Full text of DOI:10.1093/geront/41.3.374

The Gerontologist
Vol. 41, No. 3, 374–382
Copyright 2001 by The Gerontological Society of America
Are Persons With Cognitive Impairment Able to
State Consistent Choices?
Lynn Friss Feinberg, MSW,1 and Carol J. Whitlatch, PhD2
Purpose: This study examined the decision-making capac-
ity of persons with cognitive impairment with respect to their
everyday care preferences and choices. This is the first in a
series of articles to report on findings from a larger study
that examines choice, decision making, values, prefer-
ences, and practices in everyday care for community-dwell-
ing persons with cognitive impairment and their family
caregivers. Design and Methods: Fifty-one respondent
pairs, or dyads, were interviewed, that is, persons with cog-
nitive impairment (n ꢀ 51) and their family caregivers (n ꢀ
51). All persons with cognitive impairment were inter-
viewed twice within a week using a parallel interview to de-
termine stability and accuracy of responses. The family
caregiver was interviewed once. Results: Persons with
mild to moderate cognitive impairment (i.e., Mini-Mental
State Exam scores 13–26) are able to respond consistently
to questions about preferences, choices, and their own
involvement in decisions about daily living, and to pro-
vide accurate and reliable responses to questions about
demographics. Implications: Including the perspective of
persons with cognitive impairment in both research and
practice has the potential to enhance their autonomy and
improve their quality of life.
baby boomers reach old age in the 21st century and
constraints on public financing for long-term care
continue to mount.
Despite the trend toward earlier diagnosis and
greater public awareness of dementing illnesses, very
little research has focused on the experience of per-
sons with cognitive impairment (i.e., care receivers).
The absence of the perspective of care receivers has
led to a lack of representation of their needs in the
selection of care strategies (Cohen, 1991). One rea-
son for this oversight is that researchers have only re-
cently included persons with cognitive impairment in
studies as “legitimate contributors” to the research
process (Cotrell & Schulz, 1993). As Woods (1999)
has noted, “there has been the assumption that peo-
ple with dementia are unable to communicate in a
meaningful way, invalidating their participation in
decision making about their own situation as well as
rendering their lived experience and their perspective
as being impossible to research” (p. 36). The major
objective of the present study is to reduce this gap in
the existing literature by examining the decision-
making capacity of persons with cognitive impair-
ment with respect to their everyday care preferences
and needs.
According to Stewart, Sherbourne, and Brod
(1996), subjective assessment in cognitively impaired
populations has been ignored because of the pre-
sumed logistical and methodological issues, specifi-
cally regarding comprehension and reliability. As a
result, researchers and practitioners often wrongly
assume that persons with cognitive impairment are
unable to make care decisions for themselves. Re-
cently, however, in both research and practice, there
has been a move to understand better the preferences
and experiences of persons with dementia (Downs,
1997; Kitwood & Benson, 1995; Woods, 1999). To
date, the majority of the research on the emergence
of the person in dementia has been qualitative.
Downs (1997) outlines three areas that have been
studied: (1) the individual’s sense of self; (2) perspec-
tives of persons with dementia; and (3) a person’s
rights. First, a growing body of research suggests that
people with dementia retain a sense of self, despite
cognitive impairment, into the late stages of the ill-
ness (Downs, 1997; Kitwood, 1997; Woods, 1999).
Key Words: Dementia, Decision making, Everyday care,
Preferences
Maintaining independence and control in decision
making are issues of utmost concern to frail elders
and persons with disabilities. Preparing and support-
ing people with chronic illness to maintain control in
the face of declining physical and cognitive abilities
will become even more important to society as the
This study was supported by a grant from The Robert Wood Johnson
Foundation under its national initiative, Independent Choices: Enhancing
Consumer Direction for People With Disabilities. The assistance of Shan-
dra Tucke in data analysis is gratefully acknowledged. We thank the
anonymous reviewers for their helpful and constructive suggestions on an
earlier version of this article.
Address correspondence to Lynn Friss Feinberg, MSW, Family Care-
giver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104.
E-mail: lfeinberg@caregiver.org
1Family Caregiver Alliance, San Francisco, CA.
2The Benjamin Rose Institute, Cleveland, OH.
374
The Gerontologist

Further evidence that persons with dementia are able
to report on their situation comes from the growing
number of support groups and other services devel-
oped specifically for persons with early-stage demen-
tia (Brod, Stewart, Sands, & Walton, 1999; Yale,
1999). Lastly, there is a growing trend toward ac-
knowledging the rights of people with dementia
(Downs, 1997). A gap still exists, however, in ex-
ploring those individuals’ values, preferences, and
decision making for daily care situations.
ented to time and place may still be capable of mak-
ing choices and expressing preferences about many
aspects of his or her care (Brechling & Schneider,
1993).
As the disease progresses, it becomes nearly im-
possible for the care receiver to voice preferences for
care. During the later stages, the family caregiver
faces the critical task of determining what services
are available to keep their loved one at home, or
whether another living arrangement is called for,
such as a move to a nursing home. Unless the care re-
ceiver had previously expressed preferences for ev-
eryday care, it is nearly impossible to know what the
individual wants and needs (Cotrell & Schulz, 1993).
Even when a caregiver makes decisions that reflect
the care receiver’s clearly stated choices, the family
may experience considerable anguish and conflict.
The lack of guidelines to help with identifying values
and care preferences integral to the decision-making
process, as well as the high costs of care, can amplify
the family’s distress.
Case studies (Cohen & Eisdorfer, 1986) and more
recent research (McHorney, 1996; Parmelee, Law-
ton, & Katz, 1989) suggest that individuals who are
mildly to moderately cognitively impaired are able to
articulate their feelings, concerns, and preferences
and provide self-assessments of their health status
and quality of life. Direct assessment of the quality of
life of mildly to moderately cognitively impaired per-
sons has been found to be reliable and valid (Brod et
al., 1999; Logsdon & Teri, 1996). For example,
McHorney (1996) reports that all 36 subjects who
scored below 23 on the Mini-Mental State Exam
(MMSE; Folstein, Folstein, & McHugh, 1975) were
as able as cognitively intact older respondents to pro-
vide reliable, valid, self-report information about
their health status on the Medical Outcomes Study
SF-36 Health Survey. Similarly, persons with Alzhei-
mer’s disease scoring from 10–28 on the MMSE
were able to complete a brief quality-of-life measure
(Logsdon & Teri, 1996). Although Logsdon and Teri
found that persons with cognitive impairment were
able to provide a valid and reliable assessment of
their own quality of life, they also found that the care
receivers’ and caregivers’ reports were related, but
not identical. Brod and colleagues (1999) developed
a 29-item instrument assessing quality of life and
tested it with 99 persons with mild to moderate de-
mentia (MMSE scores of 13–23). They found the in-
strument to be reliable with evidence of validity;
nearly all (96%) were able to respond to questions
appropriately. Although these few studies suggest
that persons with mild to moderate cognitive impair-
ment can often respond to carefully designed instru-
ments, it remains unclear when, in the course of de-
menting illness, individuals are no longer able to
provide reliable reports (Logsdon & Albert, 1999).
Increasingly, most researchers studying quality of
life support the notion that assessment of quality of
life can and should only be made “by persons for
themselves, about themselves” (Jennings, 1999, p.
97). In a study of medical decision making with 52
Even with the emerging interest in studying per-
sons with dementia, the caregiving literature has gen-
erally emphasized either the family caregiver or the
cognitively intact care receiver. Studies that examine
both the family caregiver and the care receiver, with
or without cognitive impairment, are rare (Young,
1994). A gap also exists with regard to dyadic re-
search, particularly when persons with cognitive im-
pairment are involved. This body of research, which
draws upon the work in marriage and family, typi-
cally examines the marital or parent–child dyad,
with little or no attention paid to persons with cogni-
tive impairment. The research on congruence be-
tween family members and older persons is also a
relatively new area of study (Horowitz, 1998), espe-
cially within the cognitively impaired population.
The advances in diagnostic testing and the trend
toward earlier diagnosis have created an opportunity
for earlier and more consistent involvement in every-
day care decisions for both the person with cognitive
impairment and the family caregiver. Although the
onset of cognitive impairment adversely affects a
person’s intellectual functioning, judgment or the
ability to make decisions about his or her care are
not uniformly impaired (Post & Whitehouse, 1995;
Rabins & Mace, 1985; Sansone, Schmitt, & Nichols,
1996).
According to Wetle (1995), “determining the ca-
pacity to make decisions is an inexact science” (p.
67). Most ethicists, clinicians, and researchers prefer
the concept of “decisional capacity,” recognizing
that persons with cognitive impairment may be capa-
ble of making some decisions but not others (Kapp,
1990; Sabatino, 1996). Thus, depending on the situ-
ation, persons with cognitive deficits may have vary-
ing abilities in matters of decision making. For exam-
ple, Mrs. M. may be able to decide who should make
health care decisions for her even if she is no longer
competent to shop for groceries. To date, no valid,
standardized method exists to determine decisional
capacity (Gerety et al., 1993; Kapp & Mossman,
1996).
Following diagnosis, mildly to moderately im-
paired persons and their families often begin plan-
ning for and adapting to the disease or disorder.
Family members gather information about the dis-
ease process, talk with others who have had similar
experiences, or determine potential service options.
Persons with cognitive impairment may verbalize to
family and friends their preferences for care, al-
though this is not always the case. A person in the
early stage of dementia who is confused and disori-
Vol. 41, No. 3, 2001
375

nursing home resident respondents with mild to
moderate dementia and their proxies, the respon-
dents were able to clearly communicate their desires
and demonstrated decision-making consistency; only
13% of the respondents made inconsistent decisions
(Gerety et al., 1993). Further, research suggests that
about 30% of institutionalized adults with dementia
can consistently make decisions about their health
care, including, but not limited to, “do not resusci-
tate orders” and durable powers of attorney (San-
sone et al., 1996).
tia (9.8%), Parkinson’s disease (7.8%), and other
disorders (5.9%). The average MMSE score of care
receivers was 20.8 (SD ꢀ 4.06, range 13–26), with
two thirds (67%) considered mildly cognitively im-
paired (MMSE scores between 20 and 26) and one
third (33%) considered moderately cognitively im-
paired (MMSE scores between 13 and 19).
The family caregivers were most likely women
(78.4%), White (78.4%), married (80.4%), and were
on average 64.5 years of age (SD ꢀ 14.6, range 30–
90 years), although over half (51%) were at least 65
years of age or older. More than two thirds (68.7%)
were spouses and one third (31.3%) were adult chil-
dren caring for a parent or parent-in-law. The major-
ity (84.3%) had at least some college education.
Most caregivers (23.5%) reported an annual family
income between $40,000 and $49,000 a year (1997
dollars) with nearly two thirds (62.6%) reporting an-
nual family incomes over $30,000. Almost half were
retired (49.0%), and one third (33.3%) were in the
labor force. On average, caregivers had been caring
for their relatives for 3.1 years (SD ꢀ 3.4, range 1–23
years) and provided 80 hours of care per week (SD ꢀ
50.8, range 7–168 hours).
Purpose of the Study
Building on this past body of work, the present
study is one of the first to examine choice and deci-
sion making in everyday care for community-dwell-
ing persons with cognitive impairment and their fam-
ily caregivers, with a focus on perceptions, values,
preferences, and practices in home- and community-
based care. This article is the first in a series to report
on findings from this study. We address the follow-
ing research question: Are persons with cognitive im-
pairment able to answer questions about their demo-
graphics, preferences, and choices, and their own
involvement in decisions about daily living? Specifi-
cally, we report on the reliability and/or accuracy of
the responses given by individuals with cognitive im-
pairment. Determining a person with cognitive im-
pairment’s level of reliability and accuracy, and abil-
ity to state consistent preferences and choices is a
necessary first step before exploring the decision-
making process within the dyad (i.e., the care re-
ceiver and their family caregiver) and the congruence
between the care receiver’s preferences and the needs
and practices of the caregiver.
Procedure
Prospective participants were sent a letter describ-
ing the study and asking for their participation. Dy-
ads were then screened by telephone to determine
preliminary eligibility. To be eligible, family caregiv-
ers had to be: (a) the spouse or adult child of the per-
son with cognitive impairment, and (b) the primary
caregiver. The person with cognitive impairment had
to: (a) have a confirmed physician’s diagnosis of an
adult-onset brain disease/disorder; (b) be living at
home (i.e., living in the community rather than an in-
stitutional setting); and (c) be mildly to moderately
cognitively impaired (scores between 13–26, as mea-
sured by the MMSE).
Methods
Participants
The sample consisted of 51 respondent pairs or
dyads. Individuals with cognitive impairment (n ꢀ
51) and their family caregivers (n ꢀ 51) were re-
cruited from Family Caregiver Alliance’s (FCA) cli-
ent lists in the San Francisco Bay Area and commu-
nity outreach. FCA supports and assists families and
caregivers of adults with cognitive impairment through
education, advocacy, services, and research.
The majority of care receivers were men (68.7%),
White (74.5%), married (78.4%), and averaged 75.6
years of age (SD ꢀ 10.0, range 39–89). Most
(68.6%) had at least some college education. The
care receivers with adult children as caregivers (n ꢀ 16)
had annual incomes between $8,000 and $29,000;
those care receivers with spouse caregivers (n ꢀ 35)
had median incomes between $40,000 and $50,000
a year. All care receivers had memory problems that
had been diagnosed by a physician, with the most
commonly diagnosed brain disease/disorder being
Alzheimer’s disease (51.0%), followed by other de-
mentias such as frontal lobe, lewy body or vascular
dementia (13.7%), stroke (11.8%), nonspecific demen-
If the caregiver agreed to participate, the research
coordinator then telephoned the person with cogni-
tive impairment to determine their willingness and
availability to participate. Both the caregiver and the
care receiver had to give verbal consent over the tele-
phone to be scheduled for the interviews, and had to
give written consent at the time of the first interview
to participate in the research. Final eligibility was de-
termined during the care receiver’s Time 1 interview
once the MMSE was scored, thus determining the in-
dividual’s level of cognitive impairment.
Of the 233 families identified, 21 (9%) could not
be reached by phone to conduct the preliminary
screening and 83 (36%) were found to be ineligible.
The most frequent reasons for ineligibility were: care
receivers being too impaired to be interviewed based
on caregiver reports (45%); caregivers not meeting
the initial inclusion criteria (18%); the care receiver
being unable to participate (15%); placement of the
care receiver in a skilled nursing facility or residential
care (8%); caregiver moving out of the area (8%); or
the death of the care receiver (6%).
376
The Gerontologist

Thirty-four percent (n ꢀ 44) of the remaining 129
caregivers refused to participate for a variety of rea-
sons, yielding a 66% acceptance rate. The most fre-
quent reasons cited by the caregiver for choosing not
to participate included the following: unwilling to
participate or not giving an explanation for refusal
(66%); the caregiver was too busy (14%); or other
reasons (20%). Of the 85 eligible dyads, two were
used for interviewer practice, yielding a final prelimi-
nary sample of 83 caregiver/care receiver dyads.
About one third (n ꢀ 27 or 32%) of 83 eligible care
receivers were screened out at the Time 1 interview,
with 12 (44%) scoring less than 13 on the MMSE and
15 (56%) scoring above 26 on the MMSE. In addition,
three (4%) care receivers were unable to complete the
written consent process at the Time 1 interview; one
(1%) care receiver declined to continue after the first
interview; and one (1%) caregiver declined to partici-
pate at the scheduled time of the caregiver interview.
Following the telephone screening, the research
coordinator scheduled the in-person interviews. Ex-
perienced and trained individuals interviewed the
caregiver and care receiver separately. For the most
part, interviews were conducted with the dyads in
their own homes. Every effort was made to ensure
that the same interviewer was assigned to interview
each member of the dyad.
For this study, three interviews were conducted per
dyad. The interviewing sequence and process required
that the person with cognitive impairment be inter-
viewed first to determine final eligibility with the
MMSE score. Within one week, the family caregiver
was interviewed and the person with cognitive impair-
ment was interviewed a second time to investigate the
reliability and stability of their responses (Sansone et
al., 1996) and to ask additional questions. We chose
this sequence and timing of interviews for two rea-
sons: (1) to limit the potential for respondent attrition;
and (2) because we recognized that the questions re-
garding daily living preferences and care decisions
could generate discussion between the family care-
giver and the care receiver between interviews that
could affect their responses. Interviewers contacted
the family caregiver the day before or the day of the
interview to confirm date, time, and location. For the
person with cognitive impairment, the interviewers
generally contacted them the day of the interview to
make certain they were able and willing to participate.
Data collection began in July 1998 and continued
for 10 months through April 1999 to achieve a final
sample of 51 dyads (3 interviews per dyad or 153 to-
tal completed interviews). On average, the Time 1 in-
terview with the person with cognitive impairment
lasted 42 minutes (range: 24–103 minutes), and the
Time 2 interviews, conducted one week later, took
50 minutes to complete (range 25–100 minutes). The
interviews with the caregivers lasted longer, averag-
ing 107 minutes (range: 27–193 minutes).
prehension, interview length, and appropriateness of
vocabulary and content areas and revised as appro-
priate. For the present study, we report results based
on five measures drawn from the larger study.
The Mini-Mental State Examination (MMSE).—The
MMSE is an 11-item, widely used measure to assess
seven dimensions of cognitive functioning on a 0 to
30-point scale: orientation and time (5 points), orien-
tation to place (5 points), registration (3 points), at-
tention and calculation (5 points), recall (3 points),
language (8 points), and visual construction (1 point).
Lower scores indicate greater cognitive impairment.
For purposes of the present study, the care receivers
were categorized into three groups based on their
MMSE score in the following way: low scores be-
tween 13–15 (n ꢀ 8) indicating greater cognitive im-
pairment; medium scores between 16–23 (n ꢀ 27);
and high scores between 24–26 (n ꢀ 16) indicating
mild cognitive impairment.
The Correct Scale.—Adapted from the work of
Sansone and colleagues (1996), the Correct Scale as-
sesses the care receiver’s ability to respond accurately
to 10 questions about specific factual information
(i.e., day, month, and year of birth; number of chil-
dren and siblings; education level; marital status; re-
ligious affiliation; and age). In Sansone and associ-
ates’ (1996) original study, a care receiver had to
state her/his birth day, birth month, and birth year
correctly in order to be scored as correct for date of
birth. We decided to use each piece of information
separately so that our version of the Correct Scale
has three items rather than one for birth date. This
revised scoring of date of birth more accurately rep-
resents the care receiver’s ability to answer questions
correctly. Also, Sansone and colleagues used this
measure with a sample of nursing home residents
with dementia, and respondent answers were verified
by the nursing home’s social service files. For the
present study, we asked caregivers the same set of
questions with the thought that the caregivers would
be able to verify the care receiver’s responses.
Demographic Questions.—Questions regarding ed-
ucational level, ethnicity, religiosity, and such were
asked of both the care receiver and the caregiver. Ad-
ditional questions asked only of the caregiver related
to their own employment status, living arrangement,
and the number of hours a week providing care. As
noted above, the care receiver was asked 10 demo-
graphic questions adapted from the Correct Scale at
both the Time 1 and Time 2 interviews to assess accu-
racy and consistency of responses at two time points.
In addition to obtaining the caregiver’s demograph-
ics, the caregiver was also asked to confirm their rela-
tives’ responses to the demographic questions.
The Preference Scale.—Again, drawing upon the
work of Sansone and colleagues (1996), the Prefer-
ence Scale assesses the care receivers’ ability to
choose or state a preference consistently over a one-
Measures
All measures for the larger study were pretested
with a sample of six dyads to determine ease of com-
Vol. 41, No. 3, 2001
377

week period. Respondents were asked four ques-
tions: “Do you like to watch television?” (yes/no);
“Do you prefer winter or summer?” (winter or sum-
mer); “Which of these colors do you like the best?”
(yellow, green or red); and “Which of these three
ways do you prefer to have your eggs cooked?”
(scrambled, fried, boiled, or don’t eat eggs). Items
were scored so that the respondents’ ability to give a
response was coded as 1; thus, responses could range
from 0 to 4, with higher scores indicating greater
ability to state a preference.
with interval data (i.e., age and number of children)
were similarly tested using paired t tests.
To determine accuracy, Kappa, chi-square, or t-test
statistics were again computed, this time comparing
care receivers’ responses to the 10-item Correct Scale
(Sansone et al., 1996) to those of their caregivers. Care-
givers’ responses were compared against the care re-
ceivers’ responses at both Time 1 and Time 2. For
analyses of test–retest reliability and response accu-
racy, we deleted cases when either respondent an-
swered a question, “I don’t know.”
Results
Involvement in Everyday Living.—These items were
adapted from measures used in previous studies (Ci-
cerelli, 1992; High & Rowles, 1995; Pratt, Jones,
Shin, & Walter, 1989; and Wetle, Levkoff, Cwikel,
& Rosen, 1988) to assess preferences for decision
making about routine daily living. Participants were
asked three questions: “Who is the person most in-
volved in making decisions about how you spend
your day?” (care receiver, caregiver, other relative,
friend/neighbor, paid helper, other); “How much are
you involved in making decisions about how you
spend your day?” (not at all involved, a little in-
volved, fairly involved, very involved); and “How do
you feel about your involvement in making decisions
about how you spend your day?” (not enough in-
volvement, the right amount of involvement, too
much involvement). Higher scores reflect greater lev-
els of involvement by the care receiver.
Test–Retest Reliability
Results revealed that, for the sample as a whole,
care receivers were able to provide answers with sig-
nificant levels of agreement to nearly every question
(see Table 1). In fact, of the 17 questions asked of
care receivers, only one (the care receiver’s age)
yielded responses that were significantly different
from Time 1 to Time 2. Even among those care re-
ceivers whose MMSE scores were lowest (MMSE
13–15, n ꢀ 8), significant levels of agreement were
obtained for all but two questions: favorite season
and favorite color. For these two questions, 17% and
40% of care receivers, respectively, were found to
have unreliable answers. On the other hand, in this
same subset, perfect agreement was obtained for
marital status, whether the care receiver has children,
and the question about how the care receiver feels
about his/her level of involvement in daily living.
Care receivers with medium MMSE scores (16–
23, n ꢀ 27) answered reliably to all questions but fa-
vorite season and how involved the care receiver is in
making decisions about how to spend his/her day.
For these two questions, 19% and 52% of care re-
ceivers, respectively, were found to have unreliable
answers. Perfect agreement was found for three ques-
tions: marital status, religion, and watching TV.
Those with the highest MMSE scores (24–26, n ꢀ
16) answered only two questions unreliably: “Do
you like to watch TV?” and “How do you feel about
your level of involvement in your care?” For these
two questions, 13% and 33% of care receivers, re-
spectively, answered unreliably. Perfect agreement,
with all care receivers providing the same answer at
both the Time 1 and Time 2 interviews, was reached
by this high MMSE group for six questions: day,
month, and year of birth; marital status; children;
and siblings.
Data Analysis
Care receivers were asked 17 questions to deter-
mine the test–retest reliability of their responses for
the Time 1 and Time 2 interviews: 10 demographic
questions (birthday, age, marital status, etc.), 4 ques-
tions from the Preferences Scale (favorite color, fa-
vorite season, etc.) and 3 questions about their own
involvement in everyday living. Further, to determine
if level of impairment was related to reliability of re-
sponses, care receivers were divided into three
groups depending on their MMSE score (i.e., low
MMSE: 13–15 [n ꢀ 8]; medium 16–23 [n ꢀ 27];
high 24–26 [n ꢀ 16]).
The Kappa statistic, a coefficient for nominally
scaled data (Roberto, 1999), was used to determine
if there was significant agreement between the re-
sponses given at Time 1 and Time 2. The advantage
of the Kappa coefficient over percentage agreement
is that it takes into account chance agreement (Cori-
ell & Cohen, 1995; Pett, 1997). Thus, regardless of
the number of nominal level responses possible,
Kappa is based on exact agreement rather than near-
ness of response. Kappa values that approach 1.00
reflect that there is perfect agreement, whereas values
that approach 0.00 reflect responses that would be
expected by chance. For these analyses, we consid-
ered p values less than .05 as sufficient indicators of
test–retest reliability. When Kappa could not be
computed for nominal level data due to empty cells,
chi-square statistics were used instead. Responses
Accuracy
In addition to answering reliably to basic ques-
tions such as birthday, age, and marital status, it was
also important that care receivers were able to an-
swer questions with a high degree of accuracy (i.e.,
validity). Accuracy was measured by the extent of
agreement between the care receiver and the care-
giver. Responses from the 10-item Correct Scale
were analyzed twice, first comparing the caregiver’s
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Table 1. Test–Retest Reliability of Care Receivers’ (CRs’) Responses
All Cases
Low MMSE
Med MMSE
High MMSE
Item
N ꢀ 51
n ꢀ 8
n ꢀ 27
n ꢀ 16
Demographics
Birth day
Birth month
Birth year
Age
Marital status
Children (yes/no)
No. of children
Education
6.533c
0.954a
2.677c
—
2.533c
0.855a
1.200c
1.000d
1.000a
1.000a
constante
1.111c
0.788a
0.696a
0.000c
0.955a
0.000c
2.000d
1.000a
0.835a
0.000d
0.855a
1.000a
0.620a
1.000a
1.000a
1.000a
ꢁ1.000d
1.000a
1.000a
ꢁ1.000d
0.922a
0.033c
1.000a
0.912a
ꢁ0.423d
0.874a
0.910a
0.746a
Religion
Siblings
1.000a
Preferences
TV
Season
Color
Eggs
0.728a
0.547a
0.695a
0.706a
constante
—
1.000a
—
—
0.755a
0.896a
0.778a
—
0.700a
0.621a
0.810a
CR’s Involvement In Everyday Living
Who most involved?
How involved is CR?
How does CR feel about involvement?
0.383a
0.357a
0.436a
1.250c
3.833c
1.000a
0.000c
—
0.500b
0.605a
—
0.675c
Note: MMSE ꢀ Mini-Mental State Examination; — indicates unreliable test–retest responses.
aThese values represent Kappas where p ꢂ .01.
bThis value represents a Kappa with p ꢂ .05.
cChi-square values were used when Kappa could not be computed due to empty cells. Nonsignificant values (i.e., p ꢃ .05) indicate no
significant differences in responses (i.e., caregiver receiver responses do not significantly vary from Time 1 to Time 2).
dT values were used for interval data. Nonsignificant values (i.e., p ꢃ .05) indicate no significant differences in responses (i.e., care re-
ceiver responses do not significantly vary from Time 1 to Time 2).
eT value (number of children) or chi-square value (TV) could not be computed because the distributions were exactly the same, indi-
cating perfect agreement.
answers with the care receiver’s at Time 1, then at
Time 2. The average number of correct responses for
the Correct Scale was 6.61 (SD ꢀ 1.4) for the Time 1
interview and 6.49 (SD ꢀ 1.35) for the Time 2 inter-
view (range 2–8 correct responses for both Time 1
and 2). More than three fourths of the care receivers
were able to answer at least 7 of 10 questions accu-
rately during Time 1 (84.3%) and Time 2 (82.3%).
In general (see Table 2), the results indicate that
care receivers were able to answer questions with a
high degree of accuracy. Across the entire sample,
significant levels of agreement between care receivers
Table 2. Agreement Between Care Receiver and Caregiver Responses on Demographic Items
Time 1
Time 2
All Cases Low MMSE Med MMSE High MMSE All Cases Low MMSE Med MMSE High MMSE
Demographic Items
N ꢀ 51
n ꢀ 8
n ꢀ 27
n ꢀ 16
N ꢀ 51
n ꢀ 8
n ꢀ 27
n ꢀ 16
Birth day
5.448c
0.955a
3.723c
0.968d
1.679c
—
0.846a
0.667c
2.143c
1.266d
0.711a
—
0.969c
0.969c
0.969c
ꢁ0.462d
0.000c
—
1.000a
1.515c
1.000a
0.000d
1.000a
0.133c
—
4.305c
0.978a
2.244c
1.981d
1.679c
0.382a
ꢁ1.278d
0.572a
0.913a
0.702a
0.855a
1.000a
0.938c
1.034d
0.771a
—
0.956a
0.957a
0.969c
2.001d
0.000c
0.598a
0.214d
0.662a
0.943a
0.620a
1.000a
1.000a
2.182c
—
Birth month
Birth year
Age
Marital status
Children (yes/no)
No. of children
Education
Religion
1.000a
0.092c
—
ꢁ1.787d
0.624a
0.942a
0.864a
0.607d
—
ꢁ0.225d
0.758a
0.945a
0.830a
0.607d
2.952c
1.000a
—
0.725c
1.000a
1.000a
0.349c
0.123c
1.000a
0.788a
0.714b
Siblings
Note: MMSE ꢀ Mini-Mental State Examination; — indicates responses that are inaccurate.
aThese values represent Kappas where p ꢂ .01.
bThis value represents a Kappa with p ꢂ .05.
cChi-square values were used when Kappa could not be computed due to empty cells. Nonsignificant values (i.e., p ꢃ .05) indicate no
significant differences in responses (i.e., caregiver and care receiver do not significantly disagree).
dT values were used for interval data. Nonsignificant values (i.e., p ꢃ .05) indicate no significant differences in responses (i.e., care-
giver and care receiver do not significantly disagree).
Vol. 41, No. 3, 2001
379

at the Time 1 interview and their caregivers were
found for all demographic questions with one excep-
tion: “Do you have any children?” At the care receiv-
ers’ Time 2 interview, there was significant agree-
ment among care receivers’ and caregivers’ answers
to all demographic questions.
had attended college level courses, whereas the hus-
band made a point to mention the coursework. For
these and other questions, we relied on the comments
of the interviewers to help determine if the caregiver
and the care receiver were congruent in their re-
sponses. Similarly, in the total sample, dyads were
found to be inaccurate or incongruent when re-
sponding to the question, “Does the care receiver
have children?”
Similar results were found when analyses focused
on level of cognitive impairment, that is, low, me-
dium, and high MMSE scores. Specifically, those
with the lowest MMSE scores responded accurately
to nearly all questions at both Time 1 and Time 2.
One question was answered inaccurately at Time 1
and Time 2 (whether the care receiver has children),
whereas level of education was answered inaccu-
rately at Time 1 and whether the care receiver has
siblings was answered inaccurately at Time 2. Care
receivers with medium MMSE scores responded ac-
curately to all but one question at Time 1 (whether
the care receiver has children) and reported accu-
rately to all questions at Time 2. Care receivers with
the highest MMSE scores were inaccurate when an-
swering questions about the number of children at
Time 1 and Time 2, and age at Time 2.
This finding in the larger sample most likely re-
flects the results of the inaccurate responses of the
low and medium MMSE groups. In other words,
rather than indicating that persons with cognitive
impairment uniformly respond inaccurately to a
question about whether they have children, the re-
sults suggest this is true for persons who are more
cognitively impaired. It could also be that persons
who are more cognitively impaired misunderstood
the question as asking, “Have you ever had chil-
dren?” rather than “Do you have children who are
currently alive?” This question may require higher
cognitive functioning than other questions. In addi-
tion, it is puzzling why dyads with higher functioning
care receivers were incongruent in answering ques-
tions about the number of children. These results
reveal gaps in our understanding of “knowledge
congruence” (Whitlatch, 2001). Few studies have ex-
amined the level of agreement between family care-
givers and cognitively impaired care receivers about
subjective information (e.g., care preferences) or ob-
jective information (e.g., demographics). It will be in-
teresting to see if our findings change as we examine
these dyads over time.
These findings suggest that family caregivers
should not be assumed to be the “gold standard” for
determining whether persons with cognitive impair-
ment are able to accurately answer questions that re-
late to specific demographics. The findings also
suggest that the level of “agreement congruence”
(Whitlatch, 2001) within a dyad (i.e., how much two
persons within a dyad agree on certain issues or
questions) may be influenced as much by the per-
son’s cognitive impairment as by the caregiver’s lack
of knowledge.
In this study as well as others (Ashford et al.,
1992; Willis et al., 1998), the MMSE was not found
to be a sensitive measure of competency relating to
capacity to state preferences and make daily care
decisions. Although the MMSE, a measure of glo-
bal cognitive impairment, has been widely used to
screen for cognitive function, no valid, standardized,
straightforward method exists to determine deci-
sional capacity (Gerety et al., 1993; Kapp & Moss-
man, 1996). In discussing the interviewing experi-
ence, the research interviewers in this study stated
that some of the care receivers who screened out on
the MMSE because of low scores would have been
able to participate in the study and express valid and
consistent preferences.
Discussion
The results of this study indicate that persons with
mild to moderate cognitive impairment (i.e., MMSE
from 13–26) are able to respond consistently to ques-
tions about preferences, choices, and their own in-
volvement in decisions about daily living, and pro-
vide accurate and reliable responses to questions
about their own demographics. These data support
previous research findings that persons with demen-
tia possess sufficient capacity to state specific prefer-
ences and make care-related decisions (Gerety et al.,
1993; Sansone et al., 1996).
It could be argued that the promising results re-
lated to test–retest reliability could be a result of
memory effects that would have inflated our reliabil-
ity estimates. However, given the small total sample
size in this exploratory study, the even smaller sam-
ple sizes when the analyses compared low, medium,
and high MMSE groups, and our conservative p val-
ues, we found that the number or proportion of dy-
ads that were required to be congruent in order to
demonstrate statistically significant levels was quite
high. In the low MMSE group, for example, seven
out of eight dyads had to be reliable in order to reach
statistical significance. In addition, the cognitively
impaired subsamples varied only slightly in the num-
ber of questions that were not reliable. If our results
had been influenced by memory effects, we would
have expected an increased number of reliable re-
sponses as level of impairment decreased (i.e., higher
MMSE scores).
With few exceptions (e.g., education, questions
about children), family caregivers were able to con-
firm the care receivers’ responses. For example, care-
givers and care receivers did not always agree about
the care receiver’s level of education. In one dyad,
the caregiving wife did not mention that her husband
It was also the interviewers’ experience that the
majority of the participants—both the care receiver
and the caregiver—appreciated the opportunity to
380
The Gerontologist

discuss issues related to preferences, values, and daily
care decisions. When asked if they would like to par-
ticipate in follow-up studies, virtually all (over 90%)
dyads said they would be interested in participating
in follow-up research. Several caregivers said that the
questions asked during the interviews motivated them
to seek additional support and assistance for them-
selves and the person with cognitive impairment.
Many health care and social service practitioners
have regarded cognitive impairment as a potential
barrier to informed decision making and the ability
to state wishes, values, and preferences. The results
of this study suggest that persons with early to mod-
erate cognitive impairment may well possess the ca-
pacity to express daily preferences for care and
should be encouraged to discuss their everyday care
wishes with their family caregiver. In turn, this
would assist family members by helping them to bet-
ter understand the wishes and preferences of their
loved ones earlier in the disease process and before
they, the family caregivers, inevitably must make dif-
ficult and often agonizing day-to-day long-term care
decisions.
The findings of this study are especially important
when considered within the context of our larger
study. The aim of our work in the larger study is to
examine choice and decision making in everyday
care for persons with cognitive impairment and their
family caregivers. This study differs from previous
research on decision making by its focus on: (1) a
community-dwelling, cognitively impaired popula-
tion; (2) the dyad, i.e., the person with cognitive im-
pairment and the family caregiver; and (3) the explo-
ration of values, preferences, and decision making
for daily care. Given this broader context, our next
task is to move beyond the Correct Scale and Gen-
eral Preference Scale (Sansone et al., 1996) developed
to assess the reliability of specific factual information
(e.g., current marital status) and general preferences
(e.g., favorite season, like to watch TV), to answer
more specific questions about the actual everyday
values and preferences of persons with cognitive im-
pairment (e.g., live in own home, be safe from crime,
do things for self, feel useful, be part of family cele-
brations) and the caregivers’ perceptions of these val-
ues. Understanding the importance of the care re-
ceiver’s values and preferences that are more salient
to day-to-day caregiving will be particularly useful
for researchers and practitioners.
of caregiving and related stress. In fact, the results
from this study are currently being used to add di-
mensions of congruence to a more theoretically
driven study of family decision making (Whitlatch,
2001).
A final limitation of this study was its relatively
small, nonrandom sample and its cross-sectional de-
sign. It is important to recall that the study sample
represented a group of predominately female caregiv-
ers, composed mainly of wives caring for their hus-
bands, and daughters or daughters-in-law caring for
their mothers or mothers-in-law with dementia. The
caregivers and care receivers in our sample were
highly educated, White, and in their early 60s or mid
70s, respectively, with moderate incomes. This sam-
ple, which is not unlike many in the caregiving litera-
ture, may not be representative of caregiver–care re-
ceiver dyads who do not seek or use formal services.
This group, however, does reflect other caregiving
samples (Aneshensel, Pearlin, Mullan, Zarit, & Whit-
latch, 1995; Feinberg & Whitlatch, 1996).
Despite these limitations, this study has identified
directions for the methodology, sample, and content
of future research on consumer direction and deci-
sion making. The next step for researchers is to ex-
amine the stability over time of the measures em-
ployed in this study, and to explore the longer term
effects of decision making in everyday care for per-
sons with cognitive impairment and their family care-
givers (e.g., well-being and service use).
This study provides important preliminary evi-
dence that persons with early to moderate cognitive
impairment are able to articulate certain preferences
and choices for themselves, and to be accurate and
reliable in their responses. Including the perspective
of the person with cognitive impairment—in both re-
search and practice—is essential to empower this
population, enhance their autonomy, and improve
their quality of life.
References
Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlatch,
C. J. (1995). Profiles in caregiving: The unexpected career. New York:
Academic Press.
Ashford, J. W., Kumar, U., Barringer, M., Becker, M., Bice, J., Ryan, N.,
& Vicari, S. (1992). Assessing Alzheimer’s severity with a global clini-
cal scale. International Psychogeriatrics, 4, 55–74.
Brechling, B. G., & Schneider, C. A. (1993). Preserving autonomy in early
stage dementia. Journal of Gerontological Social Work, 20, 17–33.
Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualiza-
tion and measurement of quality of life in dementia: The dementia
quality of life instrument. The Gerontologist, 39, 25–35.
Because of the exploratory nature of this research
we did not use a theoretical model. Instead we relied
on descriptive statistics and analyses for reliability
and accuracy (e.g., Kappa statistics). Given our pre-
liminary yet encouraging findings that persons with
mild to moderate cognitive impairment are reliable
and accurate respondents, we can move toward de-
velopment of a theoretical framework and use more
sophisticated analytic approaches that include the
experience of people with cognitive impairment and
their family caregiver. Caregiving research, in partic-
ular, lags in its efforts to incorporate the perspective
of the person with cognitive impairment into theories
Cicerelli, V. G. (1992). Family caregiving: Autonomous and paternalistic
decision making. Newbury Park, CA: Sage Library of Social Research.
Cohen, D. (1991). The subjective experience of Alzheimer’s disease. The
anatomy of an illness as perceived by patients and families. American
Journal of Alzheimer’s Care and Related Disorders and Research, 6,
6–11.
Cohen, D., & Eisdorfer, C. (1986). The loss of self. New York: Norton.
Coriell, M., & Cohen, S. (1995). Concordance in the face of a stressful life
event: When do members of a dyad agree that one person supported
the other? Journal of Personality & Social Psychology, 69, 289–299.
Cotrell, V., & Schulz, R. (1993). The perspective of patients with Alzhei-
mer’s disease: A neglected dimension of dementia research. The
Gerontologist, 33, 205–211.
Downs, M. (1997). Progress report: The emergence of the person in de-
mentia research. Aging and Society, 17, 597–604.
Feinberg, L. F., & Whitlatch, C. J. (1996). Family caregivers and con-
Vol. 41, No. 3, 2001
381

sumer choice: Options for in-home respite care, Final Report. San
Francisco: Family Caregiver Alliance.
care of people with Alzheimer’s disease: A clinical summary. Journal
of the American Geriatrics Society, 43, 1423–1429.
Pratt, C. C., Jones, L. L., Shin, H., & Walter, A. J. (1989). Autonomy and
decision making between single older women and their caregiving
daughters. The Gerontologist, 29, 792–797.
Rabins, P. V., & Mace, N. L. (1985). Some ethical issues in dementia care.
Clinical Gerontologist, 5, 503–512.
Roberto, K. A. (1999). Making critical health care decisions for older
adults: Consensus among family members. Family Relations, 48, 167–
175.
Sabatino, C. P. (1996). Competency: Redefining our legal fictions. In M.
Smyer, K. W. Schaie, & M. B. Kapp (Eds.), Older adult’s decision-
making and the law (pp. 1–28). New York: Springer.
Sansone, P., Schmitt, R. L., & Nichols, J. N. (1996). The right to choose:
Capacity study of demented residents in nursing homes. New York:
Francis Schervier Home and Hospital.
Stewart, A., Sherbourne, C., & Brod, M. (1996). Measuring health-related
quality of life in older and demented populations. In B. Spilker (Ed.).
Quality of life and pharmaeconomics in clinical trials (2nd ed., pp.
819–829). Philadelphia: Lippincott-Raven.
Wetle, T. (1995). Ethical issues and value conflicts facing case managers of
frail elderly people living at home. In L. B. McCullough & N. L. Wilson
(Eds.), Long-term care decisions: Ethical and conceptual dimensions
(pp. 63–86). Baltimore: The Johns Hopkins University Press.
Wetle, T., Levkoff, S., Cwikel, J., & Rosen, A. (1988). Nursing home resi-
dent participation in medical decisions: Perceptions and preferences.
The Gerontologist, 28 (Suppl.), 32–38.
Folstein, M. F., Folstein, S., & McHugh, P. R. (1975). Mini-mental state:
A practical method for grading the cognitive state of patients for the
clinician. Journal of Psychiatric Research, 12, 189–198.
Gerety, M. B., Chiodo, L. K., Kanten, D. N., Tuley, M. R., & Cornell,
J. E. (1993). Medical treatment preferences of nursing home residents:
Relationship to function and concordance with surrogate decision
makers. Journal of the American Geriatrics Society, 41, 953–960.
High, D. M., & Rowles, G. D. (1995). Nursing home residents, families,
and decision making: Toward an understanding of progressive surro-
gacy. Journal of Aging Studies, 9, 101–117.
Horowitz, A. (1998, November). The extent of congruence between disabled
elders and their family members. Poster session presented at the Annual
Meeting of The Gerontological Society of America, Philadelphia.
Jennings, B. (1999). A life greater than the sum of its sensations: Ethics,
dementia and the quality of life. Journal of Mental Health and Aging,
5, 95–106.
Kapp, M. B. (1990). Evaluating decision making capacity in the elderly: A
review of the literature. Journal of Elder Abuse & Neglect, 2, 15–24.
Kapp, M. B., & Mossman, D. (1996). Measuring decisional capacity:
Cautions on the construction of a capacimeter. Psychology, Public
Health and the Law, 2, 73–95.
Kitwood, T. (1997). The experience of dementia. Aging and Mental
Health, I, 13–22.
Kitwood, T., & Benson, S. (1995). The new culture of dementia care. Lon-
don: Hawker Publications.
Logsdon, R. G., & Albert, S. M. (1999). Assessing quality of life in Alzhei-
mer’s disease: Conceptual and methodological issues. Journal of
Mental Health and Aging, 5, 3–6.
Logsdon, R., & Teri, L. (1996, November). Assessment of quality of life,
pleasant events, and depression in Alzheimer’s disease outpatients. Pa-
per presented at the Annual Meeting of The Gerontological Society of
America, Washington, DC.
McHorney, C. A. (1996). Measuring and monitoring general health status
in elderly persons: Practical and methodological issues using the SF-36
Health Survey. The Gerontologist, 36, 571–583.
Whitlatch, C. J. (2001). Including the person with dementia in family care-
giving research. Aging and Mental Health, 5(Suppl. 1), 522–524.
Willis, S. L., Allen-Burge, R., Dolan, M. A., Bertrand, R. A., Yesavage, J.,
& Taylor, J. L. (1998). Everyday problem solving among individuals
with Alzheimer’s disease. The Gerontologist, 38, 569–577.
Woods, B. (1999). The person in dementia care. Generations, 23(3), 35–39.
Yale, R. (1999). Support groups and other services for individuals with
early-stage Alzheimer’s disease. Generations, 23(3), 57–61.
Young, R. (1994). Elders, families and illness. Journal of Aging Studies, 8,
1–15.
Parmelee, P. A., Lawton, M. P., & Katz, I. R. (1989). Psychometric prop-
erties of the Geriatric Depression Scale among the institutionalized
aged. Psychological Assessment, 1, 331–338.
Pett, M. (1997). Non parametric statistics for health care research. Thou-
sand Oaks, CA: Sage.
Received July 5, 2000
Accepted January 15, 2001
Post, S. G., & Whitehouse, P. J. (1995). Fairhill guidelines on ethics of the
Decision Editor: Laurence G. Branch, PhD
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