Exploring the Relationship between the Pressure Load of Caregivers and the

Behavior of People with Dementia

Chang-Franw Lee1, Cheng-Chang Liu1, Tung Chang2, Kuang-Hua Hsueh3, Jing-Jing Liao4
1
Graduate School of Design, National Yunlin University of Science and Technology (YunTech), Yunlin 64002, Taiwan, ROC
2
Doctoral Program, Graduate School of Engineering Science and Technology, YunTech, Yunlin 64002, Taiwan, ROC
3
Department of Safety, Health, and Environmental Engineering, Chung Hwa University of Medical Technology,
71703 Taiwan, ROC
4
Department of Business Administration, TransWorld University, Yunlin 64002, Taiwan, ROC

Abstract
The purpose of this study was to explore the correlation
between dementia “patient’s behavior (severity and
frequency)”, “social support service”, and “caregiver’s stress
load”. This study collected information from visiting patients
and their caregivers from a special outpatient clinic for
dementia in a medical center in southern Taiwan from
November 2013 to May 2015. During the period, a total of 279
groups and 558 questionnaires were distributed and returned.
The average age of the respondents was 53.1 years old, and the
females accounted for 61.3%. Their education level was mostly
at junior college/university graduation. The patients were
mostly their parents and the average age of the patients was
77.73 years old. The period of tending patients is longer than 3
years. The results of the study showed that there was a
significant positive correlation between “patient’s behavior”
and “caregiver’s stress load”. “social support service” was
significantly negatively correlated with “caregiver’s stress
load”. Regarding the future long-term care (LTC) policies, the
service plans and implementations should include local
Taiwanese cultural customs. Home health care services should
be considered as the priority. The crucial elements in the social
welfare services include the patients’ behaviors, time durations,
numbers of caregivers, and their financial status. These
elements should be evaluated when the major caregivers take
care of or visit their families.
Key words: dementia caregiver, patient’s behavior, social
support service, caregiver’s stress load
Introduction
According to a study by the World Health Organization
(WHO), someone in the world develops dementia every three
seconds. There were an estimated 47.5 million people
worldwide living with dementia in 2015, and this number is
believed to be close to 50 million in 2017. The cost of the
medical care is over US$800 billion per year (Antonovsky &
Kats, 1967).
In 2011, the Ministry of Health and Welfare (MOHW)
designated Taiwan Alzheimer’s Disease Association (TADA)
to study the dementia epidemiology (TADA, 2011). The
estimated dementia patents are over 260 thousand according to
the Ministry of Interior (MOI) demography in September, 2016.
The dementia patents aged over 65 were 243,430, out of every
100 people was a dementia patient, and this developed into 670
thousand after 25 years, being every three out of 100 people.
Dementia is not only a health care issue worldwide, but also in
Taiwan’s families and communities.
Dementia care in Taiwan is similar to that of other Asian
countries. Most dementia patients are cared for in their family
or in a relative’s house. Over 70% of dementia patients were
taken care of by a single caregiver, or by a spouse (Pote &
Wright, 2018; C.-L. Wang, Shyu, Wang, & Lu, 2017). An
inadequate social care system, slow response to requests for
assistance, and the low birth rate leads to the burden of care
being placed on the aging caregivers taking care of their elderly
relatives.
Modes of care and local customs differ significantly between
Eastern and Western societies (Zhang, Clarke, & Rhynas,
2019). In Western societies, elders will spend their remaining
years in a nursing home, although there is an effort to have the
elderly “age in place” (live at home with assistance from
nurses’ aides) until the patient dies. In Eastern society, the
caregivers would incur negative moral judgements from others
if they were to send their elderly relatives to a nursing home
(Butcher, Holkup, Park, & Maas, 2001). Home is the
environment most familiar to patients giving them a sense of
comfort and consistency not usually available in an institution
(nursing home). However, caring for dementia patients at home
is an extremely demanding, and often exhausting responsibility
(Chan, Wong, Kwok, & Ho, 2017). One of the common
behavioral symptoms of Alzheimer’s disease is that wandering.
patients easily become disoriented to place and time, and
frequently attempt to escape the confines of their home, getting
lost in the process. This was the major mental health stressor
for caregivers, fearing the loss or disappearance of their
patient/relative (Andrén & Elmståhl, 2007; Pearlin, Mullan,
Semple, & Skaff, 1990).
According to the Taiwan Association of Family Caregivers
(2014), there were a total of 900,000 family caregivers in
Taiwan. The caregivers would feel stressful directly or
indirectly in the care process, and the stress was related to the
caregivers background, patients’ disability, and stress
resources (like knowledge of disease, level or work stress,
financial issues, conflicts on different roles, self-evaluation,
and social network support) (Pearlin et al., 1990).
The goal of this study is to clarify the issues faced by the
caregivers and to provide a reference in the development of
long term service law, and the 10 year long-term policy 2.0
implementation. This study could provide the basis for
practical treatments utilized by the experienced workers who
understand the cultural background of the home caregivers in
long-term dementia families.
Method
A. Research content
This research was for the purpose of investigating the
dementia behaviors (severity and frequency), level of social
care system, and the stress levels on the caregivers (providers).
The researchers collected demographic information including
personal data, occupational history, and family background.
There are three variables being considered in this study.(1)
“patient’s behavior”, (2) “social support service”, (3)
“Caregiver’s stress load” related variability.
The questionnaire for this study consists of four parts: 1.
Demographic characteristics of respondents (caregivers and
patients); 2. The “patient’s behavior” were divided into two
aspects “severity (S)” and “frequency (F)”; 3. The “social
support service” factors of the caregiver were divided into four
aspects: “wheezing service level demand”, “information level
demand”, “psychological level demand” and “economic level
demand”; 4. “caregiver’s stress load” were divided into
“physiological and psychological burden”, “family relationship
load“, “elderly relationship load“, “social life load” and
“economic load” such as five aspects
B. Research tools
(1) Validity test of the questionnaire
The validity of the research tool in this study is based on
content validity (expert validity). Experts and scholars related
to the research field are invited to assist in the evaluation of the
importance, appropriateness and clarity of the questionnaire
topic for the five-component scale. The order is very applicable
(5 points), very applicable (4 points), applicable (3 points), not
applicable (2 points), should be deleted (1 point). The
researchers obtained a scored average 4.7 points from the three
expert reviewers. The questions that were over standard (0.5
points) were modified in phases, and the researchers also
removed the inappropriate questions.
as research subjects in the Dementia Special Outpatient
Department in a southern Taiwan medical center. This study
used purposive sampling to collect questionnaires. The study
was conducted from November 2013 to May 2015. A total of
558 questionnaires were issued with a recovery rate of 100%.
D. Data analysis
This study used SPSS 25 version for windows software for
statistical analysis, descriptive statistical analysis to explore the
personal attributes of the study, and T-test (T-test), one-way
ANOVA and chi-square Verification, testing demographic
characteristics. Regression analysis were used to explore the
correlation between “patient’s behavior”, “social support
service” and “caregiver’s stress load” from individual attributes
(gender, age, education level).
Results
A. Research content
Among the samples recovered in this study, the basic
information of the main caregivers was female (62.7%). Most
of the relationship with patients is parents (47.0%), the average
age is 53.1 years old, and senior high school level (34.8%),
most of the marital status is married (81.0%). The age of
caregivers is the highest (36.62%) from 50 to 59 years old. The
most common type of dementia was early dementia (29.0%).
In the patient's basic data, the gender of the patients was the
most female (60.6%), the average age of the patients was 77.73
years old, the minimum was 49 years old, and the largest was
101 years old. Among them, 25.4% are aged between 80 and 84.
The proportion of relationship between patients and
respondents was parent (47.0%), spouse (39.1%), and spouse's
parents (12.2%). The number of years of education was 1-6
years (45.52%), and the patients were mostly diagnosed with
AD Alzheimer's disease (82.4%). The severity of the disease
was mild (43.4%).
The patients received the most care for more than 3 years
(52.16%), most of the caregivers lived with the patients
(75.3%), and the main burdens for patients were mostly
patients and spouses (patients) (31.9%).

TABLE I
RELATIONSHIP BETWEEN “PATIENT’S BEHAVIOR”,
“SOCIAL SUPPORT SERVICE”, AND “CAREGIVER’S STRESS
LOAD” (N=279)
patient’s patient’s social
caregiver’s
category behavior behavior support
stress load
severity(S) frequency(F) service
patient’s
behavior 1 .999 ** 0.093 .319 **
severity(S)
Fig. 1 Research structure of the relationship between the stress patient’s
loading on caregiver versus the behavior of dementia patients behavior .999 ** 1 0.092 .317 **
frequency(F)
(2) Reliability verification of the questionnaire social
In this study, Cronbach’s α measures the internal consistency support 0.093 0.092 1 -.118 *
service
between the subscales. The Cronbach’s α of the scales of this caregiver’s
study were all above 0.7, achieving an internal consistency. .319 ** .317 ** -.118 * 1
stress load

C. Research object and process In the relationship between “patient’s behavior” severity(S),
Using both a survey method and a cross sectional study, the the “patient’s behavior” frequency(F) and “caregiver’s stress
researchers sampled the dementia patients and their caregivers load”, it was found that there was a significant relationship
between “patient’s behavior” and “caregiver’s stress load”
(r=0.319 and 0.317, p<0.01)(Table 1).
The independent variables such as “patient’s behavior”
severity, “patient’s behavior” frequency, basic data of
caregivers, and “social support service” are placed in the
regression analysis model to analyze the ability of the
independent variable to influence the “caregiver’s stress load”.
Based on regression analysis results, this study found that
variables predictive function, in “Someone assisted in caring
for patients” (p=0.001<0.001) and ”Someone can tell me the
way to take care of dementia patients” (p<0.05), showing a
statistically significant positive correlation to indicate
caregiver in ”Someone assisted in caring for patients” and
“Someone can tell me the way to take care of dementia
patients” will reduce cared pressure load.
The “patient relations”, “Someone assists in errands and
shopping.”, “Someone can accompany me.” (**p<0.01),
presents significant negative correlation. When caregiver’s
relationship with the patient is not relatives, nobody helps
errands shopping and accompany the time to take care, then its
load pressure becomes higher. Overall regression model has
28.10% explanatory power.
Discussion and Suggestions
In the overall analysis of the basic information more than
half of the caregivers were female, married, had a high school
education, and full time jobs. More than 47% of the caregivers
were daughters of the dementia patients. Their average age was
53.1 years with an age range of 50-59, 47% of the patients were
caregivers’ parents, and 60.6% of the patients were female. The
age range for the dementia patients was from 80-84 (more than
25.4%). The research results showed most married females in
Taiwan were willing to leave their jobs in order to take care of
their parents. Research also showed a high rate of females will
help their siblings in caring for dementia patients.
More than half of the caregivers had been taking care of
these patients for over three years (52.16%). The medical
expenses were paid by the patients themselves or their families
(including spouses, 31.9%). Up to 24.0% of the expenses were
paid for by the dementia patients’ sons, daughters and their
families.
The caregivers showed a lower stress level in these
situations: “People who assist caring for the patients” and
“People who advise the methods on caring patients”. When the
caregivers gave long-term care to the dementia patients, their
roles in work, family, and society were negatively impacted.
The caregivers’ stress levels could be lowered if outside
agencies were involved in supporting the caregivers, thereby
allowing more time for rest.
This study looked at three major variables: patients’
behaviors, social care system, and the stress levels on the
caregivers. The researchers also considered the caregivers’
feedback as a factor in the aforementioned three measures.
In terms of “patient’s behavior”, the caregiver believes that
the average score of the facet is higher in the “frequency”; in
the “social support service”, the average score of the facet of
the “psychological level demand” is higher; in the “caregiver’s
stress load”, the average of the “social life load” facet the score
is higher.
In terms of “social support service”, respondents have job
categories that crowd out other roles, or squeeze their own time
schedules. In “patient’s behavior” severity and frequency of the
facets, the family caregivers tend to mention patients
“Delusion”, “Anxiety”, “Weird behavior” and feel the pressure
to take care of the load.
Coupled with economic pressures, care difficulties and
worries, there is a new challenge every day. It is definitely not
just “Patients are just sick”. The result shows a clear
understanding of patients behavior, social support service,
caregiver stressors, and caregiver stress loads. For future
research, it is possible to further examine how the primary
caregiver balances the disease severity, behavior and care
stressors in the face of different care stress burdens. Assuming
that economy and time already have a significant burden of care,
the caregiver chooses what orders to have in his or her patient
behavior, family motivation, or intrinsic care attitude (Arai and
Zarit, 2014).
As for the designers and practitioners, they would be able to
focus more attention on the interactions, family relationships,
and social needs of both the caregivers and dementia patients.
Caregivers could help to improve their patients’ physical health
and improve their behaviors. Designers and practitioners could
assist family caregivers in evaluating the social service systems
and levels of stress. If these two factors could be modified, the
stress level of the home caregivers could be reduced.
With regard to formulating policies, the needs of the
caregivers could be different based on the level of stress and
family situation. Policies should adhere closely to the needs of
the individual families. With regard to the aging caregivers in
Taiwan, the researchers found challenges in their finances and
physical strength. More community rehabilitation facilities
would be needed including, but not limited to, daycare, elderly
employees counseling, and home recovery. The government
would need to provide more social care services: home
cleaning, bathing, meal delivery, respite care, community
assistance, job guarantees, and a cost of living allowance.
Medical agencies could provide services that lower the
caregivers’ stress; educating caregivers’ in the care of dementia
patients; mental health education; and by increasing the
availability of such resources.
Taiwan has implemented the LTC 2.0 in 2017 to provide
welfare services for family caregivers with eight major services
(e.g. psychological counseling, support groups, care technical
guidance, etc.). However, the public is still unfamiliar with
these services, and the caregiver services implemented through
the long-term care delivery system (e.g. the community's
overall care system, long-lived ABC) have not yet been linked
horizontally. Therefore, government-related family caregiver
policies should be more flexible so that family caregivers can
have opportunities to allocate relevant resources. In addition,
children or major caregivers of dementia need a friendly policy
and environment provided by the workplace, so that they can
protect their rights and interests when they are in critical health.
Acknowledgement
Thanks to all the subjects for their tireless interviews, and
thanks to the Survey Research Data Archive for providing this
information to the successful conduct of the study, to explore
the relationship between ”patient’s behavior”, “social support [14] Wang, C.-L., Shyu, Y.-I. L., Wang, J.-Y., & Lu, C.-H. (2017).
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experiences of caring for persons with dementia in Taiwan.
Aging & mental health, 21(3), 241-252.
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