Improving Quality of Life for Persons With
Alzheimer’s Disease and Their Family Caregivers:
Brief Occupational Therapy Intervention
Nancy Robert Dooley, PhD, OTR, is Assistant Professor,
New England Institute of Technology, 2500 Post Road,
Warwick, Rhode Island 02886; ndooley@neit.edu
Jim Hinojosa, PhD, OT, FAOTA, is Professor, New York
University, New York, New York.
The American Journal of Occupational Therapy
Nancy Robert Dooley,
Jim Hinojosa
OBJECTIVE. This study examined the extent to which adherence to occupational therapy recommendations
would increase the quality of life of persons with Alzheimer’s disease living in the community and decrease the
burden felt by family members caring for them.
METHOD. Using a pretest–posttest control group design, the Assessment of Instrumental Function (AIF) was
administered to two groups of persons with Alzheimer’s disease in their own homes (n = 40). Caregivers com-
pleted measures of their feelings of burden and the quality of life, including level of function of the persons with
Alzheimer’s disease.
RESULTS. A significant (MANCOVA) main effect was obtained for caregiver burden and three components
of quality of life, positive affect, activity frequency and self-care status, by the treatment group, F(4, 31) = 7.34,
p < .001.
CONCLUSIONS. Individualized occupational therapy intervention based on the person–environment fit
model appears effective for both caregivers and clients. This is especially important in light of a recent direc-
tive for more favorable reimbursement for occupational therapy services for persons with dementia.
Dooley, N. R., & Hinojosa, J. (2004). Improving quality of life for persons with Alzheimer’s disease and their family care-
givers: Brief occupational therapy intervention. American Journal of Occupational Therapy, 58, 561–569.
amily and friends care for the majority of persons with Alzheimer’s disease in
F their homes (Corcoran & Gitlin, 1992; Haley, 1997). This care has significant
social and financial costs (Gutterman, Markowitz, Lewis, & Fillit, 1999; Haley;
Leon, Cheng, & Neumann, 1998; Small et al., 1997). A number of researchers
have reported that occupational therapy is effective for persons who have
Alzheimer’s disease (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001; Josephsson,
1996; Josephsson, Backman, Nygard, & Borell, 2000). Occupational therapy
often consists of caregiver education and environmental adaptation to maximize
functional independence, safety, and well-being of the person with Alzheimer’s dis-
ease (American Occupational Therapy Association [AOTA], 1994; Atler & St.
Michel, 1996; Corcoran & Gitlin, 1991; Josephsson, 1996). This study examined
the extent to which adherence to occupational therapy recommendations derived
from individualized assessment would: (1) decrease the burden felt by persons car-
ing for someone with Alzheimer’s disease living in the community, and (2) increase
the quality of life of the persons with Alzheimer’s disease.
Family caregivers of persons with Alzheimer’s disease often lack formal train-
ing for the caregiving role and are not aware of the various environmental adapta-
tions and caregiving strategies that may be helpful (Corcoran, 1994; Corcoran &
Gitlin, 1992; Haley, 1997). The repetitive questioning and behavioral problems of
the person with Alzheimer’s disease often trouble caregivers. Further, caregivers
may be devastated by the emotional hardship of seeing a loved one decline
(Burgener, Bakas, Murray, Dunahee, & Tossey, 1998; Haley; Small et al., 1997).
Diminishing abilities to participate in daily occupations produce concerns over
561
safety of the individual and stressful time constraints for
family members (Haley; Hope, Keene, Gedling, Fairburn,
& Jacoby, 1998; Josephsson et al., 2000). Family caregivers
of persons with dementia experience high rates of depres-
sion and physical illness that may linger for several years
after the loved one has been placed in a nursing home or has
died (Dunkin & Anderson-Hanley, 1998; Haley, 1997;
Small et al., 1997).
Quality of life of caregivers of persons with Alzheimer’s
disease, or its related inverse, caregiver burden, is closely
tied to quality of life for care recipients (Dunkin &
Anderson-Hanley, 1998; Stuckey, Neundorfer, & Smyth,
1996; Walker, Salek, & Bayer, 1998). Quality of life of per-
sons who have Alzheimer’s disease is indicated by their abil-
ity to participate in and enjoy daily activities, including self-
care and leisure, and in expressions of positive affect, such
as pleasure and interest (Albert et al., 1996; Lawton, 1997).
Occupational therapy intervention derived from
assessments that determine useable skills and supports are
proposed to help a person with Alzheimer’s disease perform
maximally in activities of daily living (ADL) and should
logically produce a corresponding increase in the quality of
life of the individual (Baum, 1995; Brod, Stewart, &
Sands, 2000; Corcoran, 1994). The assumption is that
when the abilities of persons with Alzheimer’s disease fit
well with the demands and opportunities in their environ-
ments, they experience better quality of life and fewer
behavioral upsets (Baum, 1995; Lawton & Nahemow,
1973). This hypothesis was supported by Rogers et al.
(1999) who used a detailed functional assessment to devel-
op individualized intervention programs in self-care tasks
for persons with Alzheimer’s disease living in nursing
homes. Better quality of life was reflected in fewer episodes
of verbal and physical agitation during ADL sessions after
therapists carried out intervention programs to help severe-
ly cognitively impaired participants utilize and maximize
their ADL skills (Rogers et al.).
The Assessment of Instrumental Function (AIF) is an
assessment tool that assists occupational therapists in plan-
ning appropriate interventions by describing the current
skills and supports of the person with Alzheimer’s disease
(Brinson & Marran, 1997). If the suggested occupational
therapy interventions are successfully implemented, result-
ing in good person–environment fit, the person who has
Alzheimer’s disease should experience a greater quality of
life (Allen, 1985; Lawton & Nahemow, 1973).
Behavioral and functional improvements in persons
with Alzheimer’s disease have been correlated with lower
stress on the part of caregivers (Baum, 1995; Burgener et
al., 1998), which Dunkin and Anderson-Hanley (1998)
have associated with delayed placement of persons with
562
dementia in institutional settings. Hasselkus (1998) used a
qualitative approach to describe the ways in which guided
engagement in daily living tasks produced well-being in
adult day program clients and considerable feelings of satis-
faction in caregivers. She concluded that occupation pro-
vided a means for staff members to become connected with
the persons with dementia. Corcoran (1994) documented
similar experiences of spousal caregivers of persons with
Alzheimer’s disease. The spouses reported that they used
engagement in daily living tasks, environmental adapta-
tions, and the maintenance of contact with social groups as
means of enhancing the well-being of the individuals with
dementia. The spouses put considerable energy into these
efforts and drew satisfaction from these elements of care-
giving (Corcoran).
Teri, Logsdon, Uomoto, and McCurry (1997) also
reported positive results with programs that encouraged
caregivers to use daily occupation with their family mem-
bers who had Alzheimer’s disease. Their program encourag-
ing caregivers to plan and provide pleasurable activities. The
activities, which the authors called pleasant events, consist-
ed of passive and active leisure pursuits and basic and instru-
mental ADL (Teri & Logsdon, 1991). Burgener and her
colleagues (1998) further supported the effectiveness of
changing caregiving strategies in order to improve self-care
performance in persons with dementia.
Research Questions
The following research questions were addressed in this
investigation:
(1) To what extent will following occupational therapy
recommendations, which are derived from Assessment of
Instrumental Function (AIF) results, produce improvement
in the quality of life of persons with Alzheimer’s disease liv-
ing in the community?
(2) To what extent will following these occupational
therapy recommendations produce a decrease in the level of
burden felt by caregivers of persons with Alzheimer’s disease
living in the community?
Method
Using a pretest–posttest control group design, the AIF was
administered to two groups of persons with Alzheimer’s dis-
ease in their own homes. Caregiver burden and quality of
life for participants with Alzheimer’s disease were used to
determine the effects of the occupational therapy recom-
mendations derived from the AIF on the control and
treatment groups.
September/October 2004, Volume 58, Number 5
Participants
Participants were 40 men and women diagnosed with pos-
sible or probable Alzheimer’s disease who were recruited
from among the clients of a university-affiliated outpatient
memory disorders clinic and their 40 caregivers.
Participants lived in their homes or apartments and had a
caregiver who lived with them, or spent several hours per
week with them, who was also willing to participate in the
investigation. Participants with Alzheimer’s disease had not
been assessed with the AIF as part of the services of the
memory disorders clinic in the preceding year and were not
receiving other occupational therapy services. Eligible par-
ticipants with Alzheimer’s disease were rated as being in
mild to moderate stages of impairment as determined by
Mini-Mental Status Exam (MMSE) scores (Folstein,
Folstein, & McHugh, 1975) of 10 or more on a 30-point
scale (Knapp et al., 1994). Many participants were using
Aricept(r), a medication meant to enhance cognition, but
none had begun using it within the previous 6 weeks.
Persons with current symptoms of major depression were
excluded from the study. All participants and caregivers
gave informed consent through procedures approved by the
relevant university and hospital institutional review boards.
Instruments
The AIF (Brinson & Marran, 1997) is made up of perfor-
mance-based test items assessing safety, medication admin-
istration, money management, and meal planning and
preparation. Test items are completed with standardized
props and require performance in common instrumental
ADL tasks, such as managing doses of multiple medica-
tions, or cooking a light meal. Directed questioning of the
respondent and a caregiver helps to individualize the assess-
ment by detailing the client’s usual roles, task demands, and
supports. Scoring of the AIF uses a scale in which 2 = inde-
pendent performance, 1 = successful performance only
when assisted or prompted, and 0 = inability to complete
the test item accurately even with assistance (Brinson &
Marran).
Evidence exists for content validity and criterion-relat-
ed validity when using the AIF with older adults. AIF scores
were significantly associated with ratings on neuropsycho-
logical tests of executive function, depression, and visuospa-
tial skills (Cahn-Weiner, Malloy, Boyle, Marran, &
Salloway, 2000). All sections of an earlier version of the AIF
correlated significantly with the Katz Index of Activities of
Daily Living (Nadler, Richardson, Malloy, Brinson, &
Marran, 1993). Brinson (1996) reported high interrater
reliability of the AIF for adults with geropsychiatric disor-
The American Journal of Occupational Therapy
ders with intraclass correlation coefficients (ICC) of .975
for experienced raters. The test–retest reliability coefficients
for each section of the AIF ranged from ICC = .78 to ICC
= .87 (Dooley, 1997).
The Zarit Burden Interview is a 29-item questionnaire
that uses a 5-point scale, with wording ranging from
“never” to “nearly always,” to measure the caregivers’ per-
ceptions of burden associated with various aspects of caring
for family members with Alzheimer’s disease. Higher scores
indicate greater levels of burden (Zarit, Todd, & Zarit,
1986). The instrument measures the stressful emotional
aspects of caregiving and the temporal, social, and interper-
sonal burdens of the caregiver. Validity of the Burden
Interview is supported by findings of significantly lower lev-
els of burden in caregivers who have more support from
family members (Zarit, Reever, & Bach-Peterson, 1980),
and the association of higher perceived burden with lowered
coping ability (Zarit et al., 1986). Reliability of the Burden
Interview has been established and it is commonly used to
measure dementia outcomes for family caregivers (Smyth et
al., 1997).
The Affect and Activity Limitation-Alzheimer’s Disease
Assessment (AAL-AD) (Albert et al., 1996) was created by
modifying two existing scales to create an objective measure
of quality of life for persons with Alzheimer’s disease that is
rated by a caregiver. This assessment includes a rating of the
frequency with which the person with dementia engages in
pleasurable activities and displays positive or negative affect
as evidenced by clearly defined descriptors. Higher scores
indicate higher levels of engagement and enjoyment of
activities. Higher scores on the two affect scales, which are
considered separately, indicate a stronger presence of either
positive or negative affect. The criterion-related validity of
the AAL-AD was supported by significant correlation with
other measures of quality of life in dementia, including
ADL ability and cognitive status. The assessment has good
interrater agreement for family and institutional caregivers
as evidenced by a lack of significant differences between
mean scores on activity frequency and enjoyment given by
caregivers of the same patients who lived in nursing homes
(n = 43). The test–retest reliability of the AAL-AD for per-
sons with moderate to severe dementia in a clinic-based
group was kappa = .92 to .53 for observed affect, and kappa
> .60 for 12 of 15 activity items (n = 130) (Albert et al.).
The Physical Self-Maintenance Scale (PSMS) (Lawton
& Brody, 1969) was used to evaluate the self-care status of
participants with Alzheimer’s disease, as a component of
their quality of life. The PSMS is a caregiver-report measure
that is widely used in clinical and research settings.
Reliability coefficients for the PSMS range from .91 to .96
563
and evidence for validity exists through significant correla-
tion to measures of function and cognition (Lawton &
Brody). Each item is scored on a scale ranging from 0 for
dependence, 1 for need for assistance, and 2 for indepen-
dence. Total scores are calculated with higher scores equal-
ing greater independence in basic self-care.
Procedure
At the beginning of the study, the principal investigator, a
registered occupational therapist, administered the AIF to
the person with Alzheimer’s disease and the AAL-AD,
Burden Interview, and PSMS to the caregiver during a
home visit. The investigator then used the AIF results to
write a report summarizing the assessment findings and
providing occupational therapy recommendations to the
caregiver to help maximize the client’s quality of life and
ability to function. Development of strategies was guided
by the work of Gitlin and Corcoran (1996), elaborating on
the person–environment fit framework described by
Lawton and Nahemow (1973) (Corcoran & Gitlin, 1991).
Researchers avoided experimenter bias by randomly assign-
ing the participant pairs to the control or treatment group
after each report was written.
Occupational therapy recommendations for persons in
the treatment group were reviewed with the person with
Alzheimer’s disease and caregiver during another home visit,
lasting about 30 minutes. The written report including rec-
ommendations was left with the caregiver at that time.
Participants with Alzheimer’s disease varied in their abilities
to take part in the problem solving process due to their
symptoms. Detailed notes were kept regarding the reactions
of the participant with Alzheimer’s disease and caregiver to
the report. Potential problems with implementing the rec-
ommendations were discussed, as well as any new sugges-
tions that were formulated through input from the partici-
pant pair.
Caregiving strategies that were recommended to par-
ticipant pairs in the treatment group generally fell into
three categories: environmental modifications, caregiver
approaches, and community-based assistance. All partici-
pants received a combination of all three types of recom-
mendations.
The environmental modifications category included
recommendations of any change or addition to the physical
surroundings of the person with Alzheimer’s disease.
Commonly recommended environmental modifications
were visual cues such as clearly posting emergency tele-
phone numbers or labeling drawers and cabinets where
commonly used items are kept. Some environmental mod-
ifications involved the use of adaptive devices such as a pill
reminder boxes that are easy for the person with Alzheimer’s
564
disease to use. Other environmental modifications were
highly individualized, such as placing a bell and a baby
monitor at the apartment door so that a man with
Alzheimer’s disease would not wander into his building’s
hallways while his wife was asleep. Items needed for envi-
ronmental modification were not provided as part of this
study, but specific purchasing information was provided
when requested.
Strategies in the category of caregiver approaches were
ways in which the caregiver could interact with the person
with Alzheimer’s disease to create more opportunities for
success in daily living tasks. Caregiver approaches included
suggestions such as providing a structured daily routine to
the person with Alzheimer’s disease, or involving the person
with Alzheimer’s disease in household chores like preparing
meals, putting away dishes, or making beds. This category
also included suggested methods for cueing the person with
Alzheimer’s disease to perform at his or her highest level.
Examples of cueing were to break down tasks and give
directions one step at a time, to suggest activities to the per-
son with Alzheimer’s disease when he or she was unoccu-
pied, or to gently remind the person to use visual cues or
adaptive equipment. There were no structured opportuni-
ties to practice the caregiver approaches.
Recommendations for community-based assistance
were referrals to resources available in the local area. The
most common recommendations for community-based
assistance were for caregivers to attend support groups
offered by the Alzheimer’s Association. Other referrals were
for services in the home such as home-delivered meals for
persons who were home alone during the day and forget-
ting to eat lunch. Other recommendations included home-
maker services, occupational therapy driving evaluations,
senior centers, and adult day programs. Finally, this cate-
gory included information about financial assistance pro-
grams for which some participants were eligible, such as
pharmaceutical assistance, and reduced rates on home-
maker services.
One month after completing the AIF, caregivers were
contacted by telephone to complete a second Burden
Interview, AAL-AD, and PSMS. Due to scheduling prob-
lems and the demands of caring for a person with
Alzheimer’s disease, completion of the follow-up assess-
ments was delayed with some caregivers. Caregivers in the
treatment group rated the frequency with which they uti-
lized strategies that the occupational therapist recommend-
ed on an ordinal scale with 3 choices of “never, sometimes,
or often.”
Although the occupational therapy recommendations
included more than five strategies in some cases, they were
listed in order of importance, by the principal investigator’s
September/October 2004, Volume 58, Number 5
judgment, and only the top five were recorded. The
researchers recorded comments from the caregivers about
how the strategies worked or did not work. The caregivers
were also asked whether any changes had occurred with the
client or family since the initial assessment and these were
recorded. Examples of changes included a client developing
a new medical condition, a client moving to a new apart-
ment, or the family having taken a vacation. Caregivers in
the control group received the written report of the occupa-
tional therapy recommendations in the mail after complet-
ing the follow-up Burden Interview, AAL-AD, and PSMS.
Data Analysis
Analysis of results was performed using SPSS Graduate
Pack 10.0 for Windows with an alpha level of .05 for all
analyses. Cases with missing data, two cases for number of
comorbid conditions and two for use of Aricept, were elim-
inated from analyses that involved the missing variables.
Analysis of all dependent variables using skewness and kur-
tosis statistics and histograms indicated that none departed
significantly from normal distribution curves.
No significant differences were found between treat-
ment and control groups on client age, MMSE score, num-
ber of comorbid conditions, and initial self-care status
(PSMS) using two-tailed t tests for independent samples.
The treatment and control groups were equivalent for care-
giver gender, with each group having 16 female caregivers.
Neither client gender nor use of Aricept was significantly
related to group membership as determined by cross-tabu-
lations and Pearson’s chi-square.
Multiple analysis of covariance (MANCOVA) was used
to examine the effects of the occupational therapy interven-
tion on two outcome measures: caregiver burden and qual-
ity of life of participants with Alzheimer’s disease.
Functional status, the first component of quality of life for
the participants with Alzheimer’s disease, was indicated by
PSMS scores. Administration of the AAL-AD produced
two observed affect variables (negative affect and positive
affect) and three activity variables (activity opportunity,
activity frequency, and activity enjoyment). Because the
magnitude and direction of correlations among the poten-
tial dependent variables can affect the MANCOVA results,
Pearson product–moment correlation coefficients were cal-
culated among these five variables to determine which ones
should be retained (Tabachnick & Fidell, 2001). The mag-
nitude and significance of these correlations are presented in
Table 1. The data were analyzed with the goal of retaining
one activity variable and one affect variable so that both
components of quality of life measured by the AAL-AD
would be represented along with caregiver burden and self-
care status. Activity frequency and enjoyment were so highly
The American Journal of Occupational Therapy
Table 1. Bivariate Correlations Between Dependent Variables
Activity Activity Activity Positive Negative
Opportunity Frequency Enjoyment Affect Affect
Caregiver Burden .05 –.16 –.33* –.44** .49**
Activity Opportunity .63** .54** .22 –.09
Activity Frequency .84** .65** –.09
Activity Enjoyment .71** –.45**
Positive Affect .41**
n = 40, p < .05, * two-tailed ** p < .01, two-tailed
correlated (r = .84, p < .001) that inclusion of both variables
would be redundant (Tabachnick & Fidell). Activity fre-
quency was a more objective measure so it was retained for
the MANCOVA.
Tabachnick and Fidell (2001) point out that some sig-
nificant correlation among dependent variables helps to
increase the power of MANCOVA to detect treatment
effects. Examination of the correlation matrix revealed that
activity frequency and positive affect (r = .65, p < .001)
were the most logical of the dependent variables to enter
the MANCOVA equation together. Negative affect was
not significantly correlated with activity frequency or
opportunity.
Thus, for the MANCOVA, treatment was the inde-
pendent variable. Posttest scores on self-care status, activity
frequency, positive affect, and caregiver burden were the
dependent variables and their pretest counterparts were the
covariates.
Results
The following characteristics apply to the 16 men and 24
women (n = 40) diagnosed with Alzheimer’s disease who
participated in this study. They had a mean age of 77.08
(SD = 8.86) years and high school was their median level of
education (47.5%). The majority of participants were mar-
ried (67.5%), with the next largest group being widowed
(22.5%). Their MMSE scores ranged from 11 to 29 out of
30 and the majority of participants (60.5%) were taking
Aricept to enhance cognition. In addition to Alzheimer’s
disease, they had a median of three comorbid conditions,
with a range of 1 to 8.
Caregiver participants were mostly women (80%), and
70% of them lived with the person who had Alzheimer’s
disease. The relationships of caregivers to participants were:
spouse (50%), adult child (42.5%), and one each of sibling,
daughter-in-law, and significant other. Although people of
all racial and ethnic backgrounds were recruited, all the par-
ticipating clients and caregivers were Caucasian.
The time period between initial and follow-up assess-
ments was planned to be one month. Due to difficulties in
565
Table 2. Multiple Analysis of Covariance of Caregiver Burden and
Quality of Life Variables by Treatment Group: Multivariate Tests
Hypothesis Error
Effect Fa df df Sig. squared power
Intercept 1.68 4 31 .179
Self-care 15.44 4 31 < .001
Caregiver Burden 17.21 4 31 < .001
Positive Affectb 1.59 4 31 .201
Activity Frequency 11.78 4 31 < .001
Group 7.34 4 31 < .001
a
All F tests calculated using Pillai’s Trace (Tabachnick & Fidell, 2001).
b
Pretest values serve as covariates for positive affect, activity opportunity, and
activity frequency.
N = 40
scheduling meetings and telephone calls with many care-
givers, however, the mean follow-up time was actually 2.33
months (SD = 1.18), with a range of 1–6 months.
The percentage of strategies followed by caregivers in
the treatment group was determined by calculating the
number of strategies that each caregiver followed, either
sometimes or often, divided by the number of strategies
that were recommended to each caregiver. Caregivers in the
treatment group followed a mean of 65.1% (SD = 19.81) of
the five most important recommended strategies.
Two assumptions for using MANCOVA, equality of
covariance matrices of the dependent variables across
groups and equality of error variance, were tested and satis-
fied. The MANCOVA results demonstrated that there was
a significant difference in the levels of burden felt by care-
givers and of quality of life for participants with Alzheimer’s
disease associated with the treatment group, after adjusting
for differences in pretest scores on the dependent variables.
A significant MANCOVA main effect was obtained for
caregiver burden, positive affect, activity frequency, and
self-care status by treatment group, F (4, 31) = 7.34, p <
.001. The variance in the main effect attributable to the
independent variable (SPSS, 1999), eta squared (η2), was
.49. Sufficient power to detect a Type II error (observed
power = .99) was observed (Cohen, 1992) (Table 2).
Univariate tests of between-subjects effects were used to
assess the contribution of each dependent variable to the
overall effect of the four variable MANCOVA. At this level,
caregiver burden (F (1, 34) = 15.15, p < .001), positive
affect (F (1, 34) = 6.54, p = .015), and self-care status (F (1,
34) = 4.92, p = .03) were significant, but activity frequency
(F (1, 34) = 0.31, p = .58) was not. Pairwise comparisons of
the estimated marginal means for each of the three signifi-
cant dependent variables were used to detect the direction
of change that was associated with the treatment group.
This analysis confirmed that the changes noted after the
occupational therapy intervention were as expected. The
persons with Alzheimer’s disease in the treatment group had
566
higher levels of positive affect and independence in self-care
at the posttest and their caregivers had significantly lower
Eta Observed
levels of burden at the posttest.
.177 .456
.666 1.00
.690 1.00
Discussion
.171 .433 In the present study, adherence to occupational therapy
.603 1.00 recommendations derived from individualized assessment
.486 .990 produced significant improvements in quality of life for
persons with Alzheimer’s disease living in the community
and significant diminishment of burden felt by family
members caring for them. Participants whose caregivers
received and followed occupational therapy recommenda-
tions derived from the AIF had significantly higher scores
on quality of life variables at the posttest than those who did
not receive the recommendations. Caregivers had signifi-
cantly lower feelings of burden than those who did not
receive the recommendations.
The MANCOVA results mean that difference in
treatment group was most influential on the combination
of caregiver burden, positive affect, activity frequency, and
self-care status when pretest scores were held constant.
The univariate analyses demonstrated that caregiver bur-
den made the largest contribution to the variance in the
main effect of the treatment. Demonstration of positive
affect and improvement in self-care status were the specif-
ic components of quality of life that drove the overall
improvement for participants diagnosed with Alzheimer’s
disease.
The present study is one of the first to document
improvements in quality of life of persons with Alzheimer’s
disease and lower caregiver burden after a brief occupation-
al therapy intervention (Gitlin et al., 2001). The present
study used a combination of strategies that have evidence
for effectiveness with persons who have Alzheimer’s disease
and their caregivers including encouraging participation in
familiar daily activities (Josephsson et al., 1993; Teri et al.,
1997) and modification of the physical and social home
environment (Gitlin et al., 2001; Robinson, Adkisson, &
Weinrich, 2001).
Gitlin and her colleagues (2001) found that recipients
of an occupational therapy intervention aimed at the home
environment maintained their instrumental ADL abilities
better than members of the control group over a 3-month
study period. Certain subgroups of caregivers in the treat-
ment group also experienced fewer caregiving upsets. While
the present study did not duplicate the home environmen-
tal intervention described by Gitlin, Corcoran, Winter,
Boyce, & Marcus (1999), there is considerable overlap in
the approaches, as they are both based on theoretical infor-
mation describing the fit between a person’s competence
September/October 2004, Volume 58, Number 5
and the demands of his or her environment (Lawton &
Nahemow, 1973).
Josephsson et al. (2000) emphasized the need to use a
flexible and collaborative approach when helping caregivers
solve the everyday functional problems of individuals with
Alzheimer’s disease. It is essential to respect what is valued,
meaningful, and habitual to the family and to provide
assessment and intervention in the home environment
(Sifton, 2000; Toth-Cohen, 2000). Many recommenda-
tions were modified during the second visit to families in
the treatment group, to help fit the preferences and usual
lifestyles of the families. It is not known whether addition-
al sessions would have produced greater improvements in
quality of life or more frequent use of suggested strategies by
caregivers.
Caregivers in the present study demonstrated a high
degree of receptivity to the strategies that were recommend-
ed to them. The fact that two thirds of the strategies were
followed indicates that the caregivers tended to see a signif-
icant need for help in their daily lives with a person who has
dementia. All caregivers in the treatment group followed at
least one strategy at least part of the time.
Gitlin and her colleagues (1999; 2001) have investigat-
ed factors related to caregiver adherence to occupational
therapy strategies. Depression in caregivers, which was not
measured in the present study, may be a factor that moder-
ates treatment by influencing caregiver adherence to recom-
mended strategies (Gitlin et al., 1999). Future research
should include screening for depression in caregivers and
determination of the influence of caregiver mental health
on adherence to recommended strategies.
Interventions targeting persons with Alzheimer’s dis-
ease living in the community have tended to focus on care-
giver outcomes with varying results (Dunkin & Anderson-
Hanley, 1998; Gitlin et al., 1999). Previous studies have
been more successful at improving knowledge levels of care-
givers, than at impacting their feelings of burden associated
with caregiving or at changing the behavior or functioning
of the persons with dementia (Bower, McCullough, & Pille,
2002; Burgener et al., 1998; Sorenson, Pinquart, &
Duberstein, 2002). The effects of interventions for care-
givers of persons with dementia are also generally smaller
than for those caring for older persons with other problems
(Sorenson et al.). The magnitude of the effects on caregivers
and persons with dementia in the present study compare
favorably with the mean effects of studies included in the
meta-analysis of 78 caregiver intervention studies done by
Sorenson et al.
This study was the first to use the AAL-AD as an out-
come measure for a treatment aimed at persons with
Alzheimer’s disease and their caregivers. Measurement of
The American Journal of Occupational Therapy
quality of life of persons who have Alzheimer’s disease is
challenging, and instruments for this purpose have been
developed only in the past few years (Lawton, 1997; Rabins
& Kasper, 1997). When used with a measure of functional
status, such as the PSMS, the AAL-AD appears to be a use-
ful tool for measuring some of the more subjective aspects
of quality of life for persons with dementia (Albert et al.,
1996; Lawton, 1997). Tools such as the AAL-AD should
prove very valuable as occupational therapists attempt to
further quantify their contributions to the care of persons
with dementia.
Suggestions for Future Research
In this study significant changes were seen in positive affect
in the person with Alzheimer’s disease and decreased care-
giver burden with a brief occupational therapy intervention
consisting of one assessment visit and one follow-up session.
By contrast, the intervention described by Gitlin et al.
(2001) included five 90-minute occupational therapy ses-
sions. Further study is needed to determine the optimal
period of occupational therapy intervention for persons
with Alzheimer’s disease and their caregivers. Another sug-
gestion for future research is to determine whether caregiv-
ing strategies derived from the AIF have similar effects over
a longer period of time than the average of 2.33 months in
this study. Also, the use of the AIF could be combined with
other interventions to determine if a greater treatment effect
can be obtained. For example, provision of financial and
practical assistance to help make environmental modifica-
tions or apply for community-based assistance may improve
adherence to strategies and produce even stronger positive
outcomes.
Conclusions
The unrelenting progression of Alzheimer’s disease robs
people of their abilities to function in daily tasks and to
enjoy life through time spent on meaningful activities. This
study appears to be the first to simultaneously use quality of
life and caregiver burden as measures of the outcome of
occupational therapy for persons with Alzheimer’s disease.
The results of this study support the unique value of occu-
pational therapy with progressive conditions such as
Alzheimer’s disease, when the prevention of unnecessary
decline and maintenance of quality of life for individuals
and caregivers are essential. These promising results present
an opportunity for occupational therapists because the
Centers for Medicare and Medicaid Services has recently
directed that coverage for occupational therapy services for
persons who have dementia cannot be denied solely on the
basis of diagnosis (2001).
567
 Individualized occupational therapy intervention based
on the person–environment fit model using a valid and reli-
able assessment, such as the AIF, appears effective for both
caregivers and clients. Following occupational therapy rec-
ommendations produced significant improvements in qual-
ity of life for persons with Alzheimer’s disease living in the
community and significant diminishment of burden felt by
family members caring for them.▲
Acknowledgments
This article is based on research conducted by the first
author in partial fulfillment of the requirements for the
Doctorate of Philosophy in Occupational Therapy in The
Steinhardt School of Education at New York University.
The authors thank Mary V. Donohue, PhD; and Jeff
Backstrand, PhD, for support and assistance. We also wish
to express gratitude to Paul Malloy, PhD; Stephen Salloway,
MD; and Susan Hansen, COTA.
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