Family caregivers’ role implementation at different stages of dementia
Family caregivers' role implementation at different stages of dementia
Min-Chi Chen 3 7
0 h ealthy Aging research Center, Chang gung University , Taoyuan , Taiwan
1 school of n ursing, College of Medicine, Chang g ung University , Taoyuan , Taiwan
2 Department of gerontological Care and Management, Chang g ung University of science and Technology , Taoyuan , Taiwan
3 Yea-Ing l shyu
4 Chang gung Dementia Center , Taoyuan , Taiwan
5 s chool of Medicine, Chang gung University , Taoyuan , Taiwan
6 Department of n eurology, Chang gung Memorial hospital , Taoyuan , Taiwan
7 Department of Public h ealth and Biostatistics Consulting Center, Chang gung University , Taoyuan , Taiwan
PowerdbyTCPDF(ww.tcpdf.org) huei-ling huang 1 Purpose: The purpose of this study was to explore family caregivers' role-implementation experiences at different stages of dementia. Patients and methods: For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers' dementia. Results: Family caregivers' caregiving activities were related to patients' stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems. Conclusion: This study's results provide a knowledge base for designing dementia stagespecific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia.
behavioral problem; illness trajectory; role strain; caregiving activity; preparedness
open access to scientific and medical research
As the number of persons with dementia increases worldwide, along with the costs
of their care, the importance of family caregiving will increase. The usual course of
dementia is from 3 to over 9 years, with dementia symptoms characterized by changes at
different stages.1–3 For example, instrumental self-care deficits begin early in dementia,
basic self-care deficits increase as dementia advances, and many distressing behavioral
symptoms decrease in late dementia.4 Thus, family caregivers’ needs and how they
implement their roles might change during the care receiver’s illness trajectory.
Over the illness trajectory, the affected person, his/her family, and health
professionals must combine their efforts to determine the eventual outcome, manage any
symptoms, and handle illness-associated disabilities.5 In terms of the illness trajectory
of dementia, its stages and severity are important to understand as factors influencing
the coping and well-being of family caregivers.4,6 Indeed, family caregivers of patients
with dementia were found to have a very time-consuming decision-making process,
especially during the phase of exploring options after diagnosis, and their acceptance
of the disease was very important in decreasing the patient’s anxiety and resistance to
care.7 Such family caregivers were also found to have high levels of burden associated
with patients’ low cognitive levels, behavioral problems, and
nutritional problems.8 However, few studies have described
and compared caregiving experiences at different stages of
the dementia illness trajectory. In particular, no studies have
focused on Chinese or Asian family caregivers.
During the illness trajectory, the interpretation and
management of disease are influenced by the patient’s
18 and family’s culture.9 Taiwan differs substantially from
l-20 Western countries not only in ethnicity, but also in health
-J2u care systems, clinical practice, culture, and social
organizaon1 tion. For example, 66.5% of Taiwanese elders live with
702 their children,10 whereas only one-fifth and one-quarter of
..64 the elderly live with an adult child in the United States and
.957 Europe,11 respectively. Studies on caregiving experiences
y3b conducted in Western countries are not likely to explain
/om caregiving phenomena in Taiwan. For instance, family
.css caregivers’ commitment to care in other countries may be
re influenced by different sociocultural factors than in Taiwan
.vdoepw l.syeon support for elderly persons with dementia due to the cultural
and other Asian countries, where the family is the first line of
://sw lona value of filial responsibility. Adult children are expected to
h ep take on the responsibilities of caring for their aging parents.12
from roF Indeed, these adult child caregivers were found to care for
de their parents with dementia an average of 43 months and
ldao spent on average 13.45 hours per day caregiving.13 Under
onw the current national health insurance reimbursement system
ignd in Taiwan, home services are not sufficient to support the
gA caregiving tasks of family caregivers of the elderly with
isnn dementia.14 Thus, many caregivers (34.9%) hire care aides,
itno who are mostly foreign.13 Family caregivers not only have to
trvee take direct care of their older relative with dementia, but also
lIna supervise the care activities of foreign aides. Thus,
caregiviilcn ing phenomena in Taiwan might differ from those in other
C countries and need to be further explored.
A perspective on how caregivers actually carry out their
caregiving role is provided by the interactionist approach to
role theory, which proposes that the caregiver role is created
by caregiver–care receiver interactions and caregiver–care
receiver dyad interactions with others.15,16 In the interactionist
approach to role theory, the concept of role implementation
is emphasized, ie, the tasks and behaviors comprising the
role, how role implementation is influenced by interactions
between role partners, and role preparation.16 In
caregiving, role implementation is therefore defined by caregiving
activities (caregiving demand), mutuality between caregivers
and care receivers, and preparedness for caregiving. These
role implementation variables were found to predict
multiple caregiving-specific and generic outcomes,17,18 giving
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health care professionals new insights about how to assist
family caregivers to effectively implement their caregiver
role.15,19,20 Although family caregiving for patients with
dementia has been well studied, few studies have focused on
implementation of the caregiving role during the stages of
dementia. Therefore, the purpose of this study was to explore
family caregivers’ role-implementation experiences at
different stages of dementia, including caregiver experiences of
caregiving activities, role strain, preparedness, and help from
others. We hypothesized that caregiving activities, role strain,
preparedness, and help from others would change at different
stages of dementia. We further hypothesized that caregiver
activities, role strain, and help from others would increase,
and that preparedness would decrease, as the stages of
dementia progressed. Understanding the role-implementation
experiences of caregivers during the dementia illness
trajectory can provide a basis for developing specific interventions
for families of patients at different stages of dementia.
Materials and methods
A cross-sectional, exploratory design was used to explore
the caregiving activities, role strain, role preparation, and
help from others of family caregivers for patients at different
stages of dementia.
study setting and participants
A convenience sample of family caregivers and patients
with dementia was recruited from the neurological wards of
a 3,800-bed medical center and a local hospital in Northern
Taiwan. Patients with dementia were included if they met
these criteria: 1) 65 years, 2) diagnosed with dementia by
a neurologist or psychiatrist, and 3) cared for in a home
setting. Care receivers’ characteristics are presented in Table 1.
Family caregivers were included if they met these criteria:
1) 18 years and 2) having primary responsibility for the care
of the elder with dementia. Overall, the refusal rate was 15%,
primarily due to not having time to give informed consent
during the clinic visit or not being interested in participating.
Of 250 family caregivers enrolled in the study, 176 (70.4%)
completed the questionnaires. Family caregivers’
characteristics are presented in Table 2.
The study was approved by the Institutional Review Board of
Chang Gung University, Taoyuan, Taiwan and appropriate
review boards at the medical center (no 94-891). Families who
met the inclusion criteria were identified by clinic neurologists,
Clinical Interventions in Aging 2015:10
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Clinical Interventions inAging 2015:10
who obtained family members’ permission for an
investigator to contact them. Families who expressed an interest were
contacted by research assistants who further explained the
study and gave them a questionnaire packet to complete at
home and return by mail. Research assistants then contacted
participants by telephone to answer any questions they might
have and to remind them to send the questionnaire back.
Clinical Dementia rating (CDr) scale
The severity of dementia was determined by a neurologist
using the CDR scale,21 which was routinely used to collect
clinical data. The CDR scale uses a semi-structured
interview with both the patient and a reliable informant to assess
performance of cognitive functions in six domains: memory,
orientation, judgment and problem solving, community
affairs, home and hobbies, and personal care. Each domain
is rated for level of impairment: none (0), questionable (0.5),
), moderate (
), and severe (3). The transcultural
feasibility, reliability, and validity of the CDR have been
established in a Chinese population,22 and the CDR has been
used in dementia studies in Taiwan.23,24
Caregiving activities, ie, what and how much the family
caregiver has to do to assist the care receiver, were measured
using the Caregiving Activities Scale of the Family
Caregiving Inventory (FCI).19,25,26 This 87-item scale measures tasks
related to personal care (15 items), mobility and protection
(seven items), illness-related care (19 items), banking and legal
issues (four items), transportation (five items), housekeeping
(three items), emotional support (12 items), managing
symptoms of dementia (13 items), and arranging care (six items).
For each item, the score is either 0 (no) or 1 (yes). The score
for each subscale is calculated by summing the item scores and
dividing by the number of caregiving tasks the family caregiver
indicated that he/she needs to perform. For this study, the FCI
was translated and back-translated to establish the validity of
the Chinese-version FCI. Reliability estimates ranged between
0.80 and 0.90.19,25,26 In this study, the internal consistency
reliability of the Caregiving Activities Scale, assessed using the
Kuder–Richardson Formula 20, ranged from 0.60 to 0.90.
Role strain, the felt difficulty in fulfilling the role obligations
of family caregiver,19 was measured by the 87-item Role
Strain Scale of the FCI as the degree of difficulty perceived
by family caregivers in administering different types of
family caregiving tasks. For each item, the score ranges from
0 (easy) to 4 (very difficult). The reliability of the Role Strain
Scale of the FCI has been reported to exceed 0.70 (usually
0.80 to 0.90).19,25,26 Cronbach’s alpha for the Role Strain Scale
of the FCI in this study ranged from 0.70 to 0.90.
Preparedness, which refers to a caregiver’s self-assessment
of his/her adequacy for providing care, was measured by
self-report on an eight-item Preparedness Scale that rates
how well caregivers think they are prepared for seven
domains of caregiving.19,25 A final question asks caregivers
to give an overall rating of how well prepared they are to
care for the care receiver. Scores can range from 0 to 32,
with 0 representing least prepared and 32 representing most
prepared. Cronbach’s alphas ranged from 0.86 to 0.92 in
studies on family caregiving of frail elders in the US.19,27–29
The Preparedness Scale was translated and back-translated
in this study to establish the validity of the Chinese version,
and Cronbach’s alpha was 0.92.
Amount of help from others
Amount of help from others, ie, what and how much other
people help family caregivers in delivering caregiving
activities, was measured using the Help from Others scale in the
FCI.19,25,26 This three-item scale measures amount of help
from relatives, hired aides, and friends and neighbors. For
each item, response options are none at all (0), a little (
), quite a bit (3) and a great deal (
). The amount
of help from others is calculated by summing the scores
of the three items. Scores can range from 0 to 12, with 0
representing no help from others and 12 representing a
great deal of help from others. This scale was translated and
back-translated in this study to establish the validity of the
Chinese version, and Cronbach’s alpha was 0.50. The low
internal reliability could have resulted from the small number
Characteristics of elderly persons with dementia
Self-care ability of elderly persons with dementia was
measured by caregivers’ reports on the Chinese Barthel Index,
which assesses performance of activities of daily living
(ADLs),32,33 and the Instrumental Activities of Daily
Living Index.34 Elderly persons were categorized as
independent; only instrumental ADLs impaired; one to two ADLs
impaired; three to four ADLs impaired; or five or more ADLs
impaired.35,36 The number of comorbidities was collected
from patients’ medical charts. Cognitive functioning was
measured by the Chinese version of the Mini-Mental State
Data were analyzed using SPSS 19.0 software. Statistical
significance was determined at P0.05. Sample characteristics
were analyzed by descriptive statistics. Among-group
differ8 ences in continuous-variable characteristics were examined
l-021 by one-way analysis of variance (ANOVA). Among-group
-Ju differences in categorical characteristics were examined by
chin21 square tests. Differences in caregiving activities, role strain,
70o preparedness, and amount of help from others were examined
.624 by analysis of covariance (ANCOVA) among different
demen..95 tia severity groups (mild, moderate, or severe dementia) after
y73 controlling for caregivers’ years of education. For outcome
/bm variables that were significant in ANCOVA, group differences
.cso were further examined by Scheffé post hoc tests. Group
difrse ferences in single items related to preparedness and amount of
.vdoepw l.syeon tion of the Kruskal–Wallis and Mann–Whitney U-tests.
help from others were further examined by sequential
:ttsp rson Results
from roF Caregiving activities
ed In terms of caregiving activities (Figure 1, Table S1), family
ldoa caregivers of patients with mild dementia provided more
onw assistance with transportation than with other caregiving
igdn activities. In addition to transportation, family caregivers of
gA patients with moderate dementia provided more assistance
isnn with mobility and protection than with other activities. For
family caregivers of patients with severe dementia, more
assistance was provided for personal care, mobility and
protection, transportation, and housekeeping than for other
Comparison of amount of care activities performed by
caregivers at different stages of dementia (CDR rating), after
controlling for family caregivers’ years of education, showed
that caregivers of patients with moderate and severe dementia
provided significantly more overall care activities (F=10.21,
P0.001), personal care (F=35.87, P0.001), and mobility
and protection (F=8.52, P0.001) than caregivers of patients
with mild dementia. At the same time, after controlling for
family caregivers’ years of education, caregivers of patients with
moderate dementia provided significantly more illness-related
care (F=4.25, P0.05), housekeeping (F=3.85, P0.05),
and care activities related to symptoms of dementia (F=3.72,
P0.05) than caregivers of patients with mild dementia.
Family caregivers’ average role strain from doing nine types
of care activities for persons with mild, moderate, or severe
dementia is shown in Figure 2 and Table S2. Caregivers’
difficulty associated with most types of caregiving activities
for patients with mild dementia ranged from easy (mean [M]
=0.39, standard deviation [SD] =0.49) to not too hard (M
=0.88, SD =0.67), except for activities related to managing
symptoms of dementia (M =1.23, SD =0.76), which ranged
from not too difficult to somewhat difficult. Most types of
caregiving activities for patients with moderate dementia
Type of care activity
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ranged from not too difficult (M =1.19, SD =0.85) to
somewhat difficult (M =1.65, SD =0.96), except for helping with
banking and legal issues (M =0.58, SD =0.73) and
housekeeping (M =0.72, SD =0.74), which ranged between easy
and not too difficult. For caregivers of patients with severe
dementia, all types of caregiving activities ranged from not
too difficult (M =0.99, SD =0.99) to somewhat difficult (M
=1.99, SD =1.02). The most difficult type of caregiving
activity reported for patients at all three stages of dementia
(severity level) was managing symptoms of dementia.
Comparison among patients at different stages of
dementia showed that caregivers of patients with moderate
and severe dementia experienced more role strain related to
overall amount of care activities (F=12.69, P0.001) and
more role strain related to all types of caregiving activities,
except for role strain related to managing banking and legal
issues and arranging care, than caregivers of patients with
mild dementia. For managing banking and legal issues, more
role strain was reported by caregivers of patients with severe
dementia than by caregivers of patients with mild and
moderate dementia (F=3.43, P0.05). For arranging care, more
role strain was also reported by caregivers of patients with
severe dementia than by caregivers of patients with moderate
dementia (F=14.06, P0.001).
of the severe dementia group, M =1.77, SD =1.02). In terms
of items measuring preparedness, the overall sample felt
less prepared to make care activities pleasant for both
caregiver and patient (M =1.90, SD =1.0) and to get help and
information from health care systems (M =1.90, SD =0.97)
than for the other items (M =2.01 to 2.14). Although family
caregivers of patients with severe dementia felt less
prepared than caregivers of patients with mild and moderate
dementia, preparedness did not differ significantly among
the three groups.
help from others
In terms of overall help, family caregivers received a
little help from others (M =3.19, SD =2.59). Caregivers of
patients with moderate and severe dementia received more
overall help (M =3.46, SD =2.75 and M =4.04, SD =2.77,
respectively) from others (F=3.88, P0.05) than
caregivers of patients with mild dementia (M =2.76, SD =2.35).
In particular, caregivers of patients with severe dementia
received more help from people they paid (M =2.22,
SD =1.59) than caregivers of patients with mild dementia
(SD =1.00, SD =1.51). The three groups of caregivers did
not differ significantly in amount of help from relatives and
Overall, family caregivers reported being somewhat prepared
for the caregiver role (for caregivers of patients with mild
dementia, M =2.10, SD =0.70; for caregivers of the
moderate dementia group, M =2.05, SD =0.80; and for caregivers
This study is the first to characterize the role-implementation
experiences at different stages of dementia in a Taiwanese
sample of family caregivers. We found that caregivers’
caregiving activities were related to patients’ stages of
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dementia. Caregivers of patients with mild dementia
provided more assistance in transportation than caregivers of
patients with moderate and severe dementia. This difference
might be due to persons with more advanced dementia being
more difficult to engage in outside activities, easily
resulting in frustrating experiences and shame for caregivers.38,39
Caregivers provided more assistance with housekeeping and
81 mobility and protection for patients with moderate dementia
l-20 and more assistance with personal care for patients with
-Ju2 severe dementia than caregivers of patients with mild and
1no moderate dementia, respectively. These differences might be
207 due to increasing impairment in instrumental ADLs and ADLs
..46 with more advanced stages of dementia, as shown in Table 1.
.795 This possibility is supported by prior reports that instrumental
yb3 self-care deficits begin early in dementia and basic self-care
/om deficits increase with dementia severity.4,40 Our results also
.css echo a report that the amount and associated economic
re cost of informal care to patients with dementia increased
.vdoepw l.syeon dramatically as their cognitive impairment progressed.41
w u Family caregivers of patients with moderate and severe
/:/sw lona dementia experienced more difficulty associated with most
h ep types of caregiving activities overall than caregivers of
from roF patients with mild dementia. Perceived difficulty associated
de with the caregiving role in terms of the care receiver’s
demenldao tia stage has not previously been studied, but one study found
onw that, when spousal caregivers of the elderly transitioned to
ingd heavy caregiving over 5 years, they had more depressive
gA symptoms and poorer perceived health.42 In particular, our
isnn study found that managing symptoms of dementia was the
iton most difficult caregiving activity at all stages of dementia.
trvee This result is supported by a review of the dementia
caregivlIna ing literature32 that shows that family caregivers’ mental and
ilicn physical morbidity was associated with patients’ problem
C behaviors. Similarly, family caregiver burden was associated
with dementia-related symptoms, an association that became
stronger over time,6 and was inversely associated with low
MMSE scores and behavioral problems.8
The family caregivers in this study reported being
somewhat prepared for their role, which is less prepared than
reported by US family caregivers of elderly persons after
hospital discharge19 and patients with cancer.16 Whether these
differences are due to taking care of patients with different
conditions or to cultural differences needs to be further
explored. Assessing family caregivers’ acceptance of and
preparation for the caregiver role is important, since
acceptance is critical in decreasing anxiety and resistance to care.7
It is worth noting that family caregivers in our study reported
feeling only somewhat prepared to provide care regardless
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of patients’ dementia severity, especially in making care
activities pleasant for both caregiver and patient as well as in
getting help and information from health care systems.
Most of the help received by family caregivers was
from hired helpers, and the amount of help increased as the
severity of dementia increased, from one-third of family
caregivers of patients with mild dementia to over one-half
of the family caregivers of patients with severe dementia.
These results are consistent with previous findings that
around 30% of Taiwanese family caregivers of patients with
dementia had paid assistance.43,13 Despite the difficulties for
Taiwanese families in caring for their disabled older family
members at home, due to smaller families and the influence
of industrialization,44 most family caregivers of patients with
dementia still believed that home care is the best method of
care.45 In the present study, 66 (37.5%) family caregivers
were assisted by a foreign worker, and only two (1.1%) had
assistance from a Taiwanese worker. These percentages are
lower than those in a previous report, which stated that 18.7%
to 60% of US family caregivers of patients with dementia
hired foreign workers.46 Hiring paid helpers, especially
female foreign workers from Southeast Asian countries, is
one way for caregivers to meet the care needs of disabled
family members in Taiwan.44
Our study findings have several implications for clinical
practice and policy making. First, different services and
interventions need to be designed for families of patients
with dementia according to their specific needs at
different stages of dementia. For example, community services
should be available to help patients with mild dementia with
transportation and housekeeping. For patients with moderate
to severe dementia, services and devices are needed to help
family caregivers protect patients and assist with mobility,
such as in-home helpers, night helpers, and safety-monitoring
devices. For patients with severe dementia, more intensive
help should be considered to provide personal care.
Second, support and consultation programs need to be
provided for family caregivers of patients with dementia at
all stages, since these caregivers are all less than optimally
prepared regardless of dementia stage. In particular,
consultations should address how to make care activities pleasant for
both caregivers and patients, as well as how to get help and
information from health care systems. Last, attention needs
to be paid to the high percentage of hired foreign helpers.
The language and knowledge/skills of foreign helpers with
regard to taking care of patients with dementia need to be
assessed, with training offered, if necessary, so that quality
care can be provided to elderly persons with dementia.
Huei-Ling Huang was responsible for study concept and
The generalizability of our study results are somewhat
design, instrument development, data entry and analysis,
limited by using a convenience sample. The impact of
interpretation of data, and preparation of the manuscript.
this sampling, however, may have been minimized by
Yea-Ing L Shyu was responsible for study concept and design,
the similarity between the profiles of our sample and the
interpretation of data, and preparation of the manuscript.
Minsample from an earlier study of family caregivers of patients
Chi Chen was involved in analysis and interpretation of the
with dementia in Taiwan.47–49 This similarity adds to our
data analysis and preparation of the manuscript. Chin-Chang
study’s credibility and improves the generalizability of the
Huang, Hung-Chou Kuo, Sien-Tsong Chen, and Wen-Chuin
results. A second limitation is that we did not measure the
Hsu were involved in recruitment of subjects, data collection,
exact time spent on each caregiving activity, preventing
and preparation of the manuscript.
a precise estimation of the amount of caregiving
activities. A third limitation was the limited range of dementia
stages. Pre-dementia, very severe, and terminal stages of
dementia were not assessed, limiting understanding of the
role-implementation experiences of family caregivers
taking care of elderly persons with dementia at these stages.
To illuminate these phenomena, future studies should use
random sampling to represent all families of patients with
dementia at all stages and to obtain a more comprehensive
assessment of care activities.
Despite its limitations, this study expands the results
of previous studies on family caregivers of elderly persons
with dementia by describing caregivers’ role-implementation
experiences at different stages of dementia in Taiwan. This
information can provide a knowledge base for developing
community-based, long-term care services to support families
of elderly persons with dementia and serves as a guide for
developing interventions and future studies. As the
population of Asian elders is rapidly growing in Western countries,
this study’s results may be applicable to other countries
wherein health care providers have to take into account the
needs of Chinese/Taiwanese immigrants.
We would like to thank the nurses and doctors in the
neurological clinics of Chang Gung Memorial Hospital for
referring participants in this study. We would also like to
thank Professors Patricia G Archbold and Barbara J Stewart
for their assistance in developing the instruments, designing
the study, and providing insight during the research process.
A special thanks to the people with dementia and their
family caregivers for participating in this study. This study was
supported by the National Science Council, Taiwan (NSC
93-2314-B-182-068 and NSC95-2420-H-182-002-KF);
Chang Gung Medical Foundation (CMRPD1B0332);
and Ministry of Education, Republic of China (Taiwan)
The authors report no conflicts of interest in this work.
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