IAGS 37:593-598, 1989
Education to Assist Spouses in Coping with
Alzheimer’s Disease
A Controlled Trial
Patricia Chiverton, RN, MS,* and Eric D. Caine, MDf
This study investigates whether a brief educational
program, provided to spouses of patients with Alzheimer‘s
disease, improved the caregivers‘ coping skills; it also
questions whether the gender of the spouse had an effect
on coping ability. The sample consisted of 40 spouses
who were caring for the Alzheimer patient at home, 20
who participated in the educational program, and 20
controls. The instrument used for the study was the
Health Specific Family Coping Index (HSFCI). This in-
strument provided a quantitative assessment of overall
family coping with both potential and actual health
problems in the psychosocial and physical domains of
health. It is rated in nine domains: physical indepen-
dence, therapeutic competence, knowledge of the condi-
tion, application of principles of personal hygiene,
attitude toward health care, emotional competence,
T
his study investigates the impact of an educa-
tional program on the coping ability of spouses
of patients with Alzheimer’s disease (AD).
Coping has been defined by Lazarus and Folk-
man1 as the process of managing demands (external and
internal) that are appraised as taxing or exceeding the
resources of the person. The specific aims of this study
are to evaluate the efficacy of an educational program
From the *School of Nursing, and tSchool of Medicine and Den-
tistry, University of Rochester, Rochester, New York.
Supportedin part by grants from the American Nurses’Foundation
(Mrs Chiverton),UR-NIMH CRC for the Study of Psychopathologyof
the Elderly MH00473 (Dr Caine), and MH40381 (Dr Caine and Mrs
Chiverton).
Address correspondence and reprint requests to Patricia Chiverton,
RN, MS, University of Rochester Medical Center, 300 Crittenden
Blvd, Rochester, NY 14642
0 1989 by the American Geriatrics Society
~ ~
family living patterns, physical environment, and use of
community resources. A home visit was made by a
registered nurse prior to the educational intervention and
at the end of the four-week intervention period. The
HSFCI was completed at each visit. There were no
pretreatment differences between the intervention and
control groups in coping ability. Findings indicate that
the educational program was beneficial in assisting
spouses to feel greater competence in the face of the dis-
ease process and to function with greater independence.
In the treatment group, the greatest significant increase
was in the knowledge domain, followed by therapeutic
competence and emotional competence. There was no
overall relationship between gender of the spouse and
coping ability. J Am Geriatr SOC37:593-598, 1989
for improving coping by spousal caregivers, and to ex-
plore whether the gender of the spouse has an effect on
coping, either before or after an educational interven-
tion. We anticipated that improving the knowledge of
the spouse of the AD patient would allow him/her to
function more effectively in a caregiving role.
Despite myths regarding families who abandon dis-
abled, elderly relatives, demented patients are cared for
~ - ~ knowledge regarding AD,
primarily at h ~ m e .Specific
including how to manage its associated problems and
services available in the community, assist families to
keep the demented elderly out of institution^.^ Misin-
formation or a lack of information often heightens nega-
tive feelings and further promotes feelings of guilt and
ambivalence in family members.2*6This works to the
detriment of both the patient and the family maintain-
ing home care. Directly related to lack of information is a
lack of knowledge of services for the AD patients. When
0002-861 4/89/$3.50
594 CHIVERTON AND CAINE
this information is not provided to the family, they may
quickly become overburdened and unable to “cope.”
Education theory has been successfullyused to improve
the coping ability of medical and surgical patients by
providing them with information or instruction on cop-
ing
While the information required by families has been
well documented, few studies have examined the effect
of an educational program on a family’s coping ability.
One author found that families of the mentally impaired
elderly, provided with a basic knowledge of the behav-
ioral consequences of brain damage in the aged, were
able to solve problems more effectively.’O Other authors
have described the effectiveness of information or sup-
portive intervention^.^^"-^^ However, neither the evalu-
ation of process or outcome or the use of control groups
have been a priority in these programs. Empirical data
regarding education and support programs is lacking.
For this exploratory project, we hypothesized that
there would be an increase in family coping ability, as
indicated on the Health Specific Family Coping Index,
for those AD families participating in our educational
program, while we would detect no systematic change
in coping ability for those families in the control group.
Additionally, we postulated that the gender of the
spouse would not have an effect on measured coping
ability, either before or after the educational interven-
tion.
METHODS
Participation in this study was solicited from families
attending the Alzheimer‘s Disease and Memory Dis-
orders Clinic of Strong Memorial Hospital, the Roches-
ter chapter of the Alzheimer’s Disease and Related Dis-
orders Association (ADRDA), and the Monroe County
Long-Term Care Program. Eligible family members
were restricted to spouses. Each spouse had to be caring
for the AD patient at home at the time of the study. No
specific exclusion criteria were used, except for spouses
who were in the process of placing a patient in an insti-
tution.
Forty-seven family members participated in the
study. Spouses were alternately assigned to the study or
control group; given the small size of the study sample,
no effort was made to prospectively assign members on
the basis of potential confounding variables. Four
spouses began the study but failed to continue to meet
the study criteria; two patients were admitted to the
hospital for acute medical/surgical problems; one pa-
tient fell and was hospitalized for a fractured pelvis; and
the fourth was hospitalized for an acute gastrointestinal
disturbance. Three others were excluded because one
patient‘s spouse died, one pabent died, and one couple
went to live with their son and daugher-in-law. As a
result, 40 spouses completed the study, 20 in the study
group and 20 in the control group. Ages of the spouses
JAGS-JULY 1989-VOL. 37, NO. 7
ranged from 58 to 87 with a mean age of 71. Educational
background ranged from completion of the 6th grade
through graduate school.
Measurement Instruments The instruments used for
this study were the Health Specific Family Coping Index
for Non-Institutional Care (HSFCI)14and the CIinical
Dementia Rating Scale (CDR).15 The HSFCI rates po-
tential and actual health problems in the psychosocial
and physical domains of health. It is rated in nine do-
mains, each with scores ranging from 1 to 5. Domains
included: Physical Independence, Therapeutic Compe-
tence, Knowledge of Condition, Application of Princi-
ples of Personal Hygiene (General Hygiene), Attitude
Toward Health Care, Emotional Competence, Family
Living Patterns, Physical Environment, and Use of
Community Resources. These domains are defined as
follows:
1. Physical Independence -a family’s ability to move
from one place to another in order to obtain what it
needs
2. Therapeutic Competence -applying procedures or
treatments prescribed for the care of illness, such as
giving medications
3. Knowledge of Condition -a family’s knowledge of
facts, including principles underlying treatment rec-
ommendations
4. General Hygiene-a family’s ability to maintain
and carry out preventive measures
5. Health Attitudes- the way the family feels about
health care
6. Emotional Competence -the psychological re-
sources the family has to face the problems it con-
fronts daily
7. Family Living- how well each member of the fam-
ily fulfills his/her role within the family system
8. Physical Environment-the home and community
environment as it affects the physical or mental
health of each family member
9. Community Resources-extent to which the family
knows about and appropriateness with which it
uses community resources.
The HSFCI has been subjected to reliability and valid-
ity testing by Choi and his colleague^.^^ Interrater reli-
ability was high (.97).14The CDR Scale15was used to
determine the severity of the patients’ dementia. It rates
patients on six categories and assigns a rating between 0
(healthy) and 3 (severe dementia).
A home visit by a registered nurse was made to all
participants before the education program and four
weeks after, timed to follow the programmed interven-
tion. The HSFCI was completed at each visit to establish
health attitudes and actual knowledge of the care of the
patient with AD. The registered nurse was blind to the
group to which each spouse was assigned.
JAGS-IULY 1989-VOL. 37, NO. 7 EDUCATION IN COPING FOR SPOUSES 595

Data regarding demographic features and severity of had participated in the study, the difference would have
illness were collected at the time of the first home visit. been more meaningful.
The following information was obtained: gender and None of the other variables studied (CDR, duration of
age of caregiver, physical status of caregiver, family illness, education level of spouse, or gender) showed a
supports, attendance at ADRDA support groups, educa- significant difference between groups. Most impor-
tional level of caregiver, socioeconomicstatus of family tantly for this research, the initial HSFCI scores (our
(Hollingshead Scale), and quality of relationship as per- primary dependent variable) of the study and control
ceived by caregiver. Severity of illness data were col- groups were not different.
lected using the CDR scale, and the length of illness was Many of the participating spouses, 14 in the treatment
defined as dating from the time of diagnosis, given the group and 15 in the control group, had one or more
insidious, gradual, difficult-to-define onset experienced physical disorders and one study group participant was
by many patients. being treated for a psychiatric disorder. Subjects were in
The study group participated in three educational contact with other family members in 82% of the cases.
sessions. These sessions were led by a registered nurse This was the same for study and control group partici-
and were conducted during a three- to four-week pe- pants. This contact varied from occasionalphone calls to
riod, depending in part on the scheduling needs of the daily visits. The supportive aspect of these contacts was
participants. Three to six spouses participated in each not measured systematically.
educational group.
Analysis of Intervention Effect The first hypothesis
Content of Education Program Three sessions were of the study stated that there would be an increase in
provided for each participant in the treatment arm of the spouses’coping ability, as indicated on the Health Spe-
study. Each session was approximately two hours in cific Family Coping Index, for participants in an educa-
duration, consisting of a didactic presentation followed tional program, and no systematic change in coping
by a group discussion. The first educational module fo- ability for those spouses in the control group. A t-test on
cused on the disease process, including diagnostic eval- the change between the pre- and post-intervention total
uation, clinical course, and genetic implications. Issues coping score of the two groups showed a significant
such as available treatments (medications, etc) were dis- difference (t = 4.09, P < .004). The study group had a
cussed as well as current research hypotheses. Also in- mean change of 5.56 (SD = 3.64) while the control
cluded in the first module were the changes that occur in group had a mean change of 0.444 (SD = 38).
roles and responsibilities of family members, and a con- Table 2 shows the mean and total scores, by category,
sideration of feelings associated with these changes. The before and after the education program. There were
group discussion following this module varied, largely significant differences (by t-test) for three categories:
reflecting degree of prior acceptance of the disorder by Therapeutic Competence (t = 2.85, P < .Ol), Knowl-
the participating spouse. edge ( t = 4.01, P < .001), and Emotional Competence
The second module emphasized general communica- (t = 2.35, P < .03).
tion skills and behavioral management techniques. The The second study hypothesis was that the gender of
ensuing group discussion addressed personal concerns, the spouse would not have an effect on coping ability
with members discussing how to deal with specific either before or after the educational intervention. A
problems. Practical difficulties, such as wandering and one-way analysis of variance of the relationship be-
traveling with an AD patient, were considered. tween gender of spouse and change in coping showed
The last module reviewed basic strategies regarding no significant effect. We concluded that both husbands
activities of daily living (eg, feeding, bathing), and and wives benefited from our educational intervention.
stressed defining resources available in our community
for assisting caregivers. The need to plan for respite care DISCUSSION
was considered, and the supportive role of lay organiza- Limitations of this study included the lack of partici-
tions (eg, ADRDA, church groups) was emphasized. pants from the lowest socioeconomic class and from
nonwhite ethnic groups. Also, standardized data were
RESULTS
not collected regarding family support systems, pre-
Table 1 describes the sociodemographiccharacteristics morbid rela tionships, or the personality characteristics
of the study and control group subjects. Paired t-tests of the caregiving spouse. However, our findings are
were done to compare the demographic variables of the useful as an initial investigation of the short-term effects
two groups. The mean Hollingshead socioeconomic of a relatively brief education program upon measurable
status (SES) of the study group was 2.70, while that of attitudes among spouses of AD patients.
the control group was 3.15. This was found to be statis- The results of the study suggest that an educational
tically significant but should not affect the results of the program can improve a spouse’s ability to deal with the
study. If individuals in the lowest socioeconomicgroup daily demands presented by a patient with Alzheimer’s
596 CHIVERTON AND CAINE JAGS-JULY 1989-VOL. 37, NO. 7

TABLE 1. SOCIODEMOGRAPHIC CHARACTERISTICS OF SPOUSES IN INTERVENTION

AND CONTROL GROUPS
Sociodemographic Factors Total Intervention (%) Control (96)
Gender
Male 19 10 (52) 9 (48)
Female 21 10 (48) 11 (52)
Age
50-59 2 1(5) 1(5)
60-69 18 12 (60) 6 (30)
70 - 79 9 4 (20) 5 (25)
80-89 11 3 (15) 8 (40)
SES
2 10 7 (35) 3 (15)
3 22 12 (60) 10 (50)
4 8 1 (5) 7 (35)
Education
Grammar or + 6 2 (10) 4 (20)

CoIlege or + +
High school or 15
19
8 (40)
10 (50)
7 (35)
9 (45)
Patients’ CDR score
1 13 9 (45) 4 (20)
2 17 7 (35) 10 (50)
3 10 4 (20) 6 (30)
Patients’ duration of illness (years)
0-2 6 2 (10) 4 (20)
3-5 9 3 (15) 6 (30)
6-8 20 11 (55) 9 (45)
9+ 5 4 (20) 1(5)
Quality of relationship
Fair 7 2 (10) 5 (25)
Good 21 10 (50) 11 (55)
Excellent 12 8 (40) 4 (20)

disease. Although there were sigrulicant but modest
differences between treatment and control subjects in
age and SES, there were no differencesfound initially in
our primary dependent variables, the HSFCI and CDR
scores. Both groups had similar pretreatment knowl-
edge of community resources, a variable potentially in-
fluenced by SES. Both groups also had a similar degree
of physical disorders, suggesting no bias from this po-
tentially confounding variable.
Our findings suggested that the education program
was beneficial in assisting spouses to feel greater com-
petence in the face of the disease process and to function

TABLE 2. HEALTH SPECIFIC FAMILY COPING INDEX

Intervention Group (n = 20) Control Group (n = 20)
Mean Score (+SD) Mean Score (+SD)
Domain Pre-Treatment Post-Treatment Change T i e1 Time 2 Change

Physical Independence 3.65 (.58) 3.85 (.59) +.20 3.20 (.52) 3.20 (.52) 0.00
Therapeutic Competence 3.45 (.68) 3.85 (.81) + .40 3.20 (.69) 3.25 (.72) +.05
Knowledge 3.20 (.61) 3.75 (.85) +.55 3.05 (.68) 3.10 (.72) +.05
General Hygiene 3.70 (.57) 3.75 (.64) + .05 3.55 (.51) 3.55 (.51) 0.00
Health Attitudes 3.30 (.80) 3.70 (.57) +.40 3.30 (.80) 3.45 (.61) +.15
Emotional Competence 3.60 (.82) 3.90 (.79) + .30 3.45 (.51) 3.45 (.51) 0.00
Family Living 3.45 (.75) 3.55 (.69) +.lo 3.05 (.75) 3.10 (.79) +.05
Physical Environment 3.50 (.82) 3.50 (33) 0.00 3.40 (.59) 3.40 (.60) 0.00
Community Resources 2.75 (.96) 2.95 (1.00) + 20 2.70 (.80) 2.65 (.81) -.05

Total Coping Score: 30.60 (4.39) 32.80 (4.47) +2.20 28.90 (3.19) 29.15 (3.24) +.25
IAGS-IULY 1989-VOL. 37, NO. 7
with greater independence. In the treatment group, the
greatest increase was in the Knowledge domain. In our
discussion session following the first education module
regarding disease process, spouses stressed how this in-
formation alerted them to the need for future planning.
Given the high education level of many participants in
this project and our sources of recruitment, we found
that most subjects demonstrated a prior awareness of
the basic signs, symptoms, and diagnosis of AD. Despite
this superficial knowledge, few had begun to deal with
the financial and legal issues likely to result from the
foreshadowed progression of the disease.
The increase noted in Therapeutic Competence was
apparently related to our module dealing with behav-
ioral management and activities of daily living. Spouses
were better equipped to carry out medical, dietary, and
other treatment recommendations. Emotional Compe-
tence increased as well. We suspect that this grew out of
the overall group process that occurred following all
three modules. The sharing of information and experi-
ences provided a supportive environment conducive to
self-expression and greater personal awareness. Many
spouses were apparently willing to discuss topics they
had avoided previously.
Our intervention was not free of side effects. We
noted that among five study group members, an appar-
ently negative impact of the program was tied to ”tim-
ing,’’ an issue that we had not anticipated. Some partici-
pants became overwhelmed when too much in-
formation was presented during one session. Others
were not ready to hear what was being discussed. One
woman, in particular, became distressed with the infor-
mation and discussion that occurred in her education
group. Her husband had been diagnosed recently and
she had apparently not resolved her own feelings re-
garding his diagnosis. In contrast, most participants in
her group were preoccupied with the daily rigors of
caring for their spouse. The timing of educational inter-
ventions has been considered briefly by Chenoweth and
Spencer“j but requires further, more rigorous, investi-
gation. Attention to matching the needs, sophistication,
and adjustment of potential members is critical to re-
ducing untoward effects. For example, some groups
with more homogeneous composition might strive to
educate uninformed “initiates” while others might seek
to mix intentionally more and less experienced spouses
for long-term psychosocial support. Programs spon-
sored by the Rochester ADRDA suggest that side effects
are lessened when problem-oriented solutions are
shared between spouses of different disease longevity.
However, this approach follows an initial stint for all in
a “beginners’ group.”
Many of the participating spouses indicated an
awareness of available community resources but did not
utilize them. Lack of transportation, limited service
hours, and resistant behavior by the AD patient were all
EDUCATION IN COPING FOR SPOUSES 597
cited as obstacles. Another obstructing factor was the
commonly expressed belief that no one could care for
the spouse as well as they. Many indicated that prohibi-
tive costs prevented them from using available services.
It was not sufficient that caregivers knew about valuable
community services if they could not pay for them.
We found no overall relationship between gender of
the spouse and coping ability. However, there may have
been qualitative differences. Many women described
problems managing their husbands’ assaultive behav-
iors; these were not often reported by the men. Addi-
tionally, our male participants utilized community re-
sources more often than their female counterparts. This
may have reflected a willingness of the men to seek help
with caregiving and the sense of the women that they
should provide the care themselves. Perhaps these men
were also more familiar and comfortable coordinating
services as a result of their previous work experience
(especially for the generation group studied).
The results of this pilot project clearly demonstrate
the need for further study, especially in the areas of
premorbid caregiver characteristics. Our findings su-
gest, in a tentative fashion, that education can assist in
the short-term development of a sense of competence
and of self-confidence in the face of an incurable pro-
gressive illness. Thus far, we have yet to discern
whether these effects are lasting. Nor have we learned
whether a brief education program can prevent “prema-
ture institutionalization.” We are now following our
small cohort to observe whether any trends become evi-
dent. Larger studies are warranted.
No cure is presently available for Alzhiemer’s disease.
However, a disorder which destroys a person in the
fashion of AD affects patient, spouse, and family. It cuts
widely and deeply. Our therapeutic obligation involves
both patient and family. This initial investigation sug-
gests that a brief, low cost intervention has a rapidly
discernible benefit for patients’ spouses, providing them
with tools to bolster themselves. We are hopeful that by
assisting the AD spouse, we may also benefit the pa-
tient.
ACKNOWLEDGMENTS
The authors thank Donna Mueller, RN, BS, who assisted with
data collection and Nora Tabone, RN, MS, who taught educa-
tional classes. Christopher Cox, PhD, and Heather Booth, MS,
advised regarding data analysis, and Janet Werkheiser and
Cindy O’Keefe prepared the manuscript.
REFERENCES
Lazarus R, Folkman S: Coping and adaptation, in Gentry
WD (ed): Handbook of Behavioral Medicine. New York,
Guilford Press, 1984, pp 282-325
Aronson M, Lipkowitz R: Senile dementia, Alzheimer‘s
type: the family and health care delivery system. J Am
Geriatr SOC29:568-571,1981
Brody S, Poulshock W, Masaocchi C : The family caring
598 CHIVERTON A N D CAINE
unit: a major consideration in the long-term care support
system. Gerontologist 18:556-561, 1978
4. Busse E, Blazer, D: Handbook of Geriatric Psychiatry.
New York, Van Nostrand Reinhold, 1980
5. Eisdorfer C, Cohen D: Management of the patient and
family coping with dementing illness. J Fam Pract
12831, 1981
6. Hayter J: Helping families of patients with Alzheimer’s
disease. J Gerontol Nurs 8:81-86, 1982
7. Johnson J, Loventhal H: Effects of accurate expectations
and behavioral instructions on reactions during a nox-
ious medical examination. J Pers SOCPsycol29:710- 718,
1974
8. Johnson J, Rice V, Fuller S, et al: Sensory information,15.
instruction in a coping strategy, and recovery from sur-
gery. Research in Nursing and Health 1:4-17, 1978
9. McHugh N, Christman N, Johnson L Preparatory infor- 16.
mation: what helps and why. Am J Nurs 5:780-782,
1982
JAGS-JULY 1989-VOL. 37, NO. 7
10. Safford F: A program for families of the mentally im-
paired elderly. Gerontologist 20:656- 660,1980
11. Zarit S, Zarit J: Families under stress: interventions for
caregivers of senile dementia patients. Psychother
Theory Res Pract 19:461-471, 1982
12. Lipkin LV, Faule KJ: Dementia: educating the caregiver.J
Gerontol 13:23,1987
13. Gray VK: Providing support for home care, in Smyer M,
Gatz M (eds): Mental Health and Aging. Beverly Hills,
CA, Sage, 1983,pp 197-214
14. Choi T, LaVohn J, Christensen M: Health specific family
coping index for noninstitutional care. Am J Public
Health 73:1275-1277,1983
Hughes CP, Berg L, Danziger WL, et al: A new clinical
scale for the staging of dementia. Br J Psycho1 140:566-
572, 1982
Chenoweth B, Spencer B: Dementia: the experience of
family caregivers. Gerontologist 26967, 1986