications on an individual and a
social/environmental level [21,28,37,42].
Fifth, the issues of performance maintenance and
generalization, which were not assessed in these
studies, require careful analysis. One may consider
maintenance a specific index of how important the
intervention is to enhance the person’s functioning
and slow down his or her expected deterioration
[4,6,14,24 – 26]. The maintenance issue could also
be linked to a variety of social-emotional aspects of
great relevance such as person’s dignity and mood,
staff and family’s relief and increased empathy
[2,26,52 – 54]. The generalization may, on the other
hand, represent an index of the applicability of the
intervention strategy. With regard to this latter
aspect, one can refer to the comments made above
both about the instructions and the technology
adopted for presenting them [44 – 48].
Sixth, new research in this area could consider
four aspects as critical. The first aspect could
concern the aforementioned issues of maintenance
Alzheimer’s disease and daily activities 217
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and generalization. The second aspect could concern
an extension in the range of activities considered for
intervention. The third aspect could concern an
analysis of the mood of the persons prior to the
intervention and during the intervention. The possi-
bility that persons obtain some benefit in this area
would be of great importance also in view of their
reported tendency to show depression and sadness
[5,55 – 58]. A fourth aspect could concern a social
validation assessment of the reported data on activity
and mood. Such validation could involve family
members and staff personnel as raters [59 – 61].
In conclusion, the present pilot studies have shown
the possibility of using simple intervention strategies
supported by technology for helping persons with
mild or moderate Alzheimer’s disease improve their
performance of daily activities. These data are still
preliminary for the reasons expressed above. None-
theless, they may constitute an important basis for
advancing rehabilitation intervention in this area and
exploring the four questions suggested for future
research.
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