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Emotional and physical health of spousecaregivers of persons with Alzheimer'sdisease and stroke
Lore K. Wright PhD RN CS
Professor and Chair, Department of Mental Health-Psychiatric Nursing,
School of Nursing, Medical College of Georgia, Augusta, Georgia
Joanne V. Hickey PhD RN CS FAAN
Professor, School of Nursing, University of Texas-Houston, Houston, Texas
Kathleen C. Buckwalter PhD RN FAAN
Professor, College of Nursing and Associate Provost for Health Sciences,
University of Iowa, Iowa City, Iowa
Shirley A. Hendrix MSN RN
Clinical Nurse Specialist, College of Nursing, Medical University
of South Carolina, Charleston, South Carolina
and Teresa Kelechi MSN RN
Clinical Nurse Specialist, Center for the Study of Aging,
Medical University of South Carolina, Charleston, South Cardina, USA
Accepted for publication 4 November 1998
WRIGHT K.L.,WRIGHT K.L., HICKEYHICKEY J.V.,J.V., BUCKWALTERBUCKWALTER K.C.,K.C., HENDRIXHENDRIX S.A. &S.A. & KELECHIKELECHI T. (1999)T. (1999)
Journal of Advanced Nursing 30(3), 552±563
Emotional and physical health of spouse caregivers of persons
with Alzheimer's disease and stroke
Providing care for a cognitively impaired spouse can adversely affect caregivers'
health. It is not known how early in the caregiver's `career' emotional and
physical health deteriorates. The progressive deterioration associated with
Alzheimer's disease (AD) may have different effects on caregivers' health when
compared with the potential recovery following a stroke. An exploratory study
was conducted with 42 couples, equally divided among early phase AD,
ischaemic stroke after hospital discharge, and well controls. Couples were
evaluated at baseline (time 1), 6 months (time 2) and 1 year (time 3). At time 1,
depression was signi®cantly higher in AD and stroke caregivers when compared
to controls. Over time, depression increased signi®cantly for AD caregivers with
21% evidencing moderate to severe depression at time 1 and 50% at time 3. For
stroke caregivers there was a signi®cant interaction effect with race: white stroke
caregivers' depression increased over time while African American stroke
caregivers' depression decreased. Physical health was not signi®cantly different
for the three groups and remained stable over time. Cognitive and functional
impairment levels of care recipients were signi®cantly related to stroke
Correspondence: Dr Lore K. Wright, School of Nursing, EB-100,
Medical College of Georgia, Augusta, Georgia, 30912-4220.
Journal of Advanced Nursing, 1999, 30(3), 552±563 Issues and innovations in nursing practice
552 Ó 1999 Blackwell Science Ltd
caregivers' but not AD caregivers' depression. Long-term counselling and
support to family caregivers is advocated.
Keywords: Alzheimer's disease, dementia, stroke, caregiving, carer, spouses,
depression, health, illness trajectory, longitudinal
INTRODUCTION
Providing care for a cognitively and functionally impaired
spouse can adversely affect the caregiver's emotional and
physical health (Wright et al. 1993, Schulz et al. 1995,
Carers National Association 1997). Few researchers,
however, have documented how early in the caregiver's
`career' negative health consequences occur, and whether
emotional and physical health continues to decline over
time, as well as whether caregiving responsibilities asso-
ciated with different illnesses have similar or different
effects on caregivers' health (Schulz & Williamson 1991,
Pearlin 1992). This longitudinal study was designed to
explore the course of caregivers' emotional and physical
health at the beginning and along two divergent illness
trajectories: Alzheimer's disease (AD) and stroke.
Many behavioural disturbances in AD and stroke
victims are similar, but caregiving responsibilities along
these two trajectories diverge. AD is characterized by
irreversible, progressive cognitive and functional decline
leading to loss of mutual give and take between spouses
and increasing caregiver responsibilities over time. A
stroke, by contrast, results in sudden cognitive and
functional disabilities, but unlike persons af¯icted with
AD, 50±75% of stroke victims can recover to some degree,
and most of the recovery tends to occur during the ®rst 6
months following an acute stroke (Gresham et al. 1995,
Hickey 1997). This recovery is likely to result in regaining
reciprocal exchanges between spouses and decreased
caregiving responsibilities over time (Wright et al. 1995).
The focus of this study was on loss experienced by
caregivers whose spouses were af¯icted with AD or who
had suffered a stroke (for ease of reference, the terms AD
caregivers and stroke caregivers will be used throughout
this paper). A spouse's diagnosis of AD or stroke leads to
losses such as no longer being able to count on the
partner's help or mutual give and take in daily interac-
tions. This loss is different from grief associated with the
death of a spouse because a cognitively impaired spouse's
dependency needs can extend over many years and
increase or ¯uctuate over time. Although many caregiving
responses have been documented, reactions of interest in
this study were dysphoric moods which may escalate to
depression and over time affect physical health (Kiecolt-
Glaser et al. 1991). With AD caregiving, loss continues,
and caregivers' emotional health can be expected to
decline over time. With stroke caregiving, loss may abate,
and improvement in caregivers' emotional health can be
expected. Given the focus on early phases of the
caregiver's career in this study, negative physical health
consequences for caregivers were not expected to be
evident; they are more likely to occur at later points in
the caregiver's career.
Previous studies
To date, simultaneous comparisons of AD and stroke
caregivers have been reported in only two studies, and in
these studies the early phase of each illness was not
targeted (Draper et al. 1992, Reese et al. 1994). In both
studies, there were no signi®cant differences between AD
and stroke caregivers in emotional health (psychological
morbidity or depression). However, the Reese et al. (1994)
study included a non-caregiver control group, and signif-
icantly higher depression scores in both caregiver groups
were found compared to the control group. Physical
health indicators (a questionnaire in the Draper et al.
study and immunological measures in the Reese et al.
study) showed no differences between AD and stroke
caregivers or controls. For rates of illness, 46% of care-
givers reported signi®cant psychiatric morbidity, and 45%
rated their physical health as fair or poor in the Draper
et al. (1992) study. Reese et al. (1994) did not report how
many caregivers were depressed or rated their health as
fair or poor.
The majority of studies focusing exclusively on either
AD or stroke caregivers' emotional and physical health
have been cross-sectional. For dementia caregivers,
reported rates of depression varied with type of sample
selection: 25% among randomly selected caregivers from
a central Alzheimer's disease registry (Neundorfer 1991);
36% among non-help-seeking caregivers versus 68%
among self-referred, help-seeking caregivers (Gallagher
et al. 1989); and 70% among caregivers with a previous
history of depression (Russo et al. 1995). Among stroke
caregivers, reported rates of depression have been
slightly lower, ranging from 11% to 37% (Wade et al.
1986, Schulz et al. 1988, Matson 1994). However, in a
later study, 42% of stroke caregivers had high depres-
sion scores 1 year post-infarct (Anderson et al. 1995).
Both stroke and dementia caregivers' rates of depression
are higher than the 2±4% of major depression observed
in the general populations of older adults (Gurland
1991).
Racial differences in depression among caregivers are
not well researched. Though limited, available studies
Issues and innovations in nursing practice AD stroke caregiver health
Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563 553
suggest lower rates among African American than white
caregivers (Haley et al. 1995, Miller et al. 1995). It is not
known whether African American caregivers' depression
varies at different phases of the AD and stroke illness
trajectories.
Reports of caregivers' physical health show a wide range
(Stone et al. 1987, Wright et al. 1993). Based on United
States (US) national data, 44% of spouse caregivers above
age 65 perceived their health as poor in contrast to 30% of
same-aged peers in the US population (Stone et al. 1987).
In several studies, caregivers attributed a decline in health
to caregiving responsibilities. Black and Asian caregivers
and older women were more likely to report health
problems as a result of caregiving than white caregivers
and men (Silliman et al. 1986, Young & Kahana 1989,
Anderson et al. 1995, CNA 1997, National Alliance for
caregiving & American Association of Retired Persons
1997).
The progression from depression to declining physical
health was documented by Pruchno et al. (1990). The
researchers tested a causal structural model with 200
Alzheimer's disease spouse caregivers and found that for
female spouse caregivers, baseline depression predicted
physical health decline at 6 months follow-up, depression
at 6 months predicted decreased physical health at 12
months, but at no time was physical health a predictor of
depression.
In all of the studies quoted above, the care recipients'
cognitive and functional impairments Ð and hence
responsibilities of the caregiver Ð varied widely. A link
between problem behaviours in care recipients and poor
health status in caregivers has been reported in many
cross-sectional studies, but levels of cognitive impair-
ment, functional disabilities and length of time in the
caregiving role have not shown consistent correlations
with emotional and physical health in dementia or stroke
caregivers (Schulz et al. 1995). Results from longitudinal
studies are also con¯icting. Though tested, no changes in
dementia and stroke caregivers' emotional and/or physical
health have been reported by some researchers (Schulz
et al. 1990, Schulz & Williamson 1991, Wright 1994,
Archbold et al. 1995, Neundorfer et al. 1995), while others
observed improvement or decline depending on the care
recipients' stable or decreasing level of cognitive func-
tioning (Carnwath & Johnson 1987, Deimling 1991).
Length of time used to observe change in caregivers'
emotional and/or physical health ranged from 3 months to
2 years in these reports.
This study is unique in that the course of caregivers'
emotional and physical health at an early point of two
potentially divergent trajectories was explored. In
addition, caregivers' emotional and physical health was
contrasted with ®ndings from matched community
controls in order to examine more clearly the impact of a
spouse's illness. Based on conceptualizations of loss
associated with a spouse's early AD or post-ischaemic
stroke, divergent illness trajectories, and empirical
®ndings by Draper et al. (1992) and Reese et al. (1994),
the following hypotheses were posed:
· At baseline (time 1), depression is higher in AD and
stroke caregivers than community controls; however,
there is no difference in physical health for the three
groups.
· At 6 months (time 2) and 12 months (time 3), depres-
sion increases in AD caregivers and decreases in stroke
caregivers; physical health remains stable over time for
the three groups.
· At times 1, 2 and 3, illness characteristics of AD and
stroke care recipients (i.e. cognitive and functional
impairments) are related to caregivers' depression;
given the early phases of caregiving investigated in
this study, care recipients' illness characteristics have
no relationship to caregivers' physical health.
METHOD
Design and sample
This descriptive comparative study was longitudinal.
Face-to-face interviews were conducted in the couples'
homes or other agreed upon location at baseline (time 1)
and 6 months later (time 2). A follow-up phone interview
was conducted at 1 year (time 3).
A sample size of n� 42 couples (or 84 spouses) was
divided equally between three groups of couples: 14
couples (28 spouses) in the AD group, 14 couples (28
spouses) in the stroke group, and 14 well couples (28
spouses) representing community controls without care-
giving responsibilities.
A convenience sample of AD af¯icted spouses was
recruited from a university medical centre in the south-
eastern region of the United States where subjects had
undergone outpatient diagnostic work-ups and were
classi®ed as early phase probable Alzheimer's disease.
Cases with vascular dementia were excluded. The ®xed
interviews at entry into the study, baseline (time 1) data,
yielded a mean Mini Mental Status Examination
(MMSE) score of 21/30 (range 16 to 26) for AD af¯icted
spouses.
Mean age of AD caregivers was 67 (range 49±82); their
mean length of marriage was 39 years (range 6±57), mean
educational level 1 to 3 years of college (range middle
school to postgraduate), and mean incomes $2548 per
month (range $800 to P$3800). Seven AD caregivers were
male, seven female; two of the AD couples were black, and
all others were white.
Stroke victims were recruited sequentially from a
university medical centre which specialized in acute
stroke care. This medical centre was located in a different
L.K. Wright et al.
554 Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563
city and state than the one used for AD subject recruit-
ment, but both centres were in the south-eastern region of
the United States. All subjects meeting study criteria and
willing to participate were entered into the study follow-
ing discharge from the hospital where they had received
treatment for an acute ischaemic stroke. Cases with speech
disabilities were excluded because of the anticipated
confounding effect on caregiving responsibilities. Baseline
(time 1) interviews, conducted approximately 3 months
after the stroke, yielded a mean MMSE score of 23/30
(range 12 to 30) for stroke victims.
Mean age of stroke caregivers was 64 (range 50±85);
their mean length of marriage was 35 years (range 9±52),
mean educational level high school (range elementary
school to undergraduate college completed), and mean
income over $1548 per month (range <$800 to P$3800).
Four stroke caregivers were male, 10 female; six couples in
this group were black and eight were white. Compared to
the AD group, the percentage of black couples was higher
in the stroke group.
`Well' control group spouses were recruited from age
strati®ed lists of various community organizations and
churches. Half of the control group subjects were recruited
within the geographical vicinity from which AD subjects
had been selected and half from the geographical vicinity
of stroke subjects. There were no signi®cant differences
among control group subjects based on recruitment loca-
tion. Both spouses of well (control group) couples were
interviewed, but to preserve independence of sample
selection when comparing them with AD and stroke
caregivers, data from only one spouse per well couple
were used. Well spouses were randomly selected, and in
the same male/female proportion as found in the caregiver
groups (61% female, 39% male). Table 1 lists information
on randomly selected as well as the total sample of well
spouses. Well controls were matched to AD and stroke
caregivers by age and length of marriage. In addition, well
spouses and AD caregivers were matched by education
and income. However, well spouses and stroke caregivers
were not well matched on education (P < 0á01) or income
(P < 0á01).
All subjects in the AD group completed the study, but
sample attrition between time 1 and time 2 was 50%
among stroke caregivers, and 21% among well controls.
There was no further attrition between times 2 and 3. The
researchers' inability to recontact subjects at time 2 was
due to the following: no phone and no response to
repeated written requests for an interview; not being at
home despite a pre-arranged interview time; moving
without leaving a forwarding address; and re-hospitalization
Table 1 Sample characteristics at time 1
AD
caregivers
(n = 14)
Stroke
caregivers
(n = 14)
Well spouses
(n = 14) AD care
recipients
(n = 14)
Stroke care
recipients
(n = 14)Ra (n = 14) Male (n = 14) Female (n = 14)
M (Range) M (Range) M (Range) M (Range) M (Range) M (Range) M (Range)
Age (years) 67á2 (49±82) 63á9 (50±85) 63á9 (49±81) 64á4 (49±81) 64á0 (49±87) 67á9 (50±84) 66á1 (56±78)
Educationb 6á0 (2±8) 3á5*(1±7) 5á1 (2±8) 6á1 (2±8) 5á3 (2±8) 5á4 (1±8) 3á1*(1±8)
Income/$Monthc 5á4 (2±8) 3á0*(1±8) 5á9 (2±8) 5á9 (2±8) 5á9 (2±8) 5á4 (2±8) 3á0*(1±8)
Years married 38á5 (6±57) 34á5 (9±52) 35á4 (1±52) 35á4 (1±52) 35á4 (1±52) 38á5 (6±57) 34á5 (9±52)
MMSE 21á3 (16±26) 22á6 (12±30)
AD symptom/months 33á9 (12±77)
Post-stroke/days 88á4 (58±121)
Gender (n) % (n) % (n) % (n) % (n) % (n) % (n) %
Female (7) 50 (10) 71 (9) 61 (14) 50 (14) 50 (7) 50 (4) 29
Male (7) 50 (4) 29 (5) 39 (14) 50 (14) 50 (7) 50 (10) 71
Ethnic background
White (12) 86 (8) 57 (12) 86 (12) 86 (12) 86 (12) 86 (8) 57
Black (2) 14 (6) 43 (2) 14 (2) 14 (2) 14 (2) 14 (6) 43
a Only one spouse per couple, randomly selected in same male/female proportion as caregivers.b Education based on OARS index: 1 = 0±4 years; 2 = 5±8 years; 3 = high school incomplete; 4 = high school complete; 5 = post school;
6 = 1±3 years college; 7 = 4 years college complete; 8 = postgraduate college.c Income based on the OARS index: 1 = <$800; 2 = $800±1299; 3 = $1300±1799; 4 = $1800±2299; 5 = $2300±2799; 6 = $2800±3299;
7 = $3300±3799; 8 =�$3800.
*P < 0á01.
Sample attrition at time 2 and time 3 did not signi®cantly change demographic characteristics.
Issues and innovations in nursing practice AD stroke caregiver health
Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563 555
of one stroke victim. There were no signi®cant statistical
differences between demographic characteristics of the full
sample and those who remained in the study.
Variables and instrumentation
Caregiver variablesCaregiver variables of interest in this study were depres-
sion, physical health, and background characteristics.
Depression represented reaction to loss and was measured
with the Short Zung Interviewer Assisted Depression
Scale (Tucker et al. 1986, 1987). This scale correlates
signi®cantly with other depression scales and has been
found to be a useful screening test for depression in
elderly patients in whom the diagnosis of depression was
con®rmed with a psychiatric interview (Tucker et al.
1986, 1987). The 10-item scale assesses depressed moods
over the past 2 weeks or longer with response options
ranging from 1� seldom or never to 4�most of the time.
Items are summed, divided by 40 and multiplied by 100 to
create a `Zung Index' (Zung 1973). Scores of <50 are
interpreted as no depression; 50±59 as mild depression,
which corresponds to the concept of dysphoria that is
of special interest in this study; 60±69 as moderate to
marked depression; and scores ³70 as severe depression.
The internal reliability coef®cient, Cronbach's alpha, for
the present sample was 0á79.
Physical health was measured with the short form of the
Multilevel Assessment Inventory (MAI) developed by
Lawton et al. (1982), who reported that the MAI correlates
signi®cantly with other physical health scales. This sum-
mated scale has a range of 27� excellent health to 8�poor
health. Items included: self-rated health; whether health
problems stop desired activities; absence or presence of
heart of circulatory problems; number of doctor visits and
days of hospitalization during the past year; and number
of medications taken per day. Cronbach's alpha for the
present sample was 0á77. All questions were administered
at times 1 and 2. At time 3, only self-rated health was
obtained. Self-rated health is considered a reliable,
racially unbiased indicator of objective health measures
(Liang 1986, Gibson 1991).
Background characteristics included age, education,
income, years married, gender and ethnic background.
These variables were assessed according to the OARS
questionnaire (Fillenbaum 1988). Length of time in the
caregiver role or since the onset of the spouse's illness also
was assessed.
Care recipient variablesCare recipient variables pertaining to illness characteris-
tics were cognitive status (MMSE) and functional impair-
ments related to activities of daily living (ADL) and
instrumental activities of daily living (IADL). The MMSE
is a widely used scale with good psychometric properties
(Folstein et al. 1975). A maximum score of 30 indicates
perfect memory; cut-off points for memory impairment are
24±21 depending on educational level (Anthony et al.
1982). ADL and IADL were based on the Older American
Resources and Services (OARS) questionnaire developed
by Fillenbaum (1988). Answers obtained from each care
recipient were validated by the caregiver. ADL and IADL
are widely used measures in caregiver research because
they provide indications of the ill person's dependency
needs. ADL consists of seven activities including feeding,
dressing, grooming, walking, and bathing; response
options are scaled from 0� totally dependent to 2�without help. Scores are summed yielding a possible
range of 0±14 (Fillenbaum 1988). IADL consists of seven
activities including telephoning, shopping and preparing
a meal; response options are scaled from 0� completely
unable to 2�without help. Scores are summed, yielding a
possible range of 0±14 (Fillenbaum 1988). Internal reli-
ability coef®cients for the present sample were alpha 0á89
for ADL and 0á85 for IADL.
In addition to care recipients' cognitive and functional
status, their physical health was assessed with the MAI
described above. Care recipients' answers were validated
by caregivers. Level of depression in care recipients was
assessed with the Short Zung scale described above. Care
recipients' answers were considered valid and reliable
even for those with a MMSE score of 12. This assumption
is based on previous research where subjects with mild or
moderate cognitive impairment accurately identi®ed and
named feelings (Wright 1993).
Procedures
All interviews were conducted by master's prepared
nurses who had been trained by the senior investigators.
At time 1 and 2, each couple was interviewed together for
demographic, cognitive and functional abilities, and
physical health information. (Interviews assessing depres-
sion, however, were conducted in separate rooms.) All
spouses, including AD af¯icted and stroke victims, signed
an informed consent prior to the ®rst interview. At times 1
and 2, each spouse received $20 ($40 per couple) for
participating in the study. At time 3, only caregivers and
well spouses (both husbands and wives) from the control
group participated. They were interviewed over the tele-
phone.
Statistical analysis
Descriptive statistics (mean, SDSD, percentages) were calcu-
lated as appropriate. The dependent variables depression,
MAI, and describe your health had approximately normal
distributions (skewness 0á734, )0á648, )0á594 and kurtosis
)0á083, )0á588, 0á098 respectively), supporting the use of
L.K. Wright et al.
556 Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563
analysis of variance (ANOVAANOVA) which is considered robust
even with small sample sizes (Munro 1997). To analyse
baseline group differences for depression and physical
health, one factor ANOVAANOVA and post-hoc t-tests with
Bonferroni corrections for multiple comparisons was
used. To analyse change over time for depression and
physical health, ANOVAANOVA with repeated measures and
post-hoc t-tests with Bonferroni corrections for multiple
comparisons was used. Additional descriptive (%) and
non-parametric (Wilcoxon signed rank test) analyses were
performed to examine depression of caregivers who had
been classi®ed as severely, moderately, mildly, or not
depressed. Pearson correlation coef®cients were used to
examine relationships between care recipient characteris-
tics and caregiver health variables.
RESULTS
Differences in depression and physical healthat baseline
Hypothesis 1, predicting baseline depression to be higher
for AD and stroke caregivers than community controls but
no difference in physical health among all three groups,
was supported. Mean scores for depression in AD care-
givers, stroke caregivers and controls were signi®cantly
different (Table 2). Post-hoc comparisons among means
with Bonferroni correction con®rmed the two caregiver
groups to be signi®cantly higher in depression than
controls (P < 0á02). There were no signi®cant differences
in measures of physical health for the summated measure
of physical health (MAI) and for the single item `describe
your health' for AD caregivers, stroke caregivers and
controls. Random selection of controls did not in¯uence
the ®ndings. There were no signi®cant differences
between those selected/not selected, and there were no
signi®cant differences between male and female well
spouses for these variables.
Change over time in depressionand physical health
Hypothesis 2, predicting increased depression at times 2
and 3 for AD caregivers, decreased depression for stroke
caregivers, and physical health to remain stable for all
three groups, was supported for physical health only. As
shown in Table 3, physical health remained stable over
time for all three groups, and there was no signi®cant
main effect. Depression scores of AD caregivers were
signi®cantly higher than for controls at all three times
(P < 0á02), but there was no signi®cant change over time
and no signi®cant interaction effect, indicating that stroke
caregivers did not signi®cantly decline in depression as
hypothesized. The high attrition rate among stroke care-
givers does not seem to have in¯uenced these ®ndings
since there were no signi®cant differences in baseline
levels of depression between drop-outs and subjects who
remained in the study (P < 0á22). Random selection of
controls did not in¯uence the ®ndings. There was no
signi®cant change over time for those selected/not select-
ed, and male and female well spouses did not change
signi®cantly over time in depression and health.
Given the exploratory nature of this study and the fact
that mean depression scores obscure the number of
subjects who can be classi®ed as having severe, moderate,
mild (dysphoria) or no depression, additional analyses
were conducted to examine possible differences between
groups. Table 4 provides a breakdown of the percentage of
AD and stroke caregivers and randomly selected controls
whose depression scores at time, 1, 2 and 3 were classi®ed
according to established criteria of the Zung Index.
Table 5 compares scores from all control group spouses.
As shown in Table 4, severe and moderate depression
was absent among randomly selected controls. For AD and
stroke caregivers, severe depression was reported by a
small percentage of AD caregivers at all three times and by
stroke caregivers at time 3 only. Moderate depression
Table 2 Baseline (time 1) values of depression and physical health for AD and stroke spouse caregivers and well spouses
Group I Group II Group III
AD caregivers Stroke caregivers Well spousesa 1 Factor ANOVAANOVA
(n = 14) (n = 14) (n = 14) F (2,39) P
Short Zung Depression Index M (SDSD) M (SDSD) M (SDSD)
(possible range 25±100) 45á55 (14á75)* 45á54 (13á16)* 33á75 (7á95) 4á289 <0á02
Physical health Ð MAI
(possible range 8±27) 22á36 (3á39) 22á21 (3á33) 22á79 (3á58) 0á105 >0á02
Describe health
(possible range 1±4) 3á14 (0á66) 2á64 (0á84) 3á21 (0á58) 2á744 >0á02
a Only one spouse per couple, randomly selected in same male/female proportion as caregivers. Male and female well spouses did not
differ signi®cantly on variables shown.
*P < 0á02 post-hoc, with Bonferroni correction for multiple comparisons, I, II > III.
Issues and innovations in nursing practice AD stroke caregiver health
Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563 557
showed a steady increase among AD caregivers but a
steady decrease for stroke caregivers even when only those
stroke caregivers who remained in the study are used for
comparison. Over the period of 1 year, the combined
percentage of moderate and severe depression increased
from 21% (n� 3) to 50% (n� 7) among AD caregivers
(P� 0á05). The category mild depression, synonymous
with dysphoria, showed a shift to higher depression levels
among AD but not stroke caregivers.
Table 5, which compares all well husbands and wives
from the control group, shows that two female well
spouses (18%) were mildly depressed at times 1 and 2,
while at time 3, one female (9%) and one male (9%) well
spouse were mildly depressed. Only one female well
Table 3 Changes in depression and physical health for AD and stroke spouse caregivers and well spouses at times 1, 2, and 3
Group I Group II Group III ANOVAANOVA repeated
AD caregivers Stroke caregivers Well spousesa measuresb
(n = 14) (n = 7) (n = 11)
Time 1 Time 2 Time 3 Time 1 Time 2 Time 3 Time 1 Time 2 Time 3
M M M M M M M M M
(SDSD) (SDSD) (SDSD) (SDSD) (SDSD) (SDSD) (SDSD) (SDSD) (SDSD) F(2,29) P
Short Zung 45á55* 48á77* 52á14* 41á07 39á29 41á43 35á00 32á73 34á0 A) 4á697 <0á02
Depression
index
(14á75) (17á81) (18á32) (14á64) (13á21) (14á99) (8á29) (3á62) (6á73) B) 1á144 >0á02
AB) 0á888 >0á02
Physical health 22á36 22á00 ± 23á00 21á86 ± 22á82 22á36 ± A) 0á043 >0á02
(MAI) (3á39) (3á98) (3á65) (5á15) (3á37) (3á85) B) 1á101 >0á02
AB) 0á167 >0á02
Describe health 3á14 3á21 2á93 3á00 2á71 3á14 3á36 3á00 3á09 A) 0á179 >0á02
(0á66) (0á70) (0á92) (0á82) (1á11) (0á69) (0á51) (1á00) (0á70) B) 1á199 >0á02
AB) 1á788 >0á02
a Only one spouse per couple, randomly selected in same male/female proportion as caregivers. Separate analyses of the total sample of
male and female well spouses no signi®cant changes over time for variables shown.b ANOVAANOVA repeated measures: A = group effect; B = time effect; AB = group ´ time.
* P < 0á02 post-hoc, with Bonferroni correction for multiple comparisons, I > III.
Table 4 Percentage of spouses evidencing mild, moderate or severe depression at baseline (T1), 6 months (T2), and 12 Months (T3)
AD caregiver
spouses
Stroke caregiver
spouses
Wella
spouses
T1 T2 T3 [T1] T1 T2 T3 [T1] T1 T2 T3
Level of depression (n = 14) (n = 14) (n = 14) [n = 14] (n = 7) (n = 7) (n = 7) [n = 14] (n = 11) (n = 11) (n = 11)
(Short Zung Index) % % % [%] % % % [%] % % %
Severe depression
(³70)
7 7b 7 [0] 0 0 14 [0] 0 0 0
Moderate depression
(60±69)
14 22c 43 [22] 29 14 0 [0] 0 0 0
Mild depression
(50±59)
22c 29d 7 [22] 0 0 0 [7c] 0 0 0
Not depressed
(<50)
57 42c 43 [56] 71 86 86 [93] 100 100 100
Total 100 100 100 [100] 100 100 100 [100] 100 100 100
[ ] Baseline (T1) sample before drop-outs.a Only one spouse per couple, randomly selected in same male/female proportion as caregivers.b one subject on anti-anxiety medication; c one subject on antidepressant medication; d two subjects on antidepressant medication.
L.K. Wright et al.
558 Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563
spouse (9%) could be classi®ed as moderately depressed
(time 3), and at no time did well spouses evidence severe
depression. The majority were not depressed. As previ-
ously noted, depression did not change signi®cantly over
time for well group spouses, even though a slight
difference in pattern can be noted when comparing all
husbands and wives from the well group instead of
randomly selected spouses used for comparisons with
AD and stroke caregivers.
The pattern observed in the `not depressed' category is
of clinical relevance: over time, fewer AD caregivers were
asymptomatic but more stroke caregivers became asymp-
tomatic. This occurred despite the fact that 29% of AD
caregivers but no stroke caregivers were receiving anti-
depressant medication.
An additional analysis focused on possible racial dif-
ferences in depression because 43% of stroke caregivers in
this study were African American, and previous research
by Haley et al. (1995) and Miller et al. (1995) had docu-
mented racial differences in caregiver depression. (Among
AD caregivers and controls, only two subjects per group
were black; therefore, no additional analyses were
conducted for these sub-groups.) Figure 1 shows levels
of depression for all three groups without racial contrasts
(for subjects who remained in the study). The previously
discussed lower levels of depression for stroke versus AD
caregivers can be seen. Figure 2 shows racial comparisons
for only the stroke group and only for those stroke
caregivers who had remained in the study. A signi®cant
interaction effect (P < 0á05) became evident. Black stroke
caregivers reported higher depression at baseline (time 1)
but lower depression by time 2 and then remained stable.
White stroke caregivers, by contrast, were lower in
depression than black stroke caregivers at baseline but
then showed a steady increase in depression. By time 3,
their level of depression approaches that of AD caregivers.
Whether these observed differences in depression could
be confounded with socio-economic status was examined.
At time 1, education was found to be related to stroke
caregivers' depression (r�)0á54, P < 0á05), but income
did not reach signi®cance. By times 2 and 3, education
and income showed no signi®cant relationship with
depression. (Among AD caregivers, neither education
nor income were related to depression.)
Care recipients' illness characteristics andcaregivers' depression and physical health
Hypothesis 3, predicting signi®cant relationships between
care recipients' illness characteristics and caregivers'
depression but no relationships to caregivers' physical
health, was only partially supported. At time 1, the care
recipients' lower MMSE and IADL scores (indicating a
higher level of functional impairment) were related to
Table 5 Comparing both spouses from the well group at time 1 [T1], total sample and after drop-outs (T1, T2, T3)
[T1]
[n = 14]
T1
n = 11
T2
n = 11
T3
n = 1
%
Male
%
Female
%
Male
%
Female
%
Male
%
Female
%
Male
%
Female
Severe depression (³70) [0] [0] 0 0 0 0 0 0
Moderate depression (60±69) [0] [0] 0 0 0 0 0 9
Mild depression (50±59) [0] [14a] 0 18a 0 18 9 9
Not depressed (<50) [100] [86] 100 82 100 82 91 82
Total 100 100 100 100 100 100 100 100
[ ] Baseline (T1) sample before drop-outs.a One female spouse on antidepressant medication.
Figure 1 Changes in depression between AD and stroke careg-
ivers. d, AD caregivers (n = 14); j, stroke caregivers (n = 7);
m, controls (n = 11).
Issues and innovations in nursing practice AD stroke caregiver health
Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563 559
stroke caregivers' depression (r�)0á63, P < 0á05 and
r�)0á52, P < 0á05 respectively). At time 2, care recipients'
lower ADL and IADL were related to stroke caregivers'
depression (r�)0á86, P < 0á01 and r�)0á90, P < 0á01
respectively). However, at time 3 there were no signi®cant
correlations between illness characteristics of care
recipients and stroke caregivers' depression. Furthermore,
no signi®cant correlations were found between AD care
recipients' illness characteristics and AD caregivers'
depression at times 1, 2 or 3.
Contrary to the hypothesis, some signi®cant relation-
ships between illness characteristics of care recipients and
AD and stroke caregivers' physical health were found. At
time 1, higher ADL and higher IADL levels (indicating less
functional impairment) and less depression in ill spouses
were related to higher levels of stroke caregivers' physical
health (r�)0á52, P < 0á05 and r�)0á53, P < 0á05 and
r�)0á65, P < 0á01 respectively). At time 2, ADL and IADL
levels in ill spouses correlated positively with AD care-
givers' physical health (r�)0á69, P < 0á01 and r�)0á55,
P < 0á05 respectively). There were no signi®cant relation-
ships at time 3.
DISCUSSION
The results of this longitudinal exploratory study begin to
shed light on changes in spouse caregivers' emotional and
physical health along two divergent illness trajectories. It
appears that AD and stroke caregiving have different
consequences, yet there are also similarities.
AD spouse caregivers experienced high levels of depres-
sion even in the early phase of the AD trajectory. This very
likely re¯ects the impact of a devastating diagnosis and
uncertainty about the future. Furthermore, rates of moder-
ate to severe depression among AD caregivers increased
from 21% (n� 3) at time 1 to 50% (n� 7) over the period of 1
year, even though 29% (n� 4) of AD caregivers reported
taking antidepressant medications. These ®ndings support
the initial conceptualization of loss experienced by spouse
caregivers along the progressively worsening AD trajectory.
In this study, AD caregivers experienced higher levels and
rates of depression than stroke caregivers, which is incon-
sistent with reports by Draper et al. (1992) and Reese et al.
(1994), who found no signi®cant differences in depression
between AD and stroke caregivers. However, in the Draper
et al. (1992) study, length of time in the caregiving role
ranged from < 1 to 10 years for dementia caregivers and from
< 1 to >31 years for stroke caregivers. In the Reese et al.
(1994) study, time since the spouses' diagnosis was close to
4 years for both groups of caregivers. Thus, possible early
effects on caregivers' depression were obscured.
Stroke caregivers' depression in this study appears to
follow a different pattern than that observed for AD care-
givers, although comparisons are complicated by the fact
that 50% of stroke caregivers could not be re-evaluated at
times 2 and 3. Statistically, there were no signi®cant
differences in level of depression between drop-outs and
those remaining in the study, but those with mild depres-
sion were lost at a higher rate than not depressed stroke
caregivers. When comparing only those stroke caregivers
who remained in the study, over time, their depression
appeared to abate. Rates of moderate to severe depression
decreased from 29% to 14% over the period of 1 year,
an no stroke caregiver reported taking antidepressant
medications. This seems to support the potential recovery
trajectory following a spouse's stroke and the regaining of
hope for a mutual give and take relationship.
However, Carnwath and Johnson (1987) reported that
the proportion of depressed spousal stroke caregivers
increased over time, rising from approximately 11% at 3
months post-stroke to 18% at 9 months and to 36% at
15 months, a time frame comparable to that of the
present study. On the other hand, ®ndings by Schulz
et al. (1988), are similar to those of the present study.
Beginning with 7 weeks post-stroke, 33% of stroke
caregivers in the Schulz et al. study were found to be
depressed, and although mean levels of depression did
not change signi®cantly over time, there was great
individual variation. Some stroke caregivers with initial
high levels of depression decreased to normal levels
over 6 months; others with initially low levels of
depression increased over time. This shifting of depres-
sion among individual stroke caregivers also can be
noted in the present study (Table 4): at time 3, one
stroke caregiver (14%) reached severe levels of depres-
sion, while others were no longer depressed.
In the Schulz et al. (1988) study, only 14% of stroke
caregivers were non-white subjects, and racial differences
Figure 2 Changes in depression over a period of 1 year for black
and white stroke caregivers. d, black stroke caregivers (n = 3); j,
white stroke caregivers (n = 4).
L.K. Wright et al.
560 Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563
in depression were not examined. Based on ®ndings in
this study, depression in African American stroke care-
givers may assume a different pattern. The intriguing
®ndings shown in Figure 2 need to be viewed as prelim-
inary because of the sample size. Studies with larger
samples where AD and stroke groups are matched by race
and socio-economic status, are needed. However, even
with this exploratory study, distinct differences between
AD and stroke caregivers' depression can be noted when
race is not considered (Figure 1). With racial contrasts,
available only for the stroke group, black stroke caregivers'
depression was higher at time 1, then decreased and
stabilized over time (Figure 2). White stroke caregivers'
depression, by contrast, continued to rise and by time 3
their level of depression was approaching that of AD
caregivers. This would suggest that race and ethnic
background contribute to stroke caregivers' adaptation
over time and may be more important than the care
recipient's illness characteristics.
Lower levels of depression among African American
versus white caregivers have been reported previously for
dementia caregivers (Haley et al. 1995, Miller et al. 1995).
Because this ®nding has implications for service provi-
sions, future studies with larger samples are needed to
permit testing the in¯uence of race and socio-economic
status using multivariate techniques.
In this study, care recipients' early phase cognitive
impairment (MMSE) and functional declines (ADL and
IADL) were not correlated with AD caregivers' depression.
However, signi®cant correlations between stroke care
recipients' impairments and stroke caregivers' depression
were observed (at time 1 for MMSE and IADL and at time 2
for ADL and IADL). At time 1, approximately 3 months
into the stroke trajectory, spouse caregivers were most
likely to be experiencing the full brunt of the care
recipients' impairment. By time 2 (9 months post-stroke),
little additional improvement can be expected for stroke
victims (Hickey 1997). Thus, in situations where the care
recipient did not improve, we can speculate that the
hopelessness of the situation began to be realized.
By time 3 (15 months post-stroke), no relationships
between impairment characteristics and stroke caregivers'
depression were observed. The literature is equivocal in
this area. Findings from this study are consistent with that
of Anderson et al. (1995) who reported no signi®cant
relationship between caregivers' emotional illness and
stroke patients' physical disability 1 year post-stroke.
However, Carnwath and Johnson (1987), for a similar time
frame, reported signi®cant increases in rates of depres-
sion, and that depressed spouses cared for more severely
impaired stroke victims.
These seemingly contradictory observations may be
reconciled by re-de®ning the early stroke caregiving
trajectory and suggesting a branching into three potentially
different outcomes similar to those as suggested by Schulz
and Williamson (1991): (a) continuous improvement of
care recipients and improved caregiver emotional health
over time; (b) some residual impairment in care recipients
to which caregivers adapt; or (c) continuous decline in
care recipients with negative emotional and physical
health consequences for caregivers. Findings from this
study support the view that negative physical health
consequences may manifest at a later point in the care-
giving career, although ethnic background may play an
important role in adaptational response.
A cautionary note is necessary. In addition to the small
sample size of this study, the relatively low internal
reliability coef®cients for depression (alpha 0á79) and
physical health (alpha 0á77) may have obscured more
subtle health changes in the subjects. Alpha tends to the
in¯uenced by the number of items in each scale which
was 10 for the Short Zung Depression Index and 7 for the
MAI. Different measures could be used in future research.
Despite the acknowledged limitations, ®ndings from
this study suggest that interventions with caregivers need
to be targeted according to type and phase of an illness
trajectory. AD caregivers' depression warrants attention
even in the early phase of the spouse's illness. As yet, the
earliest diagnosis of probable Alzheimer's disease does
not take place until moths, sometimes even years, after
symptoms occur, symptoms that typically are denied or
ignored and only identi®ed retrospectively by the patient
and caregiver. Currently, routine genetic testing for
susceptibility genes is not recommended, but with greater
public awareness it may be possible to target `at risk'
individuals. Baseline data early in the AD illness
trajectory could be obtained, and counselling could be
provided to caregivers to ward off depression. Appropriate
psycho-pharmacological interventions need to be
carefully examined given that the caregiver with the
highest depression score in this study was receiving
anti-anxiety, not antidepressant, medication. However,
even with earlier identi®cation, long-term support and
treatment will be important. While initially AD caregivers'
physical health seems to remain stable and appears to be
more robust than emotional health, the cumulative effects
of prolonged depression on physical health have to be
considered. Long-term counselling should provide
anticipatory guidance about what the future holds,
develop the caregivers' ability to handle problem behav-
iours, and connect them to support services such as
respite care (Buckwalter et al. 1995).
Stroke caregivers' depression also warrants attention
in the early phase of the spouses' illness, that is in the
immediate post-stroke period when the caregivers' lives
have been suddenly and dramatically changed. The
intriguing ®ndings about stroke caregivers' race may
indicate a buffering effect inherent in the African
American culture which helps caregivers to accept and
adjust to the spouses' disabilities. During the recovery
Issues and innovations in nursing practice AD stroke caregiver health
Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 30(3), 552±563 561
phase and especially if the stroke victim does not
recover, all caregivers will need assistance with home
modi®cations to compensate for the spouses' disabili-
ties. When caregivers' emotional health is affected
(irrespective of race), counsellors can address coping
strategies for handling the stroke victims' irritability,
impatience, apathy or denial of de®cits (Williams 1994).
Mobilizing help from other family members or signi®-
cant others and assisting caregivers to connect with a
stroke support group are additional intervention strate-
gies. For both AD and stroke caregivers there is the risk
that with prolonged caregiving responsibilities, their
physical health will deteriorate. Perhaps by providing
early assessments and targeted interventions for their
emotional health, AD and stroke caregivers' physical
health can be maintained. Hopefully, this would
improve their quality of life as well as their stamina
to provide optimal care for an ill family member.
Acknowledgement
This study was supported by the National Alzheimer's
Association, Mary Sue Glover Memorial Pilot Research
Grant.
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