Research Study
The record of independent living
An informant-completed measure of activities of
daily living and behavior in elderly patients with
cognitive impairment
Sandra Weintraub, PhD
Synopsis
This paper describes the Record of Independent
Living, a new measure of activities of daily living
specifically designed for the evaluation of elderly pa-
tients experiencing cognitive decline.
The clinical assessment of cognitive changes in
the elderly is often limited to neuropsychologic
testing in the clinician's office. Cognitive test scores
alone, however, yield only an indirect measure of
the impact of these changes on daily living ac-
tivities. Furthermore, it is often difficult to interpret
poor test scores in patients who may not have had
the benefit of a formal education or regular employ-
ment. Even when the interpretation of cognitive
test scores is straightforward, an independent
measure of daily living activities is still valuable. In
some cases there may be surprisingly little cor-
respondence between cognitive test scores and dai-
ly living activities. 1"2 In patients who are apathetic,
for example, daily living activities may suffer as a
result of decreased initiative while cognitive test
performance, aided by the structure of the tasks
and the encouragement provided by the examiner,
may not seem so impaired. Conversely, a patient
may perform poorly on novel mental tasks but
function relatively well in a familiar environment
performing overlearned skills. Wilson et a13
demonstrated that scores on a mental status test
were generally able to predict the level of functional
capacity in daily living activities in a group of elder-
ly hospitalized patients, but notable exceptions
Sandra Weintraub, PhD, is with the Division of
Behavioral Neurology and Neuroanatomy and Charles
A. Dana Research Institute; Beth Israel Hospital and
Harvard Medical School, Boston, Massachusetts.
were also reported. An independent measure of dai-
ly living skills would provide information that is
complementary to the traditional neuropsychologic
evaluation.
Numerous scales exist for assessing daily living
skills in elderly individuals.-6 However, with the
exception of the Instrumental Activities of Daily
Living6 and the Index of ADL,4 many of these em-
phasize the evaluation of physical disabilities and
are not appropriate for the physically intact patient
with altered mental state who is still living in the
community. Furthermore, most measures do not
include an assessment of alterations in conduct and
personality. In some patients, changes in these
areas may be the earliest symptoms of a dementing
illness. These patients can obtain scores in the nor-
mal or mildly impaired range on standard cognitive
tests while experiencing a serious disruption in dai-
ly living activities' due to behavioral alterations,
such as lack of judgment or social inappropri-
ateness. Another area that is not commonly evalu-
ated is communication (ie, comprehending, speak-
ing, reading, and writing). Patients with the syn-
drome of slowly progressive aphasia may have
marked limitations in communicative ability but
can carry out daily responsibilities for many years
after the onset of symptoms.7 It is the preservation
of daily living activities that is a key factor in differ-
entiating these patients from those with language
deficits in the context of a generalized dementia.
Finally, most available measures of daily living acti-
vities require a clinician for their completion, mak-
ing additional time demands on what is typically
already a lengthy evaluation procedure.
The Record of Independent Living is a new mea-
sure of activities of daily living specifically designed
for the evaluation of elderly patients experiencing
cognitive decline. It consists of three sections-ac-
The American Journal of Alzheimer's Care 35
and related disorders/Spring 1986
 Research Study
tivities, communication, and behavior. Items in the
first two sections are rated on a scale representing
increasing dependence on others for performance.
The behavior section catalogues alterations in con-
duct commonly associated with dementia. In addi-
tion to examining communication and behavioral
changes, the Record of Independent Living is uni-
que in that it is completed by an informant.
Therefore, it can provide a broad assessment of the
severity of functional and behavioral impairment
without placing additional demands on the clini-
cian's time in the evaluation procedure. Test-retest
reliability and the relationship between caretakers'
ratings on the Record of Independent Living and
patients' scores on the Mattis Dementia Rating
Scale (MDRS)8 are presented.
Instrument. The items on the Record of Independ-
ent Living are displayed in Table 1. The first section
includes a total of 17 activities related to self-care,
household maintenance, recreation, and ability to
function outside the home. An effort was made to
include a number of items that would be applicable
for both male and female patients. The communica-
tion section consists of four items assessing speak-
ing, understanding, reading, and writing. Finally,
the behavior section consists of a checklist of 16
statements describing behavioral problems. Four
statements are listed in each of four major behavior-
al categories commonly occuring in dementia:
apathy, depression, hostility or agitation, and social
inappropriateness.
Each of the items in the activities section is rated
on a scale from 0 (no change when compared to pri-
or competence) to 4 (patient no longer performs this
activity) with ratings in between representing in-
creasing need for assistance in carrying out the ac-
tivity. In the communication section ratings range
from 0 (no difficulty) to 4 (no longer performs this
function). Allowance is made for responding "don't
know" or "not applicable."
Scoring of the activities section takes into consid-
eration the fact that not all items are applicable for
all patients. While this is less common for the items
in the communication section, rare cases of illiter-
acy may exist, and the "not applicable" category
allows for this. Only the total number of items rated
in each section (ie, all items not assigned "don't
know" or "not applicable) is considered in calculat-
ing the score. This number is multiplied by 4 and
the product represents the maximum possible score
for the patient. Then, the total of the actual ratings is
calculated and divided by the total maximum score.
The resulting score is a percent representing the
36 The American Journal of Alzheimer's Care
and related disorders/Spring 1986
severity of impairment and ranges from 0 (no im-
pairment) to 100 (severely impaired). Separate
scores are derived for the activities and com-
munication sections by this method.
For the activities section, scores from 0 to 25% (no
impairment to mild impairment) signify alterations
in daily living activities that are noticeable but do
not require the caretaker's intervention. Scores be-
tween 26% and 50% (mild to moderate impairment)
indicate the need for reminders or verbal instruc-
tions but not for physical intervention. Scores be-
tween 51% and 75% (moderate to severe impair-
ment) reflect the need for physical assistance in per-
forming some parts of activities (eg, laying out the
patient's clothes or assisting in the act of
dressing). Finally, scores between 76% and 100%
(severe impairment) represent complete depend-
ence on others for meeting daily living needs.
Scores on the communication section are best in-
terpreted in terms of the severity descriptions
given above since not all items lend themselves
neatly to assessing the amount of assistance re-
quired for their performance.
Scoring of the behavior section takes into account
the fact that some undesirable behavioral traits may
have been lifelong. The informant is asked to rate
each statement twice, the first time indicating
whether or not it described the patient's behavior
before the onset of illness and the second indicating
whether or not it is currently descriptive. The score
for the behavior section is a percent. The total maxi-
mum score is equal to 16 (total number of state-
ments) minus the number of statements that the in-
formant endorsed as present prior to the illness.
The total number of items endorsed as currently
present minus the number that were present prior
to onset is the current score. The current score is
divided by the total maximum score to derive a per-
cent. For example, if three statements described the
patient's behavior prior to the onset of noticeable
mental status changes, the total maximum score is
13. If ten statements apply currently, the total cur-
rent score is 7 (10 minus the 3 that predated the ill-
ness). The percent derived would be 54% (ie, 7
divided by 13).
Study 1: Comparison of Caretakers' Ratings
on the Record of Independent Living and Pa-
tients' Scores on the Mattis Dementia Rating
Scale
The behavior section was added to the Record of
Independent Living approximately a year after the
activities and communications sections were being
used regularly. Thus, the comparison between each
of the three sections and cognitive test scores is
based on different numbers of subjects.
A. Activities and Communication sections
Subjects. Forty-two patients and their 42 respec-
tive informants participated in this study. The pa-
tients, 27 females and 15 males, ranged in age from
53 to 84 years of age (X= 69.1, SD= 7.49). The pa-
tients were consecutive referrals to the Behavioral
Neurology Unit at Beth Israel Hospital (Boston).
Each had a history of changes in mental state, and
in each case consultation had been requested to rule
out a dementing illness. All patients underwent a
thorough evaluation that included neurologic and
neuropsychologic examinations, computed
tomography, EEG, and blood tests. On the basis of
these procedures, the following diagnoses were
derived: 25 dementia of the Alzheimer's disease
(AD) type, 6 multi-infarct dementia, 4 mixed
dementia (AD plus multi-infarct), 2 metabolic en-
cephalopathy, 1 slowly progressive aphasia without
generalized dementia, 1 depression, and 3 patients
in whom the diagnosis of dementia was suspected
but deferred to the return visit because it was
neither clear that their behavioral changes were not
simply a reflection of the normal aging process nor
that any progressive deterioration was occurring.
The informants consisted mainly of family
members, including 19 spouses, 18 adult children,
1 sibling, and 2 other relatives. Two informants
were unrelated caretakers intimately involved with
the patients. All of the spouses and the two
caretakers were living with the patients. Other in-
formants either lived with the patient or were in fre-
quent regular contact.
Procedures. All patients had been administered
the MDRS8'9 as part of the neuropsychologic exam-
ination in the course of their evaluation. A total raw
score was derived (maximum possible = 144, mean
score for this sample = 106(SD = 16.5). This score is
significantly lower than the mean expected for nor-
mal. elderly patients with an average age of 7510
137(SD = 7) and represents a moderate degree of
mental status compromise. The informants were
instructed to rate the patient's daily living skills by
completing the Record of Independent Living and
did this in the waiting room while the patients were
given neuropsychologic tests. At the end of testing,
informants were briefly interviewed for their com-
ments regarding the questionnaire. Most found it
easy to understand and complete.
Spearman rank correlations1 were carried out
between the scores on the activities and communi-
cation sections of the Record of Independent Living
and also between each of these and the total MDRS
score.
Results
A significant negative correlation was obtained
between the total MDRS score and the activities
score (rs = - 0.49, p less than 0.002) and, to a smaller
degree, between the total MDRS score and com-
munication score (rs = -0.30, p less than 0.05). The
negative values resulted from the fact that low
scores on the Record of Independent Living reflect
less impairment while low scores on the MDRS re-
flect greater impairment. Thus, patients who ob-
tained low scores on cognitive testing required
more assistance in daily living activities and had
more difficulty with communication than those
who obtained higher scores.
There was a significant correlation between the
activities and communication sections of the
Record of Independent Living (rs =-0.49, p less
than 0.002).
Subjects. Subjects consisted of 14 patients and
their 14 informants. The mean age of the patients in
this sample was 65.6 years (SD=5.42). Eight pa-
tients carried the presumptive diagnosis of AD, 2 of
multi-infarct dementia, 1 of normal pressure hydro-
cephalus, and 2 of metabolic encephalopathy. In
one patient the diagnosis was deferred. Eight infor-
mants were spouses, 3 were adult children, and 3
were siblings. Eight patients and their informants
had also participated in study 1.
Procedures. Procedures were similar to those
reported for Study 1. Spearman rank correlation"
was used to compare the total MDRS score with the
score on the behavior section.
Results. The mean MDRS score obtained by the
patients in this sample was 101.1 (SD=22.2). There
was no significant correlation between the total be-
havior score and the total score on the MDRS
(rs = 0.251, p greater than 0.05/.
Study 2: Test-retest reliability of the Record
of Independent Living (Activities, Communi-
cation, and Behavior sections)
The behavior section was recently added to the
Record of Independent Living, and thus only 21
subjects participated in this study.
Subjects. Subjects consisted of 21 informants, in-
cluding 7 spouses living with the patient, 9 adult
children either living with or in frequent regular
contact with the patient, 3 siblings, 1 other relative,
and 1 caretaker. In each case, the patient for whom
the measure was being completed had been evalu-
The American Journal of Alzheimer's Care 37
and related disorders/Spring 1986
 Research Study
ated in the Behavioral Neurology Unit within the
previous six months. Four of the subjects had also
participated in study 1 several months earlier.
Procedures. Subjects were asked to complete the
Record of Independent Living on two separate oc-
casions no less than one week and no more than
three weeks apart. Spearman rank correlations
were carried out between each of the three sections
at time 1 and time 2.
Results. Agreement between the two test sessions
was high for all three sections of the Record of Inde-
pendent Living. For the activities section, the cor-
relation was 0.93 (p less than 0.001); for the com-
munication section, 0.81 (p less than 0.001); and
for the behavior section, 0.95 (p less than 0.001).
The correlation between the activities and com-
munication sections at time 1 was 0.53 (p less
than 0.02) and at time 2 was 0.57 (p less than
0.01), similar to that reported for study 1. At no
time was the correlation between the behavior
score and scores on the activities and com-
munication sections significant.
Discussion
The Record of Independent Living is an
informant-completed measure of daily living activi-
ties, communication, and behavior specifically de-
signed to supplement the clinical evaluation of el-
derly patients with mental status compromise. In-
formant ratings on the activities section, but not On
the communication or behavior sections, were signi-
ficantly correlated with the total score obtained by
patients on the Mattis Dementia Rating Scale
(MDRS)(Mattis, 1976). This finding was anticipated
since the MDRS measures memory and cognitive
functions that mediate the performance of daily liv-
ing skills but does not directly measure language
and the emotional/behavioral features sampled in
the other two sections of the Record of Independent
Living. Even though significant, however, the cor-
relation between the activities and MDRS scores
was not high (rs= -0.49). This implies that activi-
ties of daily living may not be accurately predicted
solely on the basis of cognitive test scores.
There was also a significant correlation between
scores on the activities and communication sections
of the Record of Independent Living but not be-
tween either of these sections and the behavior sec-
tion. Thus, the behavior section appears to be mea-
suring characteristics that are independent from
skills in performing daily living activities. It may
be the case for some patients that behavioral al-
terations pose a greater obstacle to management
than does altered proficiency in routine skilled
performance.
38 The American Journal of Alzheimer's Care
and related disorders/Spring 1986
All three sections, activities, communication,
and behavior, showed high test-retest reliability.
The Record of Independent Living provides a
measure of the severity of functional disability in
daily living activities but does not yield information
about the way in which different cognitive deficits
influence their performance. This information is
desirable since it has implications for management.
Each seemingly unitary activity (eg, dressing, shop-
ping, and driving) can in fact be subdivided into
several components. All activities require initiative
and sustained effort. Most activities have visuo-
spatial components (eg, ability to pick out an article
of clothing from the closet or an item from a grocery
store shelf or ability to judge the distance between
two cars). Finally, all activities have memory and
organizational aspects (eg, remembering where the
rake is kept or correctly sequencing the steps re-
quired to cook an egg). A more detailed analysis of
daily living skills might be able to identify the single
cognitive deficit that is the limiting factor in failure
to perform several seemingly different daily skills.
In an earlier version of the Record of Independent
Living,' we attempted to obtain this information
from informants but abandoned the effort when it
became apparent that a clinician's intervention was
necessary to ensure valid ratings.
The most practical way to assess daily living ac-
tivities and their limiting components is by direct
observation. Kuriansky, et al12 have designed a
method of assessing elderly patients while they are
performing tasks that simulate daily living skills in
the clinician's office. Recently, we have been work-
ing on a method of assessing the patient in his own
home. The Home Visit Assessment 13 combines
methods of interview and observation that can
identify the limiting factor in a patient's failure to
carry out routine chores and that can then lead to
management recommendations- that are firmly
rooted in the patient's real-life experience.
As mentioned earlier, there may occasionally be a
puzzling discrepancy between cognitive test scores
and functional capacity in daily living skills. In our
experience, these discrepancies deserve further ex-
ploration not only to determine the patient's true
level of functioning in daily living activities but also
to gain insight into diagnostic uncertainties. We ex-
amined a patient in whom cognitive test perform-
ance was normal but daily living activities as de-
scribed by the family were impaired.13 The patient
had become lost in his immediate neighborhood on
several occasions. Further investigation with a
home visit revealed a bereaved man who had not
stopped mourning the death of his wife after three
years and who admitted that at times his preoc-
cupation was such that it caused him to lose his
way. Resolving this discrepancy led to a clearer
perception of the role of depression in diminishing
competence in daily living and pointed the way to
appropriate recommendations for management.
The Record of Independent Living provides a
measure of the patient's functional status and alerts
the clinician to problem areas and changes in com-
petence over time that signal the need for additional
support services at home or institutionalization.
The Record of Independent Living may also be a
useful adjunct to a battery of tests used to evaluate
the effects of clinical drug trials. Drugs may have
different effects on daily living activities and
cognitive test performance. Those that significantly
raise cognitive test scores but have no perceptible
effect on daily living activities are unlikely to play a
useful role in practical management. This is a
critical issue in the approach to treating mental
status changes in the elderly if the objective is to
preserve the independence in daily living and delay
institutionalization.
Table 1. Items on the Record of Independent Living
Activities
Eating
Washing and grooming
Using the bathroom
Getting dressed
Preparing food
Setting the table
Household upkeep, interior and exterior
Responsibility for personal belongings and aids
Mobility in home, neighborhood
Using public transportation
Driving
Shopping and handling cash
Managing finances
Recreation and organizations
Using the telephone
Occupation
Function outside of familiar environment
Communication
Talking
Understanding
Writing
Reading
Behavior
Apathy
Tends to be apathetic; does not take initiative to start
activity
Does not join in ongoing activities
Cannot complete a project once started, stops midway
Does not take pride in work or appearance, is sloppy
Depression
Looks or talks about feeling sad
Feels guilty about being a burden on others or blames
himself for bad things that happen
Tends to cry a lot
Seems anxious or worried most of the time
Hostility or agitation
Is irritable, gets annoyed easily
Is agitated or restless
Is suspicious of others
Gets hostile or violent
Social inappropriateness
Does things in public that are embarassing
Has poor social graces, is not polite or hospitable
Makes inappropriate sexual innuendos and advances
Behavior does not seem to be affected by the presence
of company or strangers
Footnotes
1. The work reported in this paper was supported in part by grant 1P50
AGO5134-01 from the National Institute on Aging to the Massachusetts
Regional Alzheimer's Disease Research Center. Robin Baratz, M.A.,
contributed significantly to the early versions of the Record of Indepen-
dent Living. Joan Guinnessey, B.S., provided expert technical assistance
with data collection and analysis.
2. Behavioral Neurology Unit, K-225; Beth Israel Hospital, 330
Brookline Ave., Boston, MA 02215.
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The American Journal of Alzheimer's Care 39
and related disorders/Spring 1986