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The Activities of Daily Living Questionnaire A

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JOBNAME: alz 18#4 2004 PAGE: 1 OUTPUT: Tue November 16 22:21:58 2004
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ORIGINAL ARTICLE
The Activities of Daily Living Questionnaire
A Validation Study in Patients with Dementia
N. Johnson,*† A. Barion,*‡ A. Rademaker,*§ G. Rehkemper,k and S. Weintraub*†‡
Abstract: This study describes the development and validation of
the Activities of Daily Living Questionnaire (ADLQ), an informant-
based assessment of functional abilities, in patients with probable
Alzheimer disease and other forms of dementia. The ADLQ measures
functioning in six areas: self-care, household care, employment and
recreation, shopping and money, travel, and communication. The
ADLQ was administered to 140 caregivers followed longitudinally in
the Northwestern Alzheimer’s Disease Center. In a subset of 28 par-
ticipants, the total ADLQ score and each of the subscales were found
to be highly reproducible, with average concordance coefficients of
0.86. Concurrent validity was established by comparing the ADLQ
with the Record of Independent Living, a previously validated mea-
sure of level of dependency in daily living activities. The ADLQ was
also compared with other measures of dementia severity on the initial
and annual follow-up visits and was found to be significantly and
negatively correlated with the Mini-Mental State Examination and
positively correlated with the Clinical Dementia Rating Scale. The
ADLQ has high test-retest and concurrent validity and is consistent
with other measures of temporal decline in patients with probable
Alzheimer disease and other forms of dementia.
Key Words: activities of daily living, dementia
(Alzheimer Dis Assoc Disord 2004;18:223–230)
A s the older population grows, chronic conditions, such as
dementia, have become a focus of medical practice. The
provision of long-term care for individuals with dementia is
emerging as a major public health problem in the foreseeable
future. Independent living skills are necessary for functioning
in the home and in the community. The functional disability
associated with dementia has a major impact on the quality of
life, not only of affected patients living in the community but
also of their caregivers.1 Functional assessment, therefore, is
important in making recommendations about appropriate
Received for publication June 19, 2003; accepted April 30, 2004.
From the *Cognitive Neurology and Alzheimer’s Disease Center, and the
Departments of †Psychiatry and Behavioral Sciences, ‡Neurology, and
§Preventive Medicine, Northwestern University Feinberg School of
Medicine, Chicago, IL; and kWaukesha Memorial Hospital, Waukesha, WI.
Supported by National Institute on Aging, Alzheimer’s Disease Core Center
grant AG 13854 to Northwestern University, Chicago.
Reprints: Nancy Johnson, PhD, Cognitive Neurology and Alzheimer’s Disease
Center, Northwestern University Medical School, 320 E. Superior, Searle
11-499, Chicago, IL 60611 (e-mail: johnson-n@northwestern.edu).
Copyright Ó 2004 by Lippincott Williams & Wilkins
Alzheimer Dis Assoc Disord
Volume 18, Number 4, October–December 2004
settings of care, measuring disease severity, and determining
caregiver needs. For all of these reasons, the assessment of daily
living activities is increasingly recognized as a valuable out-
come measure in clinical trials.2
Two main types of abilities are measured by functional
assessment scales. Basic activities of daily living (ADL) con-
sist of activities that are performed daily, habitually and univer-
sally, such as dressing, bathing, and eating. In contrast, instru-
mental ADL require organization and planning, and include
such tasks as shopping, using transportation, preparing meals,
handling finances, keeping the house, and using a telephone.
Many of the early ADL scales were designed for use in
a rehabilitation setting3–5 and thus emphasize basic physical,
rather than cognitive, abilities. These scales are less applicable
to a dementia population where limitations in ADL are most
often the result of cognitive decline, while physical abilities
remain relatively intact for an extended time. In addition, most
of these scales require clinical observation of the patient and
are time-consuming and impractical in an outpatient clinical
setting. Several scales have been designed to detect early
signs of dementia,6–9 but the utility of these scales in iden-
tifying symptoms in later stages of dementia or tracking pro-
gression of symptoms after the onset of dementia has not been
established.
Several scales have been developed specifically for use
in the dementia population. The Daily Activities Questionnaire
was developed to assess instrumental and self-care activities of
daily living in patients with Alzheimer disease (AD).10 This
scale is observational and was designed to be completed by
an occupational therapist on an inpatient unit. The original
10-item scale was reduced to 5 items ordered along a con-
tinuum of difficulty from ‘‘eating’’ to ‘‘finances.’’ This scale
has been shown to have good construct and internal validity in
assessing clinical progression of AD. However, only a small
range of behaviors are rated, and there is no breakdown of
specific subscales (eg, communications, finances) which limits
its utility in non-Alzheimer’s dementia syndromes. In addition,
although this scale demonstrates good validity in the inpatient
population, it is not applicable for use in an outpatient clinical
setting. The Bristol Activities of Daily Living Scale11 is
a caregiver-rated instrument designed specifically for use in
the community. While this scale has the advantages of ease of
use, test-retest reliability was only fair or moderate on 8 of
22 items. In addition, more than half of the items (13 of 22) on
the scale rate basic ADL (eg, selecting food, eating food,
selecting drink, drinking); therefore, the total score is heavily
weighted by these tasks. Most individuals with dementia
would not experience a decline in these areas until the later
223
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stages of illness, and this scale is not likely to be sensitive to
early decline in higher level cognitive activities. No provision
is made for the calculation of functional subscales, so changes
in ADL that occur in patients with neuropsychologically focal
dementia syndromes (eg, primary progressive aphasia) would
not be easily detected. The Disability Assessment for De-
mentia scale is a caregiver interview developed for use in
clinical trials, which includes items to assess both basic and
instrumental ADL.12 The 46-item scale can be broken down
into three subdomains; initiation, planning and organization,
and performance. This scale has been shown to have good
reliability and validity and to be sensitive to decline in
performance over a 12-month period.13 While the usefulness
of this scale has been demonstrated in clinical trials, potential
limitations for use in clinical practice include the interview-
based administration, which may not be feasible in a busy
clinical setting, and the absence of questions to assess the
impact of focal cognitive decline in areas such as language.
This paper describes the validation of the Activities of
Daily Living Questionnaire (ADLQ) Scale, an instrument de-
signed to measure ADL in an outpatient clinical population.
This scale was originally developed on the basis of clinical
experience with dementia patients and awareness of areas of
functional decline that are likely to have an impact on ADL.
The ADLQ scale was used in a study by Locascio et al14 and
has been shown to be consistent with other measures in
detecting temporal decline in individuals with probable AD.
This scale provides informant-based assessment of functional
abilities in dementia patients. In addition to a global impair-
ment score, six subscale scores are calculated to assess decline
in the following areas: self-care, household care, employment
and recreation, shopping and money, travel, and communi-
cation. This scale is applicable to a wide range of dementia
syndromes and can be used to track progression of functional
decline over time.
METHODS
The items and categories of activities on the ADLQ scale
are shown in the Appendix. The rater, a primary caregiver, is
instructed to ‘‘score each item according to the patient’s cur-
rent level of ability relative to his/her customary performance
prior to the onset of dementia symptoms.’’ The primary care-
giver was defined as the person identified as having the most
frequent contact with, and responsibility for, assisting the
patient. Even when the ADLQ is completed at follow-up, the
instruction is the same so that the baseline standard for each
individual patient does not change over time.
The scale is divided into six sections addressing
different areas of activity, and each section has from three to
six items. Each of the items is rated on a 4-point scale from
0 (no problem) to 3 (no longer capable of performing the
activity). For each item, there is also a rating (9) provided for
instances in which the patient may never have performed that
activity in the past (‘‘Never did this activity’’), stopped the
activity prior to the onset of dementia (eg, stopped working
before dementia symptoms were apparent), or for which the
rater, for a variety of reasons, may not have information
(‘‘Don’t know’’).
224
Scoring
The total score, which has a range of 0 to 100, is cal-
culated by the formula below:
Sum of all ratings
Functional impairment ¼ 3 100
3 3 total number of items rated
The denominator represents the score that would have
been obtained if the most severe level of impairment had been
indicated for all items rated (excluding those rated ‘‘9’’). The
numerator represents the total of the actual ratings for all items
rated (excluding those rated ‘‘9’’). The resultant score repre-
sents the level of severity of impairment in ADL. The amount
of functional impairment is then rated as ‘‘none to mild’’ (0–33),
‘‘moderate’’ (34–66%), or ‘‘severe’’ (.66%). Functional
impairment scores are calculated for each subscale individ-
ually and for the total of all items.
Participants
Archival data from 140 primary caregivers of patients
with dementia who completed the ADLQ were obtained from
the database of the Northwestern Alzheimer’s Disease Center
Clinical Core registry. Primary caregivers included spouses,
adult children, siblings and close friends. Creation of the
Northwestern Alzheimer’s Disease Center registry was
approved by Northwestern University’s Institutional Review
Board. Additional data were collected from a subset of care-
givers for study 2 (test-retest reliability) and study 3 (concur-
rent validity), and the specific numbers of participants in each
of these studies is described below. The patients had mixed
diagnoses of dementia and consisted of the following groups:
probable/possible AD (N = 65),15 vascular or mixed dementia
(N = 28),16 frontotemporal dementia,17 or primary progressive
aphasia (N = 44),18 and other (N = 3). The dementia group
included a wide range of severity levels as measured by the
Clinical Dementia Rating Scale (CDR)19 (average CDR, 1.0;
range, 0.5–3) and the Mini-Mental State Examination
(MMSE)20 (average MMSE, 21.7; range, 4–30) at the baseline
visit.
RESULTS
Administration and Response Characteristics
None of the caregivers in the study was unable to, or
refused to, complete the ADLQ. The average time of comple-
tion was between 5 and 10 minutes, and none of the partici-
pants reported difficulties in understanding the instructions or
individual items.
For a subset of 50 participants (25 males and 25 females,
randomly selected from the overall group), responses to indi-
vidual items of the scale were evaluated to determine the
number of participants who rated the item as ‘‘Never did this
activity’’ or ‘‘Don’t know’’(ND/DK). The item most frequently
rated ND/DK was 3A-Employment (42%), most likely because
the ND/DK response includes the option ‘‘Retired before
illness.’’ The two other items most frequently rated as ND/DK
were 2E-Home Repairs (38%) and 5A-Public Transportation
(36%). This was accounted for by the fact that many of the
patients (females and males) never had responsibility for home
repairs or regularly used public transportation. All other items
were rated as ND/DK by fewer than 25% of the caregivers
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(average, 8%). We did not think that any of the individual
items were rated as ND/DK with sufficient frequency in either
male or female participants to warrant exclusion from the
overall ADLQ scale.
There were some expected gender differences in indi-
vidual items rated as ND/DK, but only the Household Care
subscale was significantly different between male and female
participants (F1,48 = 4.74, p , 0.05). This difference was due to
that fact that male participants were rated as ND/DK more
frequently than female participants (0%) for the following
items: 2A-Preparing Meals (28%), 2B-Setting the Table
(16%), 2C-Housekeeping (24%), and 2F-Laundry (44%).
Female participants were more frequently rated as ND/DK
on item 2E-Home Repairs (52%, compared with 24% for
male participants). Because the ADLQ scale is based in part on
higher level instrumental ADL, it was expected that differ-
ences in the frequency of responses to certain gender-specific
items would be present between male and female participants.
However, because each participant’s score is based only on the
items applicable to that participant, completely eliminating
gender-related questions would restrict the scope of the ADLQ
and result in a loss of functionally useful information.
Study 1. Relationship Between ADLQ Score
and Other Measures of Severity (MMSE, CDR),
and Changes in ADLQ Over Time
Procedure
Data from the ADLQ, CDR,19 and MMSE20 were avail-
able for 140 participants at the initial and 1-year follow-up visits.
Results
To determine whether the ADLQ was a valid measure of
disease severity, we examined the correlation between MMSE
score and ADLQ at initial visit using a Pearson correlation,
and these values are presented in Table 1. The ADLQ was found
to be highly and negatively correlated with the MMSE,20 a
general measure of cognitive impairment. The ADLQ was also
compared with the CDR,19 a previously validated measure of
clinical progression and staging using a Spearman’s rank cor-
relation, and these results are also given in Table 1.
A repeated-measures ANOVA was used to examine
change in ADLQ, MMSE, and CDR over time. All measures
showed significantly more impairment at the annual follow-up
visit (ADLQ: F1,139 = 73.1, p , 0.001; MMSE: F1,139 = 49.1,
p , 0.001; CDR: F1,139 = 29.8, p , 0.001) providing further
support that the ADLQ is a valid measure of disease pro-
gression. Mean change scores for the total ADLQ, subscales,
and the MMSE are given in Table 2. The average decline per
TABLE 1. Mean Total ADLQ Scores Over Time (N = 140)
ADLQ CDR MMSE
Visit [Mean [Mean Correlation [Mean
Time (SD)] (SD)] w/ADLQ* (SD)]
Initial 33.6 (20.0) 1.0 (0.5) r = .50 21.7 (5.3)
1 year 43.5 (21.0) 1.3 (0.6) r = .55 18.9 (6.7)
*All p , 0.001.
q 2004 Lippincott Williams & Wilkins
Activities of Daily Living Questionnaire
year on the ADLQ (9.8) is consistent with the amount of
decline found on the Disability Assessment for Dementia scale
(11.6) over a 12-month period.13 All of the individual subscales
also showed a significant decline (all p , 0.001), although the
greatest change was noted on measures of instrumental ADL
such as shopping/money, travel, and household care. To deter-
mine whether decline on the ADLQ was related to baseline
level of functioning, a regression analysis was conducted using
baseline MMSE to predict change in ADLQ. The results of the
regression indicated no relationship between baseline MMSE
(F1,138 = 2.00, p = not significant) and amount of decline in
ADLQ.
Study 2. Test–Retest Reliability
Procedure
Twenty-eight caregivers of patients with a clinical diag-
nosis of probable AD based on the NINCDS-ADRDA
criteria15 participated in the study of test-retest reliability. All
28 participants had completed the ADLQ as part of a caregiver
questionnaire packet at the time of the patient’s regularly
scheduled research appointment. A second ADLQ was mailed
to the participants’ home 1 week after the appointment with
written instructions to complete the ADLQ and return it by
mail. The interval between the initial questionnaire and com-
pleted return of the second questionnaire varied between
2 weeks to 2 months, with the average time equivalent to
25.6 days (SD = 12.2 days). To determine whether participants
may have declined during the test-retest interval, a correlation
between the test-retest interval and change in ADLQ score was
performed. The results of this analysis showed a nonsignificant
correlation (r = 0.16; p = 0.40), suggesting an absence of
clinically significant decline during the test-retest interval.
The total score and each of the subscale scores at time 1
and time 2 were analyzed for test-retest reliability. The primary
statistical method used to compare the test and retest measures
was Lin’s concordance coefficient.21 This measure has a value
of ‘‘1’’ if the test and retest scores are identical, and a value of
‘‘0’’ if the measures are not reproducible. Confidence intervals
indicate the likely range of the true concordance. Mean test
and retest scores were compared using the paired t test.22 The
Pearson correlation coefficent was also calculated and tested
against zero using the t test. A nonsignificant paired t test and
a significant Pearson correlation coefficient are necessary but
not sufficient conditions for the test and retest scores to be
TABLE 2. Mean ADLQ Change Scores at 12 Months
(N = 140)
ADLQ Scales Mean (SD)
Self-care 26.6 (13.5)
Household care 211.6 (33.2)
Shopping/money 213.7 (27.2)
Correlation
w/ADLQ* Employment/recreation 27.8 (24.0)
Travel 212.3 (23.9)
r = 2.42
Communication 28.2 (16.5)
r = 2.38
Total ADLQ change 29.8 (13.8)
MMSE 22.7 (4.6)
225
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similar. Kappa scores were used to examine test-retest reli-
ability individually for each test question. Similar to the con-
cordance coefficient, the closer the kappa score is to ‘‘1,’’ the
greater the agreement between time 1 and time 2.
Results
Table 3 gives the means, standard errors and ranges for
the test and retest measures for each subscale. The statistics are
also included for the difference between the two measures. The
p value for the paired t test will not be significant (p . 0.05) if
the test and retest measures have equal means. Table 4 gives
the correlation coefficient, the concordance coefficient, and the
95% confidence interval for the concordance coefficient.
These results indicate that the total ADLQ score is
highly reproducible, with a narrow confidence interval of high
values for the concordance coefficient. Except for the Employ-
ment and Recreation subscale, all other subscales show excel-
lent reproducibility, with concordance coefficients of 0.86 or
higher, and lower confidence limits exceeding 0.73. Although
still within an acceptable range, the Employment and Recre-
ation subscale showed slightly less reproducibility, with a
concordance coefficient lower than the other subscales. This
discrepancy was due primarily to the fact that four caregivers
rated the Employment question as ‘‘No longer works’’ (score = 3)
at time 1 and then rated it as ‘‘Never worked OR retired before
illness OR don’t know’’ (score = 9) at time 2.
Kappa scores to determine test-retest reliability for
individual items were also calculated and are given in Table 5.
Over half of the test items (54%) would be categorized23 as
having ‘‘good’’ Kappa scores (0.61–0.80), 21% have ‘‘very
good’’ scores (0.81–1.0), and 25% had ‘‘moderate’’ Kappa
scores (0.41–0.60). None of the kappa scores were below the
moderate range.
Study 3. Comparison of ADLQ and RIL Scores
Procedure
Concurrent validity of the ADLQ scale was assessed by
comparing ADLQ scores with those of a previously validated
informant-completed instrument, the Record of Independent
Living (RIL).24 The RIL is divided into three sections (Activi-
ties, Communication, Behavior). For the Activities and Com-
munications sections, percent scores represent the degree to
which the patient requires assistance with a variety of ADL.
This is a different way of measuring severity of functional
impairment from the ADLQ. The Behavior section requires
caregivers to rate a list of behavioral features in two ways:
whether or not they were present prior to the onset of dementia
and whether or not they were present after the onset of
dementia. The three RIL subsections were compared with the
ADLQ subscales and total score using Pearson correlation
coefficients. Because the ADLQ does not measure behavioral
changes, we expected a high correlation between the ADLQ
and the Activities and Communication sections of the RIL, and
a low correlation between the behavior section of the RIL and
the ADLQ.
Twenty-nine caregivers of patients with mixed dementia
diagnoses completed the RIL and ADLQ at the same visit. The
diagnostic breakdown of the patients was as follows: 15 prob-
able AD, 1 possible AD, 5 vascular dementia, 5 frontotemporal
dementia FTD, 3 primary progressive aphasia. The order of
completion of the scales was randomized among participants.
Results
The results of the correlation analysis are given in Table
6. As seen in Table 6, the total ADLQ score and Activities
section of the RIL were highly correlated (p , 0.001). All of
the ADLQ subscales were also significantly correlated with the
RIL Activities section. The Communication section of the RIL
was highly correlated with the Communication subscale of the
ADL Scale (p , 0.001). Correlations of the RIL Behavior
subsection with the ADLQ were minimal and ranged between
0.30 and 0.52. This analysis supports the convergent validity
and specificity of the ADLQ by demonstrating that: 1) the total
ADLQ correlates highly with a previously validated ques-
tionnaire measuring daily living activities in individuals with
dementia; 2) the Communication subscale correlates highly
with the Communication section of the RIL; 3) there is min-
imal correlation between the ADLQ subscales and a measure
of behavioral change.
DISCUSSION
This study describes the development and validation of
the ADLQ, a measure of functional capacity in patients with
probable AD and other forms of dementia. This scale has high
test-retest and concurrent validity, and has been shown to
accurately detect temporal decline in individuals with probable
Alzheimer’s Disease both in this and a previous study.14 In

TABLE 3. Test-Retest Reliability Values for Each ADLQ Subscale and Total Score (N = 28)
Test Time 1* Test Time 2 Difference
Subscale Mean (SD) Range Mean (SD) Range Mean (SD) Range p
Self-care 17.4 (19.6) 0–67 19.3 (20.7) 0–92 1.9 (06.8) 211–25 .16
Household 39.9 (33.4) 0–100 44.0 (33.1) 0–100 4.0 (13.8) 220–47 .13
Employment 47.9 (28.9) 0–92 50.2 (28.2) 0–100 2.3 (23.7) 234–100 .61
Shopping 47.1 (39.7) 0–100 49.3 (34.7) 0–100 2.4 (18.5) 234–50 .50
Travel 46.5 (32.9) 0–100 45.4 (31.1) 0–100 21.2 (16.6) 227–45 .71
Communication 40.7 (22.9) 0–87 42.6 (23.9) 0–93 1.9 (10.5) 213–27 .35
Total 38.5 (23.9) 0–81 39.6 (22.4) 0–81 1.1 (06.4) 29–17 .37
*Average time between test 1 and 2 was 25.6 days (range, 14–60 days).

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TABLE 4. Correlation and Concordance Coefficients of TABLE 6. Correlation between ADLQ and RIL Demonstrating
Test-Retest Reliability (N = 28) Concurrent Validity (N = 29)
95% Correlation Coefficients
Correlation Significance Concordance Confidence
ADL RIL Subscales
Subscale Coefficient (p) Coefficient Interval
Subscales Activities Communications Behavior
Self-care 0.95 ,0.001 0.94 0.87–0.97
Self-care 0.75† 0.46* 0.32
Household 0.92 ,0.001 0.91 0.81–0.96
Household 0.84† 0.67† 0.37
Employment 0.65 ,0.001 0.65 0.38–0.82
Employment 0.80† 0.45* 0.41*
Shopping 0.89 ,0.001 0.88 0.76–0.94
Shopping 0.79† 0.62† 0.52*
Travel 0.87 ,0.001 0.86 0.73–0.93
Travel 0.72† 0.39* 0.30
Communication 0.90 ,0.001 0.90 0.79–0.95
Communication 0.69† 0.89† 0.39*
Total 0.96 ,0.001 0.96 0.92–0.98
Total ADL 0.91† 0.71† 0.46*
*p , 0.05.
addition, it is an informant-based rating that is easy to admin- †p , 0.001.
ister and well suited for an outpatient clinical setting. The scale
measures functioning in six areas: self-care, household care,
employment and recreation, shopping and money, travel, and communication. The calculation of subscale scores allows for
the detection of impairments and identification of preserved
areas of functioning in focal dementia syndromes (eg, primary
TABLE 5. Kappa Scores for Items On the ADLQ progressive aphasia), where decline may not be consistent
Item Kappa Score across functional domains or may differ in pattern depending
Self-care on the nature of the dementia.18
Eating 0.91 Unlike the majority of other scales currently available,
Dressing 0.81 the ADLQ measures the patient’s ability to carry out both basic
Bathing 0.65 (eg, self-care) and instrumental (eg, employment) ADL and is
Elimination * sensitive to detecting mild decline as well as more severe sym-
Taking pills 0.78 ptoms of disease progression. In addition, because the scale is
Personal appearance 0.42 rated as a change from the patient’s typical baseline (ie, instruc-
Household care tions are to compare with the patient’s level of ability in each
Meal preparation 0.47 activity prior to the onset of dementia), it allows for flexibility
Setting table 0.73 in scoring so that activities that were never part of the patient’s
Housekeeping 0.77 behavioral repertoire are not counted in the total score. This
Home maintenance 0.53 also helps correct for gender differences in customary respon-
Home repairs 0.64 sibilities in this older population.
Laundry 0.78 The ADLQ was sensitive to functional changes in indi-
Employment and recreation viduals with mild to moderate dementia severity as measured
Employment 1.00 by a dementia screening measure (MMSE) well as by a stan-
Recreation 0.67 dardized rating scale (CDR). In addition, the ADLQ was appli-
Organizations 0.86 cable to a wide range of dementia diagnoses. Although we did
Travel 0.85 not include a sample of individuals with mild cognitive impair-
Shopping and money ment without dementia, it seems that the items may not be
Food shopping 0.70 sufficiently sensitive to detect changes in functional capacity
Handling cash 0.66 in that population without modifications. Such modifications
Managing finances 0.60 are being considered, however, because of the need for ADL
Travel measures sensitive to early functional change in older indi-
Public transportation 0.58 viduals at a time when standardized neuropsychological mea-
Driving 0.92 sures may not detect abnormalities.
Mobility in neighborhood 0.76 Most ADL scales have been designed to detect func-
Travel outside familiar 0.54 tional changes associated with AD since it is the most common
Communication cause of dementia in the elderly. The ADLQ also measures
Using telephone 0.71 changes in communication ability and may be useful in detect-
Talking 0.71 ing functional decline in patients with PPA or other focal
Understanding 0.63 dementia syndromes. Individuals with these deficits may have
Reading 0.42 difficulties in a variety of activities due to these primary def-
Writing 0.74 icits; thus, the total score may show change, but the groups
are unlikely to be distinguished on the basis of subscale score
*Kappa score for this item = 0 because all but two respondents rated the item as ‘‘0’’
for both time 1 and time 2. differences. Further studies are required on larger samples of
patients with different forms of dementia to determine if there

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are distinctive profiles on this measure. In addition, although
the current sample size was not sufficient for a principal compo-
nents analysis of the ADLQ subscales, additional data are being
collected so that this issue can be addressed in a future study.
One potential limitation of the ADLQ was that it was
developed on the basis of clinical experience and there was no
caregiver involvement in the creation of the specific test items.
Although the scale was developed primarily for use by clini-
cians and, in that regard, has been shown to have good reliability
and validity, a future study may be warranted to determine the
degree to which ADLQ test questions correspond to areas of
concern raised by caregivers, and whether scores on the ADLQ
can be used in long-term care and treatment planning.
The ADLQ is a useful adjunct to the evaluation of the
individual with dementia. It provides a measure of the extent
of functional decline that can be measured over time. This
provides valuable information that physicians can potentially
use to assess the impact of pharmacological treatment on the
course of the dementia. It also can be used to counsel care-
givers about areas of daily living that may require more sup-
port or intervention.
APPENDIX. Activities of Daily Living Questionnaire (ADLQ)
Instructions: circle one number for each item
1. Self-care activities
A. Eating
0 = No problem
1 = Independent, but slow or some spills
2 = Needs help to cut or pour; spills often
3 = Must be fed most foods
9 = Don’t know
B. Dressing
0 = No problem
1 = Independent, but slow or clumsy
2 = Wrong sequence, forgets items
3 = Needs help with dressing
9 = Don’t know
C. Bathing
0 = No problem
1 = Bathes self, but needs to be reminded
2 = Bathes self with assistance
3 = Must be bathed by others
9 = Don’t know
D. Elimination
0 = Goes to the bathroom independently
1 = Goes to the bathroom when reminded; some accidents
2 = Needs assistance for elimination
3 = Has no control over either bowel or bladder
9 = Don’t know
E. Taking pills or medicine
0 = Remembers without help
1 = Remembers if dose is kept in a special place
2 = Needs spoken or written reminders
3 = Must be given medicine by others
9 = Does not take regular pills or medicine OR Don’t know
228
APPENDIX. (continued) Activities of Daily Living Questionnaire
(ADLQ) Instructions: circle one number for each item
F. Interest in personal appearance
0 = Same as always
1 = Interested if going out, but not at home
2 = Allows self to be groomed, or does so on request only
3 = Resists efforts of caretaker to clean and groom
9 = Don’t know
2. Household care
A. Preparing meals, cooking
0 = Plans and prepares meals without difficulty
1 = Some cooking, but less than usual, or less variety
2 = Gets food only if it has already been prepared
3 = Does nothing to prepare meals
9 = Never did this activity OR Don’t know
B. Setting the table
0 = No problem
1 = Independent, but slow or clumsy
2 = Forgets items or puts them in the wrong place
3 = No longer does this activity
9 = Never did this activity OR Don’t know
C. Housekeeping
0 = Keeps house as usual
1 = Does at least half of his/her job
2 = Occasional dusting or small jobs
3 = No longer keeps house
9 = Never did this activity OR Don’t know
D. Home maintenance
0 = Does all tasks usual for him/her
1 = Does at least half of usual tasks
2 = Occasionally rakes or some other minor job
3 = No longer does any maintenance
9 = Never did this activity OR Don’t know
E. Home repairs
0 = Does all the usual repairs
1 = Does at least half of usual repairs
2 = Occasionally does minor repairs
3 = No longer does any repairs
9 = Never did this activity OR Don’t know
F. Laundry
0 = Does laundry as usual (same schedule, routine)
1 = Does laundry less frequently
2 = Does laundry only if reminded; leaves out detergent, steps
3 = No longer does laundry
9 = Never did this activity OR Don’t know
3. Employment and recreation
A. Employment
0 = Continues to work as usual
1 = Some mild problems with routine responsibilities
2 = Works at an easier job or part-time; threatened with loss of job
3 = No longer works
9 = Never worked OR retired before illness OR Don’t know
B. Recreation
0 = Same as usual
1 = Engages in recreational activities less frequently
2 = Has lost some skills necessary for recreational activities
(eg, bridge, golfing); needs coaxing to participate
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APPENDIX. (continued) Activities of Daily Living Questionnaire APPENDIX. (continued) Activities of Daily Living Questionnaire
(ADLQ) Instructions: circle one number for each item (ADLQ) Instructions: circle one number for each item
3 = No longer pursues recreational activities D. Travel outside familiar environment
9 = Never engaged in recreational activities OR Don’t know 0 = Same as usual
C. Organizations 1 = Occasionally gets disoriented in strange surroundings
0 = Attends meetings, takes responsibilities as usual 2 = Gets very disoriented but is able to manage if accompanied
1 = Attends less frequently 3 = No longer able to travel
2 = Attends occasionally; has no major responsibilities 9 = Never did this activity OR Don’t know
3 = No longer attends
6. Communication
9 = Never participated in organizations OR Don’t know
A. Using the telephone
D. Travel
0 = Same as usual
0 = Same as usual
1 = Calls a few familiar numbers
1 = Gets out if someone else drives
2 = Will only answer telephone (won’t make calls)
2 = Gets out in wheelchair
3 = Does not use the telephone at all
3 = Home- or hospital-bound
9 = Never had a telephone OR Don’t know
9 = Don’t know
B. Talking
4. Shopping and money 0 = Same as usual
A. Food shopping 1 = Less talkative; has trouble thinking of words or names
0 = No problem 2 = Makes occasional errors in speech
1 = Forgets items or buys unnecessary items 3 = Speech is almost unintelligible
2 = Needs to be accompanied while shopping 9 = Don’t know
3 = No longer does the shopping C. Understanding
9 = Never had responsibility in this activity OR Don’t know 0 = Understands everything that is said as usual
B. Handling cash 1 = Asks for repetition
0 = No problem 2 = Has trouble understanding conversations or specific words
1 = Has difficulty paying proper amount, counting occasionally
2 = Loses or misplaces money 3 = Does not understand what people are saying most of the time
3 = No longer handles money 9 = Don’t know
9 = Never had responsibility for this activity OR Don’t know D. Reading
C. Managing finances 0 = Same as usual
0 = No problem paying bills, banking 1 = Reads less frequently
1 = Pays bills late; some trouble writing checks 2 = Has trouble understanding or remembering what he/she has read
2 = Forgets to pay bills; has trouble balancing checkbook; needs 3 = Has given up reading
help from others 9 = Never read much OR Don’t know
3 = No longer manages finances E. Writing
9 = Never had responsibility in this activity OR Don’t know 0 = Same as usual
1 = Writes less often; makes occasional spelling errors
5. Travel
2 = Signs name but no other writing
A. Public transportation
3 = Never writes
0 = Uses public transportation as usual
9 = Never wrote much OR Don’t know
1 = Uses public transportation less frequently
2 = Has gotten lost using public transportation Scoring:
3 = No longer uses public transportation For each section (eg, self-care, household care, etc.), count the total
9 = Never used public transportation regularly OR Don’t know number of questions answered (ie, questions that are NOT rated
B. Driving as ‘‘9,’’ Don’t know).
Multiply the total number of questions answered by 3. This equals the
0 = Drives as usual
total points possible for that section.
1 = Drives more cautiously
Add up the total score (ie, the sum of the responses) for that section
2 = Drives less carefully; has gotten lost while driving and divide by the total points possible. Multiply by 100 to get the
3 = No longer drives percent impairment.
9 = Never drove OR Don’t know EXAMPLE:
C. Mobility around the neighborhood If the questions were answered as follows in section 1:
0 = Same as usual A. 0
1 = Goes out less frequently B. 2
2 = Has gotten lost in the immediate neighborhood C. 9
3 = No longer goes out unaccompanied D. 0
9 = This activity has been restricted in the past OR E. 1
Don’t know F. 9

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Johnson et al Alzheimer Dis Assoc Disord
Volume 18, Number 4, October–December 2004

6. Blessed G, Tomlinson BE, Roth M. The association between quantitative

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detecting dementia. Age Ageing. 1997;26:393–400.
or 0.25 times 100 = 25%. 9. Pfeffer R, Kurosaki T, Harrah C Jr, et al. Measurement of functional
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percent impairment score for the whole test. 329.
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