Factors Decreasing Caregiver Burden to Allow Patients with

Cerebrovascular Disease to Continue in Long-term Home Care

Aki Watanabe, MSc,* Michinari Fukuda, PhD,* Makoto Suzuki, PhD,*

Takayuki Kawaguchi,* Toshiya Habata, MSc,* Tsugio Akutsu, PhD,†
and Tadashi Kanda, PhD‡

Background: This study attempted to assess continued long-term home care by

examining patients’ independent activities of daily living (ADLs) and caregivers’
free time. Methods: We surveyed the main caregivers of 52 patients with cerebrovas-
cular disease with continuous home care from 1999 to 2010. Survey items were pa-
tients’ ADLs, the frequency of use of care services, care requirements, and caregiver
sense of burden. We compared the survey results between years. Results: ADLs of
excretory control, verbal expression, verbal comprehension, and range of activities
showed significant deterioration from 1999 to 2010. Patient need for care increased
significantly but use of care services did not. Main caregivers were typically spouses
who aged together with the patients. Main caregivers rarely changed; occasionally, a
son or daughter-in-law became the main caregiver. Patients typically required less
than 3 hours of care daily, which did not change over time. Caregivers had signifi-
cantly more difficulty maintaining their own health in 2010 than 1999. However,
they did not identify increases in difficulties with housework or coping with
work. They felt that caregiving was a burden but did not indicate that the family
relationship had deteriorated. Conclusions: Regardless of degree of independence
of patients’ ADLs, caregiver burden was severe. To decrease caregiver burden, it
is necessary to use care services, reduce care time, and allow caregivers free time.
In addition, it is possible to continue long-term home care by maintaining their
relationships. Key Words: Caregiver burden—cerebrovascular disease—home care.
Ó 2015 by National Stroke Association Open access under CC BY-NC-ND license.

Introduction people’s independent living and to reduce their

Populations in countries such as Japan, the United
States, and Europe are aging rapidly, and it is becoming
a serious problem.1 In Japan, the long-term care insurance
system was introduced in 2000 to support elderly
From the *Faculty of Rehabilitation, School of Allied Health
Sciences, Kitasato University, Kanagawa; †Department of Neurology,
School of Medicine, Kitasato University, Kanagawa; and ‡Department
of Physical Therapy, School of Health Sciences, Toyohashi Sozo Uni-
versity, Aichi, Japan.
Received August 18, 2014; accepted September 10, 2014.
Address correspondence to Aki Watanabe, MSc, Faculty of Reha-
bilitation, School of Allied Health Sciences, Kitasato University,
1-15-1 Kitasato, Minami-ku, Sagamihara, Kanagawa 252-0373, Japan.
E-mail: aki.wtnb@kitasato-u.ac.jp.
1052-3057
Ó 2015 by National Stroke Association
Open access under CC BY-NC-ND license.
http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2014.09.013
caregivers’ burdens. As a result, home care services and
number of patients living at home have increased.
The city of Tokyo held a ‘‘Tokyo Home Care Promotion
Meeting’’ in October 2010, highlighting problems and
future directions in promoting more home care.2 Move-
ments to promote home care have been developed by
various local governments and Tokyo. However, various
problems can occur with care in the family environment,
such as the declining birthrate, trend toward smaller fam-
ily size, elderly care by elderly persons, and increases in
amount of care time.3 In addition, problems with patients
can occur with home care, such as the prolongation of
their care periods by medical improvements3 and
decreases in terminal severity of patients’ disabilities.
In these situations, it is useful to examine the current
conditions of home care from the perspectives of both
the patients and caregivers. This enables evaluation of

424 Journal of Stroke and Cerebrovascular Diseases, Vol. 24, No. 2 (February), 2015: pp 424-430
STROKE PATIENTS’ LONG-TERM HOME CARE
the social resources needed for current and future aging
society. The importance of promoting home care is
obvious, but the factors that support continuous home
care are not clear. The caregiver burden seems to be se-
vere. Therefore, we examined 2 possible factors that could
affect continued long-term home care: caregivers’ free
time and degree of independence in patient’s activities
of daily living (ADLs). One objective of this study was
to determine changes in caregivers’ senses of burden
over the long term (.10 years). We also examined the fac-
tors that support continuous long-term care by analyzing
changes in survey contents between 1999 and 2010.
Materials and Methods
Subjects
Subjects were 436 patients with acute stroke consec-
utively admitted to the Department of Neurology at
the Kitasato University Hospital between 1993 and
1997. In 1999, surveys were mailed to 406 patients (30
patients had been admitted more than once or had
died). The survey was completed by the main care-
giver, and 294 completed responses were obtained.4
Figure 1. We surveyed ADL and care situa-
tions in 1999 and obtained 294 completed re-
sponses from the patients’ main caregivers.
Then, long-term care insurance was introduced
in 2000. We surveyed these 294 cases again in
2010 and obtained 86 answers. Of these, 52 cases
were completed responses used for this study.
Abbreviation: ADL, activity of daily living.
425
We surveyed these 294 individuals again in 2010.
Of those, 99 were eliminated (because of unknown
address or death). Surveys were mailed to 195 patients,
and responses were obtained from 86 (response rate of
44.1%). Of these, 52 provided complete responses;
these patients and main caregivers were the final
sample (Fig 1).
Methods
The postal survey was addressed to the patients. The
request to the patients and an inner envelope for caregivers
were placed in the outer envelope. The request explained
the purpose of our study to the patients. If they agreed,
they gave the inner envelope to caregivers. The inner
envelope contained a request, a study manual, and a self-
addressed envelope. If they agreed, the caregiver
completed the survey. The study manual indicated that
reply (rather than signature) constituted informed consent.
The 1999 survey comprised 6 pages. It was deve-
loped from questionnaires of Japan’s Ministry of Health,
Labour, and Welfare cardiovascular disease–sponsored
research5 and physical exercise guidelines.6 We modified
the 1999 survey by changing ‘‘public service’’ to ‘‘care
426 A. WATANABE ET AL.

Table 1. Patients’ attributes Patients’ Lives (ADLs)

Subject (n) 52 In 2010, 84.0% reported adequate gait with 10.0%

Males 37 bedridden. No one used a portable toilet or urine bottle,
Females 15 and 92.0% were independent or assisted in toileting. Pa-
Age (y) tients were independent in dressing (84.0%) and eating
Mean 6 SD 69.8 6 8.1 (89.8%). Bathing assistance was required by 32.0%. There
Range 53-90 were no significant differences in these ADL items be-
Clinical categories, n (%) tween 1999 and 2010.
Cerebral hemorrhage 13 (25.0) Significant differences were found in excretory control,
Atherothrombotic infarction 21 (40.4)
verbal expression, verbal comprehension, and range of
Lacunar infarction 8 (15.4)
activities. Independence of excretory control was 85.7%
Cardioembolic infarction 6 (11.5)
Unclassified infarction 4 (7.7) in 1999 but decreased to 67.4% in 2010. Expression
Stroke recurrence 6 (11.5) decreased moderately from ‘‘possible’’ to ‘‘difficult,’’
Follow-up (mo) whereas ‘‘impossible’’ increased from 2.0% to 7.7%. In
Mean 6 SD 192.2 6 21.0 comprehension, ‘‘good’’ decreased from 76.9% to 65.4%,
and the percentages of ‘‘disabled’’ and impossible
increased. In range of activities, patients who could leave
service’’ to reflect the long-term care insurance system. the home site decreased from 84.3% to 62.0% and patients
We also added questions regarding the presence of certi- for whom the range of activities narrowed to only indoor
fication of care need, changes in main caregiver, and or home sites increased (Table 2).
changes in daily duration of care time required. The final Few patients performed rehabilitation in 2010. This was
2010 survey comprised 7 pages. The main survey items not significantly different from 1999. In 2010, 18 patients
were patient’s ADLs, rehabilitation performance, fre- (35.3%) received certification of care need, with nursing
quency of use of long-term care insurance services, types levels ranging from support required to care level 5. Of
of care, main caregiver, daily time and duration of care, these 18 patients, 13 used a total of 27 care services.
and caregiver’s sense of burden (Fig 1). Caregivers re- Care services included leasing medical equipment (6
sponded by selecting their answer from several choices cases), followed by day service nursing care, bathing ser-
or a numerical value. This study was approved by the vices, and home improvements (4 cases each). Care ser-
Institutional Review Board at the Kitasato University vice use (regarding patient or type) did not differ
School of Medicine and Hospital (#B10–09) and School between 1999 and 2010; 13 families (25.0%) consisted of
of Allied Health Sciences (#2009–088). 2 persons including the patient, and 10 families (19.2%)
consisted of 3 people.
Statistical Analysis
We compared the 1999 and 2010 responses of 52 sub- Main Caregiver and Care Need
jects. Values are expressed as means and standard devia-
Twenty-one of 52 individuals (42.0%) reported the need
tions. A Wilcoxon test was used to compare the 2 groups.
for care, a significant increase from 1999 (23.1%, P , .05).
A McNemar test was used for proportional analysis.
Nine of those 21 individuals (except 1) had no need for
Smirnoff testing was used for the analysis of proportional
care, and the remaining 11 had required nursing care in
differences. The significance threshold was .05. Statistical
1999. There was no significant difference between mean
analysis was completed using SPSS version 20.0 (IBM,
age of patients who required nursing care and patients
Tokyo, Japan).
who did not in 1999 or 2010 (70.8 6 9.1 versus
69.2 6 7.4 years).
Results
Main Caregiver
Patients
The main caregiver was most commonly a spouse (4
Patients’ Attributes
husbands and 4 wives, 61.5%). Other than a spouse, care-
The mean age was 57.8 6 8.1 years in 1999 and givers were a daughter-in-law or sons. The 2 sons re-
69.8 6 8.1 years in 2010. There were 37 male patients ported were 39- and 46-year old. One daughter-in-law
and 15 female patients. Clinical categories included 13 ce- replaced a spouse as caregiver. The main caregiver of 3
rebral hemorrhages, 21 atherothrombotic infarctions, 8 of 15 patients (a 68-year-old man, 76-year-old man, and
lacunar infarctions, 6 cardiogenic cerebral infarctions, 83-year-old woman) shifted between 1999 and 2010.
and 4 unclassified infarctions. Strokes recurred in 6 pa- The mean age of caregivers was 53.9 6 9.3 years in 1999
tients (11.5%). The mean follow-up from onset was and 68.8 6 16.4 years in 2010. Caregivers in 2010 were
192.2 6 21.0 months (Table 1). significantly older than 1999 (P , .05). In 1999, the oldest
 STROKE PATIENTS’ LONG-TERM HOME CARE 427

caregiver was 64 years. In 2010, the oldest was 92 years.

The mean age of spouse caregivers was 75.4 6 11.5 years.

,.05

,.05
,.05
,.01
ns

ns
ns
ns
ns
P
Care Requirements

disability
Severe

8.0
4.1
12.0
4.0
7.7
3.8
6.0
10.0
10.2
There were no gender differences in care needs be-

(%)
tween patients. The mean care period in 2010 was
178.4 6 60.8 months. The difference in mean follow-up
Moderately

time was about 15 months. In 2010, 4 individuals required

disability
severe

‘‘less than 2 hour’’ daily (36.4%) and 3 each required ‘‘1-

6.1
2.0
14.0
1.9

12.0
6.0
(%)

0
0
3 hours’’ and ‘‘12 hours or more’’ (27.3%). These require-
ments were not statistically different from 1999 (Fig 2).
However, compared with 1999, 5 caregivers (35.7%) felt
Moderate
disability

daily care time had ‘‘increased’’ and 6 (42.9%) noted ‘‘no

2.0
2.0
4.0
7.7
9.6
20.0
14.0
12.2
(%)
2010

change’’.

Caregiver Burden
disability
Slight

14.0
20.4
20.0
10.0
26.9
21.2
8.0
14.0
8.2
(%)

Seven items (with 4 response choices) assessed sense of

caregiver burden (Fig 3). In 2010, 69.3% of caregivers had
difficulty maintaining their own health, 66.7% had diffi-
No significant

culty doing housework and coping at work, 68.8% had

disability

difficulty going out, 60.0% had difficulty taking free

67.4
64.0
68.0
55.8
65.4
54.0
56.0
69.4
78.0
(%)

time, and 60.0% had difficulty mentally relaxing. More-

over, 37.6% of caregivers felt deterioration in the family
Table 2. ADLs of the patients

relationship and only 18.8% reported unlimited sleep.

disability

Caregivers in 2010 had significantly more difficulty main-

Severe

(%)

3.9
4.1
7.8
3.9
2.0

2.0
5.9
3.8

taining their health and doing housework and coping at

0

work than in 1999 (P , .05). On the other hand, caregivers

who were not required to do housework or cope at work
Moderately

disability

increased from 0% to 20.0%. Other items of burden were

severe

2.0
11.8
2.0
2.0
11.7
5.9
2.0
(%)

not significantly different compared with 1999.

0
0

Discussion
Moderate
disability

5.9
2.0

3.8
2.0
9.6
3.9

11.4
11.8
(%)
1999

We examined the continuation of care for home stroke

0

patients over 12 years and determined changes in patients

and caregivers over that time. Of 294 subjects responding
Abbreviation: ADLs, activities of daily living; NS, nonsignificant.
disability

completely in 1999, 86 (17.7%) responded in 2010 and 52

Slight

10.2
19.6

17.3
15.7
11.5
3.9

3.9
23.1
7.8
(%)

responses were complete. Long-term care appears to

rarely continue for more than 10 years.
In Japan, home health care has been promoted through
No significant

the introduction of the long-term care insurance system in

disability

2000 to support patient independence.7 Although the de-

64.7
78.4
61.5
76.9
68.6
68.6
73.1
88.3
85.7
(%)

gree of ADL independence in 1999 was generally high in

our subjects,4 it was suggested that ADL independence
level might affect continuation of home care. Moreover,
Control of excretion (n 5 49)

patients were aging. It is gratifying that patients can

Field of activities (n 5 50)
Comprehension (n 5 52)

continue home care even if they worsen over 12 years.

Patient ADLs of gait, eating, toileting, dressing, and
Locomotion (n 5 50)

Expression (n 5 52)
Toileting (n 5 50)

bathing did not differ significantly between 1999 and

Dressing (n 5 50)
Bathing (n 5 50)
Eating (n 5 49)

2010. In other words, they kept their ADL levels over

12 years. However, excretory control, verbal expression,
verbal comprehension, and range of activities signifi-
cantly deteriorated in 12 years. If degree of independent
self-care, excretory control, transfer, and gait were high,
the quality of life of the caregiver increased.8 The
428
accumulated efforts of patients and caregivers main-
tained self-care independence so that long-term care
could continue. On the other hand, the 4 items that
decreased were likely caused by aging. As physiology de-
clines with aging, excretory control becomes difficult.
Moreover, degeneration of cognition affects expression
and comprehension. When the family caregiver’s satisfac-
tion with language communication decreases, they may
feel a greater sense of care burden.9 If decreases in expres-
sion and comprehension lead to discontinuing long-term
care, then support to avoid deterioration of communica-
tive competence is important. Moreover, the available
range of activities reduces as both patients and caregivers
age, even if they can walk. The range of activities may be
limited, but they can interact in the home site or a living
room. In other words, it is gratifying that patients do
not become bedridden.
Figure 3. Of the 7 items on caregiver burden that we surveyed in 2010, the items that changed significantly compared with 1999 were ‘‘keeping their health’’ and
‘‘doing housework and coping at work’’ (P , .05, respectively).
A. WATANABE ET AL.
Figure 2. In 2010, ‘‘fewer than 3 hours’’ of care
time per day accounted for 60% or more of re-
sponses. However, this was not a statistically
significant difference from 1999.
After our survey of 1999, the long-term care insurance
system was introduced in 2000. By 2012, rehabilitation
and use of care services had changed. In a similar survey
of caregivers and patients who had strokes after 2004,
subjects used care services heavily. Moreover, rehabilita-
tion changed from medical insurance to long-term care
insurance. The system was widespread among the pa-
tients and their caregivers after the system’s introduc-
tion.10 However, the subjects of this study were patients
continuing home care from before the system’s introduc-
tion. Therefore, because they did not use many care ser-
vices, we assume that the system was not publicized to
them. Local medical welfare practitioners must publicize
the long-term care insurance system widely, particularly
for patients and caregivers continuing long-term care. It
is also important that we examine the introduction of
the system where needed to reduce care burden.
STROKE PATIENTS’ LONG-TERM HOME CARE
Patient care duration was about 15 years. Stroke pa-
tients returned home in about 15 months, and their care-
givers continued care for the long term (over 15 years). In
2010, the patients who needed care significantly increased
from 1999, but about half of the patients had no need for
care in 1999. Some impairment and disability occurred
during home care of 12 years. On the other hand, long-
term caregivers (over 12 years) need emotional support.11
Their feelings about care are complicated; depression in
the main caregiver is a factor in their sense of care
burden.12 More attention to caregiver physical and
mental health should be paid.
More than 60% of the main caregivers were a spouse in
1999, and gender differences were not found. Other than
spouses, the caregivers were sons and a daughter-in-law,
which was no change from 1999. Sons who were main
caregivers were 39- and 46-year old, and attention should
be paid to men in their prime providing care. Such people
could use care services and get assistance from commu-
nity support.
Moreover, there were only 3 cases where the main care-
giver changed from 1999. The same caregiver (mainly a
spouse) provided care for the long term. In addition, the
caregiver spouses aged with the patients. Therefore, it is
important for caregivers to consider physical and mental
health. In the 3 cases of caregiver change, the patients
were aged 68, 76, and 83 years. We can easily imagine a
spouse was aged and the main caregiver changed because
problems occurred in spouses themselves. In these cases,
the families were limited to 2-3 people, leaving one or no
care providers other than the existing caregiver and the
patient. Moreover, because care services were not used,
only the family provided support. Although these results
showed little care service use (2 kinds or less), another
report13 on long-term home care that had no second care-
giver had similar findings. Because the spouse and pa-
tient age together, elderly care by elderly persons in the
home is difficult.14 Patients can continue to participate
in the local community through care service use and local
community support.
More than 60% of main caregivers reported daily care
time ‘‘less than 3 hours.’’ This is one of the factors that
may allow long-term care to continue. Many reports15-21
indicated that lack of free time and time restriction were
factors in the care burden, and we reported that
caregivers appreciated free time.4 Moreover, care burden
reduced if caregivers used time for hobby activities, and
they had time completely separate from care.22 Because
the main caregivers in this study reported limited care
duration, we imagine they could easily find free time,
making it easier for long-term care to continue. However,
because 60% or more caregivers responded that subjective
care time ‘‘increased’’ or had ‘‘not changed’’ over time,
subjective care burden was not decreasing.
Finally, we evaluated sense of care burden for the main
caregivers. In the surveyed items, there were changes in
429
the items ‘‘their health’’ and ‘‘doing housework and
coping at work’’ since 1999. Caregivers reporting diffi-
culty in keeping their health significantly increased.
This is likely because of fatigue caused by long-term
care and decline in body function because of their own ag-
ing. Caregiver burden in doing housework and coping at
work did not change, but the caregivers without such dif-
ficulties increased from 0% to 20%. In long-term care of
12 years, typical care duration is less than 3 hours. There-
fore, caregivers have their own time, and care becomes a
part of life-like housework. Moreover, because the care-
givers are aging together with the patients, many care-
givers have retired even if they had been working. In
this way, the life pattern of the caregivers changes and
we hope that the care becomes embedded in their life.
Caregiver going out and free time were limited, and
their sleep and mental relaxation were also limited. These
did not change from 1999. Caregivers have a heavy sense
of care burden. However, 62.4% of caregivers did not feel
the family relationship deteriorated. Family relationships
must be maintained to continue long-term care.
Conclusions
Regardless of degree of independence of patients’
ADLs, caregiver burden was severe. To decrease severe
caregiver burden, it is necessary to use care services,
shorten care time for the caregivers, and allow caregivers
free time. In the future, we should establish support for
family caregivers to continue long-term home care
because it is important that family relationships be main-
tained.
Acknowledgment: We thank all patients and caregivers
for their participation in this study.
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