“Improving Quality of Life for Persons with Alzheimer’s Disease and Their Family Caregivers: Brief Occupational Therapy Intervention"

The American Journal of Occupational Therapy 561

Improving Quality of Life for Persons With Alzheimer’s Disease and Their Family Caregivers: Brief Occupational Therapy Intervention

Nancy Robert Dooley,Jim Hinojosa

Family and friends care for the majority of persons with Alzheimer’s disease intheir 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 researchershave reported that occupational therapy is effective for persons who haveAlzheimer’s disease (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001; Josephsson,1996; Josephsson, Backman, Nygard, & Borell, 2000). Occupational therapyoften consists of caregiver education and environmental adaptation to maximizefunctional 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 examinedthe extent to which adherence to occupational therapy recommendations derivedfrom individualized assessment would: (1) decrease the burden felt by persons car-ing for someone with Alzheimer’s disease living in the community, and (2) increasethe 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 ofthe person with Alzheimer’s disease often trouble caregivers. Further, caregiversmay 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

Nancy Robert Dooley, PhD, OTR, is Assistant Professor,New England Institute of Technology, 2500 Post Road,Warwick, Rhode Island 02886; [email protected]

Jim Hinojosa, PhD, OT, FAOTA, is Professor, New YorkUniversity, New York, New York.

OBJECTIVE. This study examined the extent to which adherence to occupational therapy recommendationswould increase the quality of life of persons with Alzheimer’s disease living in the community and decrease theburden felt by family members caring for them.

METHOD. Using a pretest–posttest control group design, the Assessment of Instrumental Function (AIF) wasadministered 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 withAlzheimer’s disease.

RESULTS. A significant (MANCOVA) main effect was obtained for caregiver burden and three componentsof 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 fitmodel 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.

safety of the individual and stressful time constraints forfamily members (Haley; Hope, Keene, Gedling, Fairburn,& Jacoby, 1998; Josephsson et al., 2000). Family caregiversof persons with dementia experience high rates of depres-sion and physical illness that may linger for several yearsafter the loved one has been placed in a nursing home or hasdied (Dunkin & Anderson-Hanley, 1998; Haley, 1997;Small et al., 1997).

Quality of life of caregivers of persons with Alzheimer’sdisease, or its related inverse, caregiver burden, is closelytied 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, suchas pleasure and interest (Albert et al., 1996; Lawton, 1997).

Occupational therapy intervention derived fromassessments that determine useable skills and supports areproposed to help a person with Alzheimer’s disease performmaximally in activities of daily living (ADL) and shouldlogically produce a corresponding increase in the quality oflife of the individual (Baum, 1995; Brod, Stewart, &Sands, 2000; Corcoran, 1994). The assumption is thatwhen the abilities of persons with Alzheimer’s disease fitwell with the demands and opportunities in their environ-ments, they experience better quality of life and fewerbehavioral 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 tasksfor persons with Alzheimer’s disease living in nursinghomes. Better quality of life was reflected in fewer episodesof verbal and physical agitation during ADL sessions aftertherapists carried out intervention programs to help severe-ly cognitively impaired participants utilize and maximizetheir ADL skills (Rogers et al.).

The Assessment of Instrumental Function (AIF) is anassessment tool that assists occupational therapists in plan-ning appropriate interventions by describing the currentskills and supports of the person with Alzheimer’s disease(Brinson & Marran, 1997). If the suggested occupationaltherapy interventions are successfully implemented, result-ing in good person–environment fit, the person who hasAlzheimer’s disease should experience a greater quality oflife (Allen, 1985; Lawton & Nahemow, 1973).

Behavioral and functional improvements in personswith Alzheimer’s disease have been correlated with lowerstress on the part of caregivers (Baum, 1995; Burgener etal., 1998), which Dunkin and Anderson-Hanley (1998)have associated with delayed placement of persons with

dementia in institutional settings. Hasselkus (1998) used aqualitative approach to describe the ways in which guidedengagement in daily living tasks produced well-being inadult 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 withthe persons with dementia. Corcoran (1994) documentedsimilar experiences of spousal caregivers of persons withAlzheimer’s disease. The spouses reported that they usedengagement in daily living tasks, environmental adapta-tions, and the maintenance of contact with social groups asmeans of enhancing the well-being of the individuals withdementia. The spouses put considerable energy into theseefforts and drew satisfaction from these elements of care-giving (Corcoran).

Teri, Logsdon, Uomoto, and McCurry (1997) alsoreported positive results with programs that encouragedcaregivers 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. Theactivities, 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 hercolleagues (1998) further supported the effectiveness ofchanging caregiving strategies in order to improve self-careperformance in persons with dementia.

Research Questions

The following research questions were addressed in thisinvestigation:

(1) To what extent will following occupational therapyrecommendations, which are derived from Assessment ofInstrumental Function (AIF) results, produce improvementin the quality of life of persons with Alzheimer’s disease liv-ing in the community?

(2) To what extent will following these occupationaltherapy recommendations produce a decrease in the level ofburden felt by caregivers of persons with Alzheimer’s diseaseliving in the community?

Method

Using a pretest–posttest control group design, the AIF wasadministered to two groups of persons with Alzheimer’s dis-ease in their own homes. Caregiver burden and quality oflife for participants with Alzheimer’s disease were used todetermine the effects of the occupational therapy recom-mendations derived from the AIF on the control andtreatment groups.

562 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 recruitedfrom among the clients of a university-affiliated outpatientmemory disorders clinic and their 40 caregivers.Participants lived in their homes or apartments and had acaregiver who lived with them, or spent several hours perweek with them, who was also willing to participate in theinvestigation. Participants with Alzheimer’s disease had notbeen assessed with the AIF as part of the services of thememory disorders clinic in the preceding year and were notreceiving other occupational therapy services. Eligible par-ticipants with Alzheimer’s disease were rated as being inmild to moderate stages of impairment as determined byMini-Mental Status Exam (MMSE) scores (Folstein,Folstein, & McHugh, 1975) of 10 or more on a 30-pointscale (Knapp et al., 1994). Many participants were usingAricept(r), a medication meant to enhance cognition, butnone had begun using it within the previous 6 weeks.Persons with current symptoms of major depression wereexcluded from the study. All participants and caregiversgave informed consent through procedures approved by therelevant 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 andpreparation. Test items are completed with standardizedprops and require performance in common instrumentalADL tasks, such as managing doses of multiple medica-tions, or cooking a light meal. Directed questioning of therespondent and a caregiver helps to individualize the assess-ment by detailing the client’s usual roles, task demands, andsupports. Scoring of the AIF uses a scale in which 2 = inde-pendent performance, 1 = successful performance onlywhen assisted or prompted, and 0 = inability to completethe 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 scoreswere 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 AIFcorrelated significantly with the Katz Index of Activities ofDaily Living (Nadler, Richardson, Malloy, Brinson, &Marran, 1993). Brinson (1996) reported high interraterreliability of the AIF for adults with geropsychiatric disor-

ders with intraclass correlation coefficients (ICC) of .975for experienced raters. The test–retest reliability coefficientsfor each section of the AIF ranged from ICC = .78 to ICC= .87 (Dooley, 1997).

The Zarit Burden Interview is a 29-item questionnairethat 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 caringfor family members with Alzheimer’s disease. Higher scoresindicate greater levels of burden (Zarit, Todd, & Zarit,1986). The instrument measures the stressful emotionalaspects of caregiving and the temporal, social, and interper-sonal burdens of the caregiver. Validity of the BurdenInterview is supported by findings of significantly lower lev-els of burden in caregivers who have more support fromfamily members (Zarit, Reever, & Bach-Peterson, 1980),and the association of higher perceived burden with loweredcoping ability (Zarit et al., 1986). Reliability of the BurdenInterview has been established and it is commonly used tomeasure dementia outcomes for family caregivers (Smyth etal., 1997).

The Affect and Activity Limitation-Alzheimer’s DiseaseAssessment (AAL-AD) (Albert et al., 1996) was created bymodifying two existing scales to create an objective measureof quality of life for persons with Alzheimer’s disease that israted by a caregiver. This assessment includes a rating of thefrequency with which the person with dementia engages inpleasurable activities and displays positive or negative affectas evidenced by clearly defined descriptors. Higher scoresindicate higher levels of engagement and enjoyment ofactivities. Higher scores on the two affect scales, which areconsidered separately, indicate a stronger presence of eitherpositive or negative affect. The criterion-related validity ofthe AAL-AD was supported by significant correlation withother measures of quality of life in dementia, includingADL ability and cognitive status. The assessment has goodinterrater agreement for family and institutional caregiversas evidenced by a lack of significant differences betweenmean scores on activity frequency and enjoyment given bycaregivers 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-basedgroup 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 ofparticipants with Alzheimer’s disease, as a component oftheir quality of life. The PSMS is a caregiver-report measurethat is widely used in clinical and research settings.Reliability coefficients for the PSMS range from .91 to .96


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 fordependence, 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, aregistered occupational therapist, administered the AIF tothe person with Alzheimer’s disease and the AAL-AD,Burden Interview, and PSMS to the caregiver during ahome visit. The investigator then used the AIF results towrite a report summarizing the assessment findings andproviding occupational therapy recommendations to thecaregiver to help maximize the client’s quality of life andability to function. Development of strategies was guidedby the work of Gitlin and Corcoran (1996), elaborating onthe person–environment fit framework described byLawton and Nahemow (1973) (Corcoran & Gitlin, 1991).Researchers avoided experimenter bias by randomly assign-ing the participant pairs to the control or treatment groupafter each report was written.

Occupational therapy recommendations for persons inthe treatment group were reviewed with the person withAlzheimer’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 abilitiesto take part in the problem solving process due to theirsymptoms. Detailed notes were kept regarding the reactionsof the participant with Alzheimer’s disease and caregiver tothe 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 intothree categories: environmental modifications, caregiverapproaches, and community-based assistance. All partici-pants received a combination of all three types of recom-mendations.

The environmental modifications category includedrecommendations of any change or addition to the physicalsurroundings of the person with Alzheimer’s disease.Commonly recommended environmental modificationswere visual cues such as clearly posting emergency tele-phone numbers or labeling drawers and cabinets wherecommonly used items are kept. Some environmental mod-ifications involved the use of adaptive devices such as a pillreminder boxes that are easy for the person with Alzheimer’s

disease to use. Other environmental modifications werehighly individualized, such as placing a bell and a babymonitor at the apartment door so that a man withAlzheimer’s disease would not wander into his building’shallways while his wife was asleep. Items needed for envi-ronmental modification were not provided as part of thisstudy, but specific purchasing information was providedwhen requested.

Strategies in the category of caregiver approaches wereways in which the caregiver could interact with the personwith Alzheimer’s disease to create more opportunities forsuccess in daily living tasks. Caregiver approaches includedsuggestions such as providing a structured daily routine tothe person with Alzheimer’s disease, or involving the personwith Alzheimer’s disease in household chores like preparingmeals, putting away dishes, or making beds. This categoryalso included suggested methods for cueing the person withAlzheimer’s disease to perform at his or her highest level.Examples of cueing were to break down tasks and givedirections 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 oradaptive equipment. There were no structured opportuni-ties to practice the caregiver approaches.

Recommendations for community-based assistancewere referrals to resources available in the local area. Themost common recommendations for community-basedassistance were for caregivers to attend support groupsoffered by the Alzheimer’s Association. Other referrals werefor services in the home such as home-delivered meals forpersons 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 aspharmaceutical assistance, and reduced rates on home-maker services.

One month after completing the AIF, caregivers werecontacted by telephone to complete a second BurdenInterview, AAL-AD, and PSMS. Due to scheduling prob-lems and the demands of caring for a person withAlzheimer’s disease, completion of the follow-up assess-ments was delayed with some caregivers. Caregivers in thetreatment 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 recommendationsincluded more than five strategies in some cases, they werelisted in order of importance, by the principal investigator’s


judgment, and only the top five were recorded. Theresearchers recorded comments from the caregivers abouthow the strategies worked or did not work. The caregiverswere also asked whether any changes had occurred with theclient or family since the initial assessment and these wererecorded. Examples of changes included a client developinga new medical condition, a client moving to a new apart-ment, or the family having taken a vacation. Caregivers inthe 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 GraduatePack 10.0 for Windows with an alpha level of .05 for allanalyses. Cases with missing data, two cases for number ofcomorbid 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 departedsignificantly 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 significantlyrelated to group membership as determined by cross-tabu-lations and Pearson’s chi-square.

Multiple analysis of covariance (MANCOVA) was usedto 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 forthe participants with Alzheimer’s disease, was indicated byPSMS scores. Administration of the AAL-AD producedtwo observed affect variables (negative affect and positiveaffect) and three activity variables (activity opportunity,activity frequency, and activity enjoyment). Because themagnitude 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 onesshould be retained (Tabachnick & Fidell, 2001). The mag-nitude and significance of these correlations are presented inTable 1. The data were analyzed with the goal of retainingone activity variable and one affect variable so that bothcomponents of quality of life measured by the AAL-ADwould be represented along with caregiver burden and self-care status. Activity frequency and enjoyment were so highly

correlated (r = .84, p < .001) that inclusion of both variableswould be redundant (Tabachnick & Fidell). Activity fre-quency was a more objective measure so it was retained forthe MANCOVA.

Tabachnick and Fidell (2001) point out that some sig-nificant correlation among dependent variables helps toincrease the power of MANCOVA to detect treatmenteffects. Examination of the correlation matrix revealed thatactivity frequency and positive affect (r = .65, p < .001)were the most logical of the dependent variables to enterthe MANCOVA equation together. Negative affect wasnot significantly correlated with activity frequency oropportunity.

Thus, for the MANCOVA, treatment was the inde-pendent variable. Posttest scores on self-care status, activityfrequency, positive affect, and caregiver burden were thedependent variables and their pretest counterparts were thecovariates.

ResultsThe following characteristics apply to the 16 men and 24women (n = 40) diagnosed with Alzheimer’s disease whoparticipated in this study. They had a mean age of 77.08(SD = 8.86) years and high school was their median level ofeducation (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 of30 and the majority of participants (60.5%) were takingAricept to enhance cognition. In addition to Alzheimer’sdisease, they had a median of three comorbid conditions,with a range of 1 to 8.

Caregiver participants were mostly women (80%), and70% of them lived with the person who had Alzheimer’sdisease. 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 ofall 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


Table 1. Bivariate Correlations Between Dependent VariablesActivity 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

scheduling meetings and telephone calls with many care-givers, however, the mean follow-up time was actually 2.33months (SD = 1.18), with a range of 1–6 months.

The percentage of strategies followed by caregivers inthe treatment group was determined by calculating thenumber of strategies that each caregiver followed, eithersometimes or often, divided by the number of strategiesthat were recommended to each caregiver. Caregivers in thetreatment group followed a mean of 65.1% (SD = 19.81) ofthe five most important recommended strategies.

Two assumptions for using MANCOVA, equality ofcovariance matrices of the dependent variables acrossgroups and equality of error variance, were tested and satis-fied. The MANCOVA results demonstrated that there wasa significant difference in the levels of burden felt by care-givers and of quality of life for participants with Alzheimer’sdisease associated with the treatment group, after adjustingfor differences in pretest scores on the dependent variables.A significant MANCOVA main effect was obtained forcaregiver burden, positive affect, activity frequency, andself-care status by treatment group, F (4, 31) = 7.34, p <.001. The variance in the main effect attributable to theindependent variable (SPSS, 1999), eta squared (η2), was.49. Sufficient power to detect a Type II error (observedpower = .99) was observed (Cohen, 1992) (Table 2).

Univariate tests of between-subjects effects were used toassess the contribution of each dependent variable to theoverall effect of the four variable MANCOVA. At this level,caregiver burden (F (1, 34) = 15.15, p < .001), positiveaffect (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 ofthe estimated marginal means for each of the three signifi-cant dependent variables were used to detect the directionof change that was associated with the treatment group.This analysis confirmed that the changes noted after theoccupational therapy intervention were as expected. Thepersons with Alzheimer’s disease in the treatment group had

higher levels of positive affect and independence in self-careat the posttest and their caregivers had significantly lowerlevels of burden at the posttest.

DiscussionIn the present study, adherence to occupational therapyrecommendations derived from individualized assessmentproduced significant improvements in quality of life forpersons with Alzheimer’s disease living in the communityand significant diminishment of burden felt by familymembers caring for them. Participants whose caregiversreceived and followed occupational therapy recommenda-tions derived from the AIF had significantly higher scoreson quality of life variables at the posttest than those who didnot receive the recommendations. Caregivers had signifi-cantly lower feelings of burden than those who did notreceive the recommendations.

The MANCOVA results mean that difference intreatment group was most influential on the combinationof caregiver burden, positive affect, activity frequency, andself-care status when pretest scores were held constant.The univariate analyses demonstrated that caregiver bur-den made the largest contribution to the variance in themain effect of the treatment. Demonstration of positiveaffect and improvement in self-care status were the specif-ic components of quality of life that drove the overallimprovement for participants diagnosed with Alzheimer’sdisease.

The present study is one of the first to documentimprovements in quality of life of persons with Alzheimer’sdisease and lower caregiver burden after a brief occupation-al therapy intervention (Gitlin et al., 2001). The presentstudy used a combination of strategies that have evidencefor effectiveness with persons who have Alzheimer’s diseaseand their caregivers including encouraging participation infamiliar daily activities (Josephsson et al., 1993; Teri et al.,1997) and modification of the physical and social homeenvironment (Gitlin et al., 2001; Robinson, Adkisson, &Weinrich, 2001).

Gitlin and her colleagues (2001) found that recipientsof an occupational therapy intervention aimed at the homeenvironment maintained their instrumental ADL abilitiesbetter than members of the control group over a 3-monthstudy period. Certain subgroups of caregivers in the treat-ment group also experienced fewer caregiving upsets. Whilethe present study did not duplicate the home environmen-tal intervention described by Gitlin, Corcoran, Winter,Boyce, & Marcus (1999), there is considerable overlap inthe approaches, as they are both based on theoretical infor-mation describing the fit between a person’s competence


Table 2. Multiple Analysis of Covariance of Caregiver Burden andQuality of Life Variables by Treatment Group: Multivariate Tests

Hypothesis Error Eta ObservedEffect F a df df Sig. squared power

Intercept 1.68 4 31 .179 .177 .456

Self-care 15.44 4 31 < .001 .666 1.00

Caregiver Burden 17.21 4 31 < .001 .690 1.00

Positive Affectb 1.59 4 31 .201 .171 .433

Activity Frequency 11.78 4 31 < .001 .603 1.00

Group 7.34 4 31 < .001 .486 .990a All F tests calculated using Pillai’s Trace (Tabachnick & Fidell, 2001).b Pretest values serve as covariates for positive affect, activity opportunity, andactivity frequency.N = 40

and the demands of his or her environment (Lawton &Nahemow, 1973).

Josephsson et al. (2000) emphasized the need to use aflexible and collaborative approach when helping caregiverssolve the everyday functional problems of individuals withAlzheimer’s disease. It is essential to respect what is valued,meaningful, and habitual to the family and to provideassessment and intervention in the home environment(Sifton, 2000; Toth-Cohen, 2000). Many recommenda-tions were modified during the second visit to families inthe treatment group, to help fit the preferences and usuallifestyles of the families. It is not known whether addition-al sessions would have produced greater improvements inquality of life or more frequent use of suggested strategies bycaregivers.

Caregivers in the present study demonstrated a highdegree of receptivity to the strategies that were recommend-ed to them. The fact that two thirds of the strategies werefollowed indicates that the caregivers tended to see a signif-icant need for help in their daily lives with a person who hasdementia. All caregivers in the treatment group followed atleast one strategy at least part of the time.

Gitlin and her colleagues (1999; 2001) have investigat-ed factors related to caregiver adherence to occupationaltherapy strategies. Depression in caregivers, which was notmeasured 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 researchshould include screening for depression in caregivers anddetermination of the influence of caregiver mental healthon 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 havebeen more successful at improving knowledge levels of care-givers, than at impacting their feelings of burden associatedwith caregiving or at changing the behavior or functioningof 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 smallerthan for those caring for older persons with other problems(Sorenson et al.). The magnitude of the effects on caregiversand persons with dementia in the present study comparefavorably with the mean effects of studies included in themeta-analysis of 78 caregiver intervention studies done bySorenson et al.

This study was the first to use the AAL-AD as an out-come measure for a treatment aimed at persons withAlzheimer’s disease and their caregivers. Measurement of

quality of life of persons who have Alzheimer’s disease ischallenging, and instruments for this purpose have beendeveloped only in the past few years (Lawton, 1997; Rabins& Kasper, 1997). When used with a measure of functionalstatus, such as the PSMS, the AAL-AD appears to be a use-ful tool for measuring some of the more subjective aspectsof quality of life for persons with dementia (Albert et al.,1996; Lawton, 1997). Tools such as the AAL-AD shouldprove very valuable as occupational therapists attempt tofurther quantify their contributions to the care of personswith dementia.

Suggestions for Future Research

In this study significant changes were seen in positive affectin the person with Alzheimer’s disease and decreased care-giver burden with a brief occupational therapy interventionconsisting 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 optimalperiod of occupational therapy intervention for personswith 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 overa longer period of time than the average of 2.33 months inthis study. Also, the use of the AIF could be combined withother interventions to determine if a greater treatment effectcan be obtained. For example, provision of financial andpractical assistance to help make environmental modifica-tions or apply for community-based assistance may improveadherence to strategies and produce even stronger positiveoutcomes.

ConclusionsThe unrelenting progression of Alzheimer’s disease robspeople of their abilities to function in daily tasks and toenjoy life through time spent on meaningful activities. Thisstudy appears to be the first to simultaneously use quality oflife and caregiver burden as measures of the outcome ofoccupational therapy for persons with Alzheimer’s disease.The results of this study support the unique value of occu-pational therapy with progressive conditions such asAlzheimer’s disease, when the prevention of unnecessarydecline and maintenance of quality of life for individualsand caregivers are essential. These promising results presentan opportunity for occupational therapists because theCenters for Medicare and Medicaid Services has recentlydirected that coverage for occupational therapy services forpersons who have dementia cannot be denied solely on thebasis of diagnosis (2001).


Individualized occupational therapy intervention basedon the person–environment fit model using a valid and reli-able assessment, such as the AIF, appears effective for bothcaregivers and clients. Following occupational therapy rec-ommendations produced significant improvements in qual-ity of life for persons with Alzheimer’s disease living in thecommunity and significant diminishment of burden felt byfamily members caring for them.▲

AcknowledgmentsThis article is based on research conducted by the firstauthor in partial fulfillment of the requirements for theDoctorate of Philosophy in Occupational Therapy in TheSteinhardt School of Education at New York University.The authors thank Mary V. Donohue, PhD; and JeffBackstrand, PhD, for support and assistance. We also wishto express gratitude to Paul Malloy, PhD; Stephen Salloway,MD; and Susan Hansen, COTA.

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“Improving Quality of Life for Persons with Alzheimer’s Disease and Their Family Caregivers: Brief Occupational Therapy Intervention"