JAGS 38:446-454, 2990

A Randomized Trial of Family Caregiver Support in the Home Management of Dementia E. Ann Mohide, MSc,* Dorothy M. Pringle, PhD,$ David L. Streiner, PhD,*

I. Raymond Gilbert, MD,* Gisele Muir, MD, * and Michelle Tew, BScN* A randomized trial of family caregiver support for the

home management of older people suffering from moderate to severe progressive irreversible dementia was conducted in an urban center in southern Ontario. Thirty caregivers were allocated to receive the experimental intervention consisting of: caregiver-focused health care, education about dementia and caregiving, assistance with problem solving, regularly scheduled in-home respite, and a self-help family caregiver support group. Thirty control subjects received conventional community nursing care. Before completion of the intervention, 18 (30%)were withdrawn, almost equally from each group.

he negative effects of caring for relatives suffering from progressive irreversible dementias have been demonstrated in numerous Caregivers of demented relatives experience multiple and diverse problems and needs. the need for physical relief from caregiving;"- 'l perceived health p r ~ b l e m s ; ~deficits * ~ J ~ in caregiving knowledge, skills, and problem ~olving;'~-'~ and the need for selfhelp support networks.12~18-21 At the time this study was designed (1985), few studies examining the impact of interventions on family caregivers had been reported.14J9,22,23 A literature review did not reveal any that were randomized, and none of the studies addressed all the above-listed problems using supportive community-based services. As DotyZ4has indicated, the main impact of programs supporting family members who have undertaken the task of caregiving at home

T

From *McMaster University, Hamilton, Ontario, Canada, and the $Faculty of Nursing, University of Toronto, Ontario, Canada. Conducted in Hamilton-Wentworth and Halton Regions, Ontario, Canada. Supportedby a grant from the Ontario Ministryof Health, Research and Planning Division, 1986- 1989. Duringthis study, E. A. Mohide was a Career Scholar with the R. Samuel McLaughlin Centre for Gerontological Health Research, McMaster University, Hamilton, Ontario. At the time of funding, D. M. Pringle was Research Director for VON Canada. Address correspondence and reprint requests to: E. Ann Mohide, MSc, McMaster University, Faculty of Health Sciences, 1200 Main St. W., Room 2J40f, Hamilton, Ontario, Canada L8N 325.

0 2990 by the American Geriatrics Society

The most frequent reason was long-term institutionalization of the demented relative (n = 10). At baseline, caregivers in both groups were suffering from aboveaverage levels of depression and anxiety. After the six-month intervention period, we found neither experimental nor control group improved in these areas. However, the experimental group showed a clinically important improvement in quality of life, experienced a slightly longer mean time to long-term institutionalization, found the caregiver role less problematic, and had greater satisfaction with nursing care than the control group. J Am Geriatr SOC38:446-454,1990

should be to reduce the adverse consequences of this care. The objective of this randomized trial was to determine the effectiveness of a set of supportive interventions, collectively called the Caregiver Support Program (CSP), in reducing burden on family caregivers managing moderately to severely demented elderly at home. The results of the economic analysis are reported separately. METHODS Design Caregiver - patient pairs were recruited from an urban center in southern Ontario and were block randomized using a computer-generated random numbers table to receive the experimental set of interventions-the CSP-or an alternative-termed conventional community nursing care-for a sixmonth period. The decision to offer a form of treatment to the control group was made because subjects probably would not have agreed to be assigned to a "no care" alternative, especially those who were receiving some form of community care at the time of recruitment. The length of the intervention period was based on the judgments of five geriatric clinicians that an overall effect should be demonstrated by this time. Subjects and Eligibility In order to be eligible for enrollment in the trial, both the caregiver and the cognitively impaired relative had to satisfy a number of inclu0002-8614/M/$3.50

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HOME-BASED TRIAL OF FAMILY CAREGIVER SUPPORT 447

sion criteria. Caregivers were eligible if they: (1) lived with the demented relative; (2) identified themselves as the principal family member providing day-to-day care to the relative; (3)spoke English; (4) scored 8 or more on a short mental-status questionnaire;25( 5 ) did not suffer from a life-threateningillness that would prevent them from continuing in the caregiver role over the length of the trial; (6) agreed to have nursing servicesprovided by a specific visiting nursing agency; and (7) gave signed consent to participate. Relatives were eligible if they: (1) had a medical diagnosis of primary degenerative, multi-infarct or mixed dementia; (2) were assessed as moderately to severely impaired;26(3)did not suffer from a serious concomitant illness(es) that would be likely to result in acute or longterm hospitalization or in death during the intervention period; and (4) were not likely to be placed in a longterm care setting by their relatives during the course of the study. All but two caregiversand their relatives were recruited from physicians’ practices, community health, and social services (see Table 1). Caregivers who agreed to be contacted were screened by telephone regarding eligibility criteria. If these criteria were satisfied, a home interview was conducted to confirm the caregiver’s orientation to time, place, and person. The relatives were rated using the Dementia Rating Scale (DRS)27and the Mini-Mental State Examination (MMSE).28Following this,a geriatric nurse clinician, who was blind to the DRS and MMSE test scores, rated the relative using the Reisberg Global Deterioration Scale.26Those with eligible scoreson at least two of the three scales (8 or more on the DRS, 19 or less on the MMSE, Stage 5 or greater on the Reisberg Scale) had their medical records reviewed by a nurse research assistant to confirm the diagnosis of progressive irreversible dementia. A diagnosticwork-up was applied.2gThis included a history, physical, and neurological examination, and laboratory tests including complete blood count, erythrocyte sedimentation rate, creatinine, glucose, calcium, Vitamin BI2, serum folate, electrolytes, venereal disease research laboratory (VDRL), and one of T,, TI,or thyroid stimulating hormone. A computerized TABLE 1. REFERRAL SOURCE AND ELIGIBILITY STATUS Referral Source

Physicians Family physicians Geriatricians Community health

No. Eligible

No. Ineligible

17 8

37

54 (37)

22

27

19

30 (21) 46 (32)

6 2

-

8

14 (10)

60

86

Total (%I

SerViCeS

social services Self-referrals Total

2( 1) 146

axial tomography scan was required only if there were clinical features that were inconsistent with the typical picture of a progressive irreversible dementing illness. Where diagnostic information was lacking, the physician was requested to complete the work-up. An adjudicating committee, consisting of a geriatric psychiatrist, a nurse practitioner with psychogeriatric training, and a family physician, assessed all potential subjects for eligibility using the standardized criteria. Caregiver subjects were stratified on the basis of gender and of whether or not the demented relative attended a day program, to ensure that the groups were balanced with respect to these two variables. In the latter case, severely burdened caregivers might be more likely to have their relative referred to a day program than those who are less burdened. Of the 146 pairs assessed, 86 were ineligible (Table 1). The major reasons for ineligibility included: refusal of caregivers to participate (n = 14; 16%); results of the three screening tests and the diagnostic work-up not confirming progressive irreversible dementia (n = 33; 38%); unstable health of the caregiver or relative (n = 12; 14%); imminent institutionalization of the older relative expected (n = 10; 12%); or other (n = 17; 20%). Recruitment and Training of Nurses and Respite Workers Community nursing services were provided by Hamilton-Wentworth and Halton Branches of the VON Visiting Nursing Program, a nonprofit organization. Nurses who were not contemplating a job change and had a minimum of one year of community nursing experience were invited to participate, and 11 volunteered. Three nurses were randomly allocated to the experimental CSP intervention and the eight others were allocated to the conventionalcare group. Having a larger number of nurses providing care to the control group decreased the likelihood that the nurses would change their nursing practice as a result of having an artificially inflated proportion of demented patients on their caseloads. The three Caregiver Support Nurses (CSNs) in the experimental group and the CSP team supervisor received an intensive 80-hour training program (outline available from E. A. M.) covering content such as caregiver needs and problems, methods of enhancing caregiver control over the caregiving situation, and the community care of demented elderly. The training was provided by a multidisciplinary team that included a geriatric psychiatrist and a community psychogeriatric nurse consultant. The CSNs met with the nursing supervisor weekly, or more often as needed, to discuss management issues and to ensure that the CSP interventions were being applied in a consistent manner.In addition, monthly consultation was provided by the community psychogeriatric nurse. Respite workers were recruited from the Hamilton-

448 MOHIDE ET AL

Wentworth Visiting Homemakers Association. Over a six-week period, the respite workers received 18 hours of training in order to work with demented patients (training outline available from E. A. M.). Description of the Interventions The experimental set of supportive interventions was directed at helping the caregivers enhance caregiving competence and achieve a sense of control in their roles as caregivers. The CSNs were assigned to caregivers and made regularly scheduled home visits at a time that was convenient to the caregivers.Initially, these visits were weekly and were adjusted upward or downward depending on the needs of the caregiver. Health assessments of all caregivers were completed using forms designed to encourage the assessment of common caregiver problems. Caregivers were encouraged to seek medical attention for neglected health problems, such as hypertension. The CSNs consulted with the caregivers' family physicians on a regular basis whenever the caregivers' health was judged to be unstable. The caregivers received dementia and caregiving education using content and teaching methods tailored to the subjects' knowledge level, caregiving situation, and learning style. All caregivers received a copy of The 36-Hour Day" for use as a ready reference. At the beginning of the intervention, the caregiverscompleted the Texas Research Institute of Medical Sciences (TRIMS) Behavioral Problem ChecklisP identifying the relatives' problems that were most troublesome to the caregivers. Using the Checklist, the CSNs helped the caregivers examine solutions that would prevent excessive disability and enhance the remaining functional capacitf2 while helping them to gain mastery in their caregiver roles. The CSP interventions included a four-hour block of scheduled weekly in-home respite. The workers were assigned to specific families and were encouraged to discuss the demented patients' plan of care with the assigned CSN. The weekly respite permitted the caregivers to anticipaterelief from the rigors of caregivingon a consistent basis and the on-demand respite provided relief between periods of scheduled respite. Finally, caregivers and other interested family members were encouraged to attend a monthly two-hour self-help caregiver support group specifically for families with demented relatives. In the control group, conventional (existing)community nursing focused on care of the demented patient, rather than care of the family caregiver. This care addressed the physical needs of the demented patient such as bathing, grooming, managing incontinence, and medication monitoring. Although some time might be spent discussing the patient's behavioral problems with the caregivers, this was not the main focus of the home Visit. The control group nurses were assigned specific Patients on the basis of geographic location and the frequencyof Visits was left to the nurses' &metion. The

IAGS-APRIL 1990-VOL 38, NO.4

control group nurses did not have concentrated training in this content area and did not use the consultative services of psychogeriatric clinicians. Caregivers were not recommended to receive other health and social services in a standardized or systematic manner. The participants incurred no charges for the services provided by the trial. Measures and Data Collection Ideally, the primary outcome variable for a trial such as this should be a direct measure of caregiver burden. Accordingly, the psychometric properties of several measures of caregiver b ~ r d e n ' ,were ~,~~ appraised, but none of the measures were shown to be responsiveto change in previous studies. Consequently, it was necessary to select symptom-specific instruments. Because negative emotional affects, in particular depressive and anxiety symptomatology, were cited frequently in the l i t e r a t ~ r e , ~ , ~ ' - ~ ~ these were used as the major outcomes of interest. Measures with sound psychometric properties were selected: the Center for Epidemiologic Studies Depression Scale (CES-D)37and the state-anxiety portion of the State-Trait Anxiety Inventory (STAI).38When responding to the scale, subjects were asked to consider the past week, in order that the scale be responsive to changes in circumstances and yet not be overly dependent on daily fluctuations in mood. This modification is consistent with the CES-D Scale response interval of one week. In addition to these two major outcomemeasures, the caregiver's quality of life was assessed using the Caregiver Quality of Life Instrument (CQLI),39an application of the time trade-off technique."' Using the time trade-off technique, the subjects decided how much length of life (expressed in future years of life) to trade off for improved quality of life (expressed in terms of dimensions of health, eg, physical, psychological, or social function). To achieve this, subjects were asked to choose between being in two alternative health states for different periods of time. The resulting health state score ranges from 0 to 1 with 1 indicating the highest quality of life. Descriptive data were collected regarding the health history of the caregivers and demented relatives, health care and supportive service utilization, and the types and amount of caregiving activities. The caregivers' self-rated health was assessed using a seven-pointscale, and the Cantril Self-Anchoring Striving Scale" was used to measure life satisfaction. A scale to measure the impact of caring for demented relatives on the caregivers' day-to-day lives was developed for the study. Items included potential caregiving problems such as the ability to keep the home clean and tidy, ability to shop, ability to have visitors in the home, and whether caregiving put strain on other family relationships. The respondents first indicated which of the 10 items had occurred. They then rated, on a four-point scale, the extent to which each endorsed problem bothered them.

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HOME-BASED TRIAL OF FAMILY CAREGIVER SUPPORT 449

The total score was derived by summing over the items (minimum = 0, maximum = 40). Caregivers also were asked to rank the services that they received in order of helpfulness. A thermometer was used as a prop for the ranking. Finally, the demented relative’s functional status was assessed using the modified Barthel Index.’z The research assistant interviewed the subjects at entry, midpoint (three months), and upon completionof the intervention at six months. If long-term care placement was anticipated, an end-of-study interview was conducted prior to the withdrawal wherever possible. Just before completion of the study participation, all subjects’ service needs were reviewed by a multidisciplinary group. Subjects and their demented relatives were referred to community agenaes as appropriate. Twelve to 18 months following completion or withdrawal from the trial, a follow-up home interview was conducted with 50 of the 60 caregivers (four had died, and six refused to participate). The purpose of the follow-up was to examine the caregivers’ perceptions of the nature and types of services that would be helpful to others in their situations. Although blinding of caregivers and service providers was not possible, the research assistant instructed the subjects not to divulge the intervention(s) being received. The demographic data were analyzed using a t-test and f . The major effectiveness analyses were conducted using multivariate analysis of covariance(MANCOVA) with between-group and within-group independent variables (intervention and time, respectively), and three dependent variables (CES-D, STAI, CQLI).

Analysis of covariance(ANCOVA) was used to examine individual outcome measures. Pearson’s Y was used to examine correlations and stepwise regression to examine the variance accounted for by specific variables. With respect to the ranking of health and supportive services, the three most helpful serviceswere assigned a numerical value representing the level of helpfulness. The scores for each service were totalled to provide preference scores. Two-tailed tests were always used with 5% probability level to discriminate sigruficant from nonsigruficant findings. RESULTS

Sixty caregivers were enrolled in the trial. Table 2 provides the baseline characteristics of the 30 subjects allocated to each group. The groups did not differ on most of the variables. There was a statistically sigruficant difference in the caregivers’ perception of the length of caregiving between the two groups. Three control subjects had extremely long periods of caregiving in comparison to the other subjects; only two of the three completed the trial. Overall, the experimental group had a higher annual family income than the control group. In addition, there was a marginally sigruficant difference in the mean DRS score, although this does not appear to be clinically important. Of the ineligible subjects, 57% of the caregiverswere spouses and the mean DRS score was slightly lower (7.72, SD = 4.7). Of the 14 who were ineligible because of refusal, over half did so during the telephone interview. No sigruficant differences in patient or caregiver

TABLE 2. CHARACTERISTICS OF THE CAREGIVERS AND THEIR RELATIVES AT BASELINE

Characteristics Caregiver No. of females No. of spouses Wife Husband Mean age Mean months of caregiving No. with some or all high school education Mean annual income No. with moderate to extremely well self-rated health No. using psychotropic drugs Demented relative No. of females Mean age Mean DRS score No. at Stage 5 or 6 on the Reisberg Global Deterioration Scale Mean MMSE score No. with Alzheimer-type dementia Mean Barthel score

Experimental Group (n = 30) No. (% or SD) 21 14 7 66.10 39.80 23 $27,607 22 3

(70%) (47%) (23%) (13.47) (30.23) (77%) (19,708) (73%) (10%)

Control Group (n = 30) No. (% or SD) 22 17 8 69.40 72.40 18 $18,155 20 3

P value

(73%) (57%) (27%) (8.61) (61.93) (60%) (11,930) (67%)

.013 .035

(10%)

15 77.80 8.75 27

(50%) (9.19) (3.01) (90%)

14 75.90 10.75

26

(47%) (7.70) (4.75) (87%)

13.21 19 68.67

(6.83) (63%) (18.1)

11.04 21 62.50

(6.17) (70%) (24.52)

.057

450 MOHIDE ET AL

IAGS-APRIL 1990-VOL 38. NO. 4

TABLE 3. REASONS FOR WITHDRAWALS AND MEAN NUMBER OF WEEKS IN THE STUDY Control Group (n = 10)

Experimental Group (n = 8) Reasons for Withdrawals

No.

Mean Weeks in Study (SD)

No.

Mean Weeks in Study (SD)

Long-term placement of relative Hospitalization of relative >one month Caregiver death Relocation outside of study catchment

5 2

17.20 (6.87) 3.00(4.24)

5 4

10.40 (5.03) 7.25 (3.30) 21.00

-

-

1

-

11 .oo

1

sex, age, and familial relationship were found between ineligible subjects and those who refused to participate. Only 42 (70Y0) caregivers completed the trial: 22 in the experimental and 20 in the control group. The reasons for withdrawal and the mean number of weeks in the study are shown in Table 3. Those in the experimental group who were institutionalized in long-term facilities during the trial remained in the study for an average of 17.2 weeks, whereas those in the control group were placed after an average of 10.4 weeks (P > .05). Overall, there were no statistical differences in the characteristics between those who completed the trial and those who withdrew. The characteristics of withdrawals were compared across the two groups. In the control group, those who withdrew had a much longer period of perceived caregiving (85.2 months, SD = 59.9) than in the experimental group (28.1, SD = 18.8; P < .016). Although not statistically different, the mean annual income of those withdrawn in the experimental group ($25,428, SD = 13,233) was higher than in the control group ($15,444, SD = 6,583). In addition, the relatives in the experimental group had a slightly lower DRS score (8.0, SD = 1.93) than those withdrawn from the control group (11.45, SD = 4.52). Effectiveness analyses were conducted on those who completed the trial. The mean scores of the major outcome variables used in this analysis are provided in Table 4. The covariates used in the MANCOVA included the baseline values for the major outcomes and the variables that differed between groups (annual family income and perceived length of caregiving). The three outcomes (CES-D, STAI, and CQLI) were examined individually using ANCOVAs with the same covariates. There were no statistically sigruficant differences for any of the analyses.

-

For purposes of comparison, we conducted an intentto-treat analysis that included those who completed at least 18 weeks of the intervention.This did not alter the values to a clinically important extent, and there were no significant differences between the groups. The mean CES-D scores at baseline showed a minor level of clinically important depressive symptoms, more so in the experimental than the control group. The depression scores remained relatively stable in the experimental group and increased slightly in the control group. The raw scores for the STAI were used, as tscores or percentile scores derived for similar populations were not available. The STAI scores revealed that the subjects suffered moderate anxiety at baseline, and this level remained quite stable over the three assessment points, although the STAI did increase very slightly in the control group at the end of the trial. Despite the constancy of the depressive symptomatology and the anxiety scores, the quality of the caregivers' lives, as measured by the CQLI, increased in the experimental group, while it decreased in the control group. By the end of the trial there was a difference of 2OYo from the baseline scores favoring the experimental group. We judged this 20% difference to be clinically important. However, a sample size of 178 subjects per group would be required to show that this difference is statistically ~igruficant.'~ At baseline the mean score for the day-to-day impact scale in the experimental group was 18.91 (SD = 8.64) and 15.25 (SD = 8.10) in the control group. The prepost differences between the two groups were examined using an ANCOVA, with the preintervention score serving as a covariate. There was no sigruficant difference. However, at study completion there was a decrease to a mean score of 16.91 (SD = 9.05) in the exper-

TABLE 4. MEANS (AND SD) FOR THE MAJOR OUTCOMES Experimental Group (n = 22) Measure

CES-D STAF CQLI

Control Group (n = 20)

Baseline

Three Months

Six Months

Baseline

Three Months

Six Months

21.55 (11.57) 50.41 (16.40) .55(.33)

18.36(11.78) 46.68 (11.56) .58(.37)

21.50 (12.98) 49.64 (14.48) .64(.33)

15.40 (9.21) 46.25 (12.62) .56t(.41)

15.35 (7.45) 46.85 (9.35) .52t(.42)

18.20(10.05) 48.50 (14.38) .53t(.41)

'Ra w scores for the STAI state-anxiety scale.

t n = 19, one subject did not complete the CQW at baseline.

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HOME-BASED TRIAL OF FAMILY CAREGIVER SUPPORT 451

imental group; the control group score increased slightly to 16.65 (SD = 8.74). A paired t-test showed a sigmficant within-subject change (P< .05) in the experimen-

tal group but not in the control group. The mean number of visits and minutes per visit made by the nurses and the number of office visits made to family physicians during the intervention period are shown in Tables 5 and 6, respectively. A surprising number of visits in the experimental group were directed at care of the demented patients. These latter visits were for health-status monitoring or physical care, such as bathing and grooming. The frequency of visits to demented relatives were almost the same in both groups. Although there is some evidence of experimental-group nurses performing duties carried out by nurses in the control group, the reverse does not appear to have been operating to the same extent. The mean number of visits to family physicians did not differ between the two groups, but more visits related to caregiving were made in the experimental group. Table 7 provides a breakdown of the preference scores for the three most helpful services, as perceived by each of the caregivers. In the experimental group, the nurses had a substantially higher preference score than the control group. In the control group, the nurse and physician scores were almost identical. The disposition of demented relatives 12 to 18 months after completion or withdrawal from the trial is given in Table 8. Only 22% of the demented relatives were still residing at home. No group differences were found for the 25 caregivers whose relatives were hospitalized or placed in long-term care after completion of the intervention. The mean CES-D score was 13.4 (SD = 10.5) and the mean STAI score was 40.65 (SD = 12.9), representing a drop in both depressive symptomatology and anxiety. Eight of the 13 caregiversstill managing their relatives at home agreed to be assessed using the CES-D and STAI. Both the mean CES-D (20.9, SD = 13.6) and the mean STAI (52.4, SD = 13.0) were comparable to the study completion scores. At the follow-up interview, we asked caregivers to

TABLE 6. MEAN NUMBER (RANGE) AND TYPE OF VISITS TO FAMILY PHYSICIANS

Visits to Family Physicians

Experimental Group

Control

No. of office visits to family physicians Types of visits

3.23 (0-10)

3.16 (0-12)

.41 (0-5) 1.36 (0-9)

1.OO (0 - 3) 1.26 (0-5)

1.05 (0-5) .41 (0-4)

.37 (0-3) .58 (0-3)

Routinely scheduled Not related to caregiving Related to caregiving Reason for visit

indeterminant identify important services that should be offered to other caregiversmanaging demented relatives at home. With respect to respite, caregiversin both groups identified the importance of the availability of trained, inhome respite workers, sufficient respite hours per week, and flexibility in scheduling respite. Other respite-related activities recommended were vacation respite and someone to take the demented relative out for short excursions. The need for patient stimulation programs was also identified. Eleven caregiversin the experimental group identified the caregivers' need for personal support, involvementin making decisions about service issues such as flexibility in the amount and timing of respite services, and the ability to obtain services on less than a day's notice. Only three caregiversin the control group identified similar needs. DISCUSSION

We have found that family caregiversmanagingmoderately to severely demented elderly at home suffer from depressive symptomatologyand anxiety above the levels that would be expected for the general public,",u but not in the moderate to high range. Furthermore, TABLE 7. PREFERENCE SCORES FOR SERVICES RANKED AS THE THREE MOST HELPFUL

Type of Service TABLE 5. MEAN NUMBER AND DURATION OF NURSE VISITS

Tvue of Visits Visits to caregiver Mean visits/26 weeks Mean minutes/visit Visits to patient Mean visits/26 weeks Mean minutes/visit

Experimental Grouv

Control

22.7 (n = 22) 61.6

2.5' (n = 2) 52.6

18.7 (n = 17)t 52.1

20.6 (n = 20) 49.6

Separate caregiver visits from those made to patient.

Grouv

t Separate patient visits from those made to caregiver.

Group

Experimental Group (n = 22)

Control Group

Personnel

VON nurse Family physician Homemaker Respite worker Day care support group

59 (22)+ 36 (22)t 23 (9)t 21 (19N 17 (8)t 3 (lo)§

43 (20) 42 (20)t 32 (12)t 5 (1)t 16 (8)t 0 (1)t

(n= 20)

Minimum possible score = 0; maximum = 100 Number in parentheses refers to number of subjects who received service. t Semices obtained beyond the scope of the trial. $ Three experimental subjects declined respite. fj Twelve experimental subjects declined the support p u p .

452 MOHIDE ET AL

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TABLE 8. STATUS AND NUMBER OF DEMENTED RELATIVES AT FOLLOW-UP Experimental Grow*

Control Grouut

Deceased Placed in long-term care Still at home In hospital Unknown

10 11

11

19 (32) 22 (37)

6 3 0

7 0 3

13 (22) 3 (5) 3 (5)

Total

30

30

Status

9

Total (%)

60

One caregiver deceased.

t Three caregivers deceased. neither group intervention reduced the levels of these, nor did the groups differ statistically. Even if the study had had sufficient power to detect a statistically sigruficant difference between the groups on these two measures, the magnitude of these differences would not have been clinically important. Although the experimental intervention was designed to address the multidimensional problems and needs that caregivers are likely to experience and to provide practical community-based services, it did not lessen the degree of dysphoria or anxiety. However, at the end of the trial, there was a trend favoring the experimental group: improved caregiver quality of life, decreased impact on the caregivers' day-to-day lives, delayed long-term institutionalization,and greater consumer satisfaction with nursing care. We found that 23 (55%) of those who completed the trial were at or above the CES-D cut-off point of 16 for possible clinical symptomatologyboth at baseline and at study completion. This figure is comparable to the proportion of caregivers that Cohen and Eisdorfer7found to be clinically depressed in their sample. Using a modified CES-D scoring schema, Lawton et a146found that caregivers experienced depressive symptomatology at a level equivalent to the conventional CES-D cut-off point of 16. Similarly, Baumgarten et a147found that 30% of caregivers of demented relatives had a CES-D score at or above the cut-off point of 16. They also found a statistically lower score for age-matched noncaregiving subjects living with close relatives (P < .01). We selected 45 as the STAI cut-off point (lowest = 20, highest = 80), and found that 22 of the 23 with depressive symptoms also showed evidence of anxious symptomsat or above the cut-off point, both before and after the intervention. The lack of impact on the major outcome measures in this intervention trial is consistent with the limited impact found in several other studies.23~46*48~49 There are a number of possible explanations for finding no differences in the CES-D and STAI measures. The burdens of

caring for a relative with dementia may be intractable or the stages chosen for the study (moderate to severe progressive irreversible dementia) may have been too late for any intervention to make an impact on emotional distress of caregivers. Although differences may be found in the earlier phases of dementia, it might be difficult to interest caregivers in an experimental intervention if they perceive that they are managing adequately with the early manifestations of the degenerative process. As well, they may be unwilling to accept a provisional diagnosis of dementia. Other explanations include the possibility that the experimental intervention was not potent enough or was minimized because some experimental subjects did not accept all aspects of the intervention, particularly the support group. Perhaps the services obtained beyond the scope of the study by the control group minimized the group differences that could be shown. Finally, it may be that measures of emotional symptomatologyare not the optimal constructs to be used as major outcome variables. An important methodological difficulty encountered during the execution of this study was the high attrition rate. Even the precaution of screening those who were not likely to remain at home did not prevent high attrition, and we were not able to identify correlatesof study withdrawal or completion. To show that the experimentalgroup CQLI score was statistically different from the control group on completion of the trial, a much larger sample size would have been required. Because this study utilized a population base of approximately500,000 for recruitment, a multicenter trial would probably be needed to reach the relatively large sample size required. In addition to the administrative complexities that would be encountered, the difficulties of establishing and maintaining comparability of community services and trial interventions across different urban centers would be great. Clinicians should probably assess patients known to be family caregivers for emotional symptomatology,especially depressive symptornatology, as suggested by Goldman and Luchins50 in a case series report. Interventions such as individual psychotherapy, counseling, or pharmacological agents may reduce emotional distress. However, Fitting et alMhave noted that the dysphoric mood reported by caregivers of dementia patients may "reflect their demoralized state rather than a major depression" (p 250), in that the caregivers are unable to change the outcome of their relatives' condition. This may lead caregivers to feel a sense of despair. Becker and Momssefl have advocated that the research agenda should include the differentiationof clinical depression from depressive symptomatology and despair among caregivers. The two former manifestations may require treatment; despair may be an existential issue. Beyond identifying that caregivers experience emo-

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HOME-BASED TRIAL OF FAMILY CAREGIVER SUPPORT 453

tional symptomatology, a caregiver-focused intervention that has been shown to reduce the emotional symptoms to a clinically important extent cannot be recommended at this point. Nonetheless, we have identified a set of interventions suggesting improvement in the caregivers‘ quality of life, despite the constancy of emotional symptomatology. Further caregiver intervention studies should be done to examine other relevant outcome variables, particularly those that include quality-of-life measures applicable to family caregivers.

20. 21. 22. 23. 24.

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A randomized trial of family caregiver support in the home management of dementia.

A randomized trial of family caregiver support for the home management of older people suffering from moderate to severe progressive irreversible deme...
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