International Psychogeriatrics: page 1 of 10 © International Psychogeriatric Association 2017

doi:10.1017/S1041610217001764

Protective preparation: a process central to family caregivers

of persons with mild cognitive impairment
...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Ching-Lin Wang,1,2 Li-Min Kuo,3,∗ Yi-Chen Chiu,1,4 Hsiu-Li Huang,5

Huei-Ling Huang,6,7 Wen-Chuin Hsu,4,8 Cheng-Hsien Lu,9,10,11,12 Tzu-Hsin Huang,7
Shan Huang13 and Yea-Ing Lotus Shyu1,6,14,15
1
School of Nursing, College of Medicine, Chang Gung University, Taoyuan, Taiwan
2
Department of Nursing, Meiho University, Pingtung, Taiwan
3
Department of Gerontological Health Care, College of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan
4
Chang Gung Dementia Center, Taoyuan, Taiwan
5
Department of Long-Term Care, College of Health Technology, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan
6
Department of Gerontological Care and Management, Chang Gung University of Science and Technology, Taoyuan, Taiwan
7
Department of Nursing, Taoyuan Chang Gung Memorial Hospital, Taoyuan, Taiwan
8
Department of Neurology, Chang Gung Memorial Hospital, Taoyuan, Taiwan
9
Departments of Neurology, Chang Gung Memorial Hospital-Kaohsiung Medical Center, Kaohsiung, Taiwan
10
College of Medicine, Chang Gung University, Kaohsiung, Taiwan
11
Department of Biological Science, National Sun Yat-Sen University, Kaohsiung, Taiwan
12
Departments of Neurology, Xiamen Chang Gung Memorial Hospital, Xiamen, China
13
Department of Management, Kaohsiung Chang Gung Memorial Hospital, Taiwan
14
Department of Nursing, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung, Taiwan
15
Traumatological Division, Department of Orthopedics, Chang Gung Memorial Hospital, Taoyuan, Taiwan

ABSTRACT

Background: To develop a theoretical model explaining the longitudinal changes in the caregiving process for
family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.
Methods: A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-
ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed
at least once every six months. All participants were interviewed in their home. The participants total of 13
family caregivers of persons with MCI.
Results: One core theme emerged: “protective preparation.” This reflected the family caregiving process of
preparation for a further decline in cognitive function, and protection from the impact of low self-esteem,
accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained
three components: ambivalent normalization, vigilant preparation, and protective management.
Conclusions: Interventions to help family caregivers manage the changes in persons with MCI can reduce
caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop
and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

Key words: caregiver preparation, caregiving processes, grounded theory, illness trajectory, persons with MCI

Introduction et al., 2006). Most types of dementia are preceded

by cognitive decline (Lonie et al., 2010); however,
Mild cognitive Impairment (MCI) involves an not all persons with MCI will develop dementia
individual’s cognitive decline greater than expected (Chertkow et al., 2008). The prevalence of MCI
for age-related changes, but does not significantly for people age 65 and older ranges from 3% to
interfere with activities of daily living (Gauthier 19% (Gauthier et al., 2006), suggesting 71,000–
447,000 persons in Taiwan currently have MCI,
and this number could increase to between 170,000
Correspondence should be addressed to: Yea-Ing Lotus Shyu, School of Nursing,
College of Medicine, Chang Gung University, 259 Wenhua 1st Road, Guishan
and 1,080,000 by the year 2031.
District, Taoyuan City 33302, Taiwan. Phone: +886-3-2118800; Fax: +886- In Taiwan, family caregivers occupy a pivotal
3-2118400. Email: yeaing@mail.cgu.edu.tw. Received 3 May 2017; revision role in providing care to family members with
requested 19 Jun 2017; revised version received 4 Aug 2017; accepted 12 Aug
2017.
dementia. Studies on family caregivers of persons
∗
Li-Min Kuo is co-first author who contributed equally to this paper. with MCI are limited; most involve preventing

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 2 C.-L. Wang et al.
or slowing the development of dementia (Burns
and Zaudig, 2002; Gauthier et al., 2006). Twenty
years ago, only 3.5% to 5.9% of persons with
dementia were institutionalized in Taiwan because
family members were the primary caregivers (Liu
et al., 1991; Tiang et al., 1992). Although 20.6%
were institutionalized in 2009 (Taiwan Alzheimer’s
Disease Association, 2010) family members remain
the primary caregivers for persons with dementia
and MCI and the increased prevalence of MCI
will result in an increase in the number of persons
adopting caregiving roles (Alzheimer’s Association,
1998).
Family caregivers experience high caregiver
burden due to managing multiple neurological and
psychiatric symptoms associated with MCI, such as
depression, anxiety, hallucinations, agitation, and
irritability (Rozzini et al., 2007; Di et al., 2010)
and this burden is compounded by supervision
and decision-making responsibilities (Garand et al.,
2005; Adams, 2006). Fifty to eighty-five percent
of patients with MCI have other neurological
symptoms and psychiatric disorders, including
dysphoria, sleep problems, apathy, and appetite
disturbance, which add to caregivers’ distress
(Rozzini et al., 2007; Muangpaisan et al., 2008;
Di Iulio et al., 2010). Marital quality for spouse
caregivers can also be negatively impacted (Lu and
Haase, 2009). Family caregivers of persons with
mild dementia or MCI report frustration, resent-
ment, grief, relational deprivation, and increased
protectiveness (Adams, 2006). When a family
member is newly diagnosed with mild dementia
or MCI, caregivers experience anticipatory grief,
characterized as “putting the pieces of the puzzle
together” (Lu and Haase, 2009). Anticipatory grief
has also been described as “missing the person”
they once knew (Garand et al., 2012).
The family caregiving process in Western
countries may not entirely explain the phenomena
in Taiwan due to differences cultural values.
The kinship system of Taiwanese/Chinese families
is father–son dominated and characterized by
continuity and inclusiveness. In contrast, Western
families are dominated by a husband–wife system,
characterized by discontinuity and exclusiveness
(Hsu, 1971; Hsu, 1978). Unlimited self-sacrifice,
devotion to parents, social orientation, and
interdependence are valued in Chinese culture.
Western cultures value autonomy, independence;
children’s self-sacrifice for the benefit of parents is
not encouraged (Dai and Dimond, 1998).
MCI is an accurate predictor of Alzheimer’s
disease (AD) (Geslani et al., 2005). Like all
chronic diseases the trajectory varies and changes
over time (Corbin and Strauss, 1991) and
caregiving practices could change accordingly.
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Family caregivers of persons with MCI in Taiwan
employ “ambivalent normalization,” which involves
adopting multiple behavioral approaches to adjust
to conflicts and changes in relationships with the
care-receiver (Kuo and Shyu, 2010). However, the
evolution of the caregiver’s role in the context of
the progression of MCI has not been explored.
Therefore, the purpose of this study was to explore
and develop a theoretical model to explain the
longitudinal changes in the caregiving process for
family caregivers of persons with MCI in Taiwan.
Methods
Because the family caregiver’s role for persons
with MCI has not been explored, the purpose of
this study was to examine the caregiving process
over a two-year period in order to understand
the longitudinal changes in the caregiving process
for family caregivers of persons with MCI in
Taiwan. A grounded theory approach (Glaser and
Strauss, 1967) was selected because it allows
one to construct a new theory based on actions
and observations of participants; this approach
allows the researcher to describe the experiences
of the caregivers of persons with MCI, which can
generate new hypotheses and theoretical concepts
to better explain the phenomenon (Glaser, 1978;
Strauss and Corbin, 1990; Glaser, 1992). There
are no related studies or instruments for Taiwan;
therefore, we chose Glaser’s approach (Glaser,
1978; Glaser, 1992), which allows more flexibility
in theorizing as a result of data analysis strategies
and understanding the caregivers’ reality (Heath
and Cowley, 2004).
Participants
Neurologists from neurological clinics of one
northern and one southern medical center in
Taiwan identified families who met the sample
criteria and assessed their willingness to participate.
Inclusion criteria for family caregivers of persons
with MCI (the care-receiver) were: (1) age 20 years
or older, (2) assuming primary care responsibility
for the care-receiver, and (3) the care-receiver met
inclusion criteria. The criteria for care-receivers
were: (1) age 65 years or older, (2) a clinical
dementia rating (CDR) = 0.5 and diagnosed with
MCI by a neurologist or psychiatrist, which was
based on the core clinical criteria for MCI as
recommended by the National Institute on Aging-
Alzheimer’s Association (NIA-AA), and (3) being
cared for in a home setting. In order to be
more open to the possibilities of understanding
the phenomenon of caregiving for persons with
MCI, including the caregiver’s perception of the

overall illness trajectory, we did not have specific
restrictions with regard to subtype of MCI,
comorbidity, or pre-existing conditions; therefore,
there were no exclusion criteria. The researchers
contacted the families and further explained the
study. Interviews were conducted after obtaining
written informed consent from all caregivers and
care-receivers. Approval was obtained from the
Institutional Review Board of the study hospital
(NO102-3346C) prior to beginning the study.
Sampling methods
Grounded theory employs theoretical sampling to
guide data collection. This is a process based
on concepts that become relevant as the theory
evolves, and maximizes opportunities to discover
variations among concepts and to generate as many
properties of the categories as possible (Strauss
and Corbin, 1998). Demographics, cognitive
functioning, and behavioral problems described the
sample and provided a reference for theoretical
sampling. Emergent theory guided whom to sample
(Glaser, 1978; Glaser, 1992). During early data
analysis, the process of protective preparation
emerged and the relationship of the family caregiver
and the person with MCI, such as child and spouse
was a possible concept that influenced the process,
thus we decided to include family caregivers with
different relationships to the persons with MCI.
The concept of “vigilant preparation” emerged
from a preliminary study on family caregivers
of persons with MCI (Kuo and Shyu, 2010).
Therefore, we selected family caregivers who
looked for signs and symptoms of cognitive and
behavioral changes, while simultaneously expecting
a further decline in cognitive function, and those
who seemed to “wait and see” for comparison. The
sampling process ceased once theoretical saturation
was reached, which occurred when no new data
appeared and the properties of the theory’s con-
cepts and incidents were well-developed (Glaser,
1978; Glaser, 1992). Theoretical saturation was
determined by a consensus decision of the research
team.
Interview guide
Face-to-face interviews were conducted using an
open-ended interview guide (Table 1) modified
from a previous study (Kuo and Shyu, 2010).
The guide was refined based on theoretical
sampling of evolving concepts during the interviews
(Glaser, 1978; Glaser, 1992). For example, when
protective preparation emerged from the data,
subsequent interviews focused on family caregivers’
descriptions of a possible further decline in the
care-receiver’s cognitive functions.
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Family caregivers of persons with MCI 3
Table 1. Interview guide
1. When did you discover changes in your family
member?
2. How did you interpret those changes in the family
member?
3. What strategies did you use to handle these changes?
4. What were your reasons for bringing your family
member to see a doctor or seek help?
5. Can you compare your relationship with the family
member before and after you sought medical
treatment for the patient’s condition?
6. Did his/her condition have an impact on your daily
thoughts, on other family members or on your family
life?
Interview procedure
Interviews were conducted one month following
the diagnosis of MCI (baseline), then at approx-
imately six month intervals for two years in the
home of the caregiver and lasted between 30 and
100 minutes. Participants were instructed to make
themselves comfortable and told there was no
right or wrong answer to the questions. Of the
13 caregivers, nine participants completed all four
interviews, one died before the fourth interview,
and three dropped-out after the first interview.
After the core concept emerged, the interviews
became focused on experiences related to the
caregiving process of “protective preparation.”
During the interviews, the interviewer maintained
written field notes related to thoughts, as well
as observations that captured the interviewer’s
interest, such as signs of depression or anxiety,
as well as comments that occurred spontaneously.
In addition, the cognitive function of the person
with MCI was noted as well as any indication
of the caregiver’s perception of the disease pro-
gression. To avoid interfering with the caregiving
interactions, observational notes were used instead
of videotaping. After participant 11 had been
interviewed four times, it was determined that data
saturation had been reached (Strauss and Corbin,
1998; Heath and Cowley, 2004) regarding the core
concept of “protective preparation.” Recruiting
new participants ceased after conducting additional
interviews with three of the 13 participants to
confirm that sufficient information had been
obtained regarding the properties of the core
category and additional data was redundant.
Data analysis
Interviews were audio-recorded and transcribed
verbatim. We used open coding for detailed line-
by-line analysis to develop categories and establish
tentative relationships among categories (Strauss
 4 C.-L. Wang et al.

and Corbin, 1998; Heath and Cowley, 2004). Table 2. Demographic characteristics of family
The coding families provide different potential caregivers of persons with mild cognitive impairment
schematics of the theory for the connections (N = 13)
among the categories (Glaser, 1978). Constant
characteristic N(%) mean (SD)
comparative analysis reformulated the focus of ........................................................................................................................................................
the data to reflect emerging concepts. Theoretical Gender, % (n)
coding identified the relationship between concepts Male 7 (53.8)
throughout the data analysis (Strauss and Corbin, Female 6 (46.2)
1998; Heath and Cowley, 2004). During the coding Age at beginning of study, years 58.5 (14.2)
process memo writing, data collection, coding, Relationship to family member
and categorizing were conducted concurrently to Spouse 6 (46.1)
record thoughts and ideas regarding the core Son 3 (23.1)
category (Glaser, 1978). During research meetings, Daughter 3 (23.1)
Daughter-in-law 1 (7.7)
patterns in the transcripts, codes, and memos
Employed an in-home assistant, 5 (38.5)
were explored. After analyzing and discussing n (%)
data from participant 11, the research team
reached the consensus about the potential core SD, standard deviation.
concept of “protective preparation,” which was
and further verified in subsequent data analysis.
knowledgeable participants to validate and clarify
To avoid preconceived concepts, coding families
the interview data. These participants provided
(Glaser, 1978) provided different perspectives for
feedback and enriched the information regarding
theory formulation, and categories of the theory,
the phenomena.
which guided the theoretical coding, and a core
category identified the central concept around
which all other categories were integrated (Strauss
and Corbin, 2008). Once the core category Findings
of “protective preparation” emerged, incidents Study participants
relating to “protective preparation” were analyzed
Fourteen family caregivers were approached and
by selective coding to enrich and verify the core
13 (92.8%) agreed to participate. The gender of
category [(Glaser, 1978; Glaser, 1992).
caregivers was 42.6% female and 53.8% male;
additional characteristics are shown in Table 2.
Trustworthiness of the data Characteristics of the care-receivers with MCI
are shown in Table 3. The average of age was
The criteria of Lincoln and Guba (1985) es-
73.3 years, six were female and seven were
tablished trustworthiness. Transcribing interviews
male. The average time since diagnoses of MCI
verbatim, peer debriefing, and audit trails enhanced
was 25.6 months and 76.9% had comorbidities,
credibility of the data. Four experts in geron-
which included hypertension (4), heart disease (1)
tological nursing and two experts in qualitative
Parkinson’s disease (2), diabetes mellitus (2), and
methods met monthly to review the fit of the raw
stroke (1).
data, codes, categories, and emergent core categor-
ies; these researchers’ positions, assumptions, and
preconceptions of the topics and potential biases Protective preparation
that could influence the research process were The core process central to the role of family
declared to other members of the team in order to caregiver for a person with MCI was protective
consciously allow more flexibility and an open mind preparation. The process of protective preparation
during data collection and analysis. Reviewing incorporated three distinct components, which oc-
transcripts and codes by the researchers ensured curred simultaneously and interactively: ambivalent
conformability of the data. Transferability was normalization, vigilant preparation, and protective
enhanced by rich description and conceptualization management. There were no predictable sequences
of contextual conditions of the phenomena, or phases among these three components, although
maintained by the first author as field notes. ambivalent normalization was most likely to occur
Prolonged engagement with the caregivers over after the initial diagnosis of MCI and remain with
two years allowed the researcher to establish close the other components during the entire process
relationships, thus participants were more willing of protective preparation. One example of the
to express their feelings and experiences. Member three components occurring simultaneously was
checks (Lincoln and Guba, 1985) were conducted exhibited by a son who cared for his mother. He
with three of the most thoughtful, reflective, and said:

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 Family caregivers of persons with MCI 5

Table 3. Demographic and clinical characteristics of family care receivers

with mild cognitive impairment (N = 13)
va r i a b l e mean (SD) N(%)
......................................................................................................................................................................................................................

Demographic characteristics
Gender
Male 7 (53.8)
Female 6 (46.2)
Age at initiation of study, years 73.3 (7.17) 6 (46.2)
Clinical characteristics at recruitment
Time since diagnosis of MCI, months 25.6 (18.15)
Type of MCI
Mixed type 3 (23.1)
Amnesic type 10 (76.9)
Care-receivers with comorbidities 10 (76.9)
Number of comorbidities
1 2 (15.4)
2 4 (30.8)
>2 4 (30.8)

SD, standard deviation; MCI, mild cognitive impairment.

Her brain has slightly shrunk...I think that you for a possible decline in cognitive function if the
cannot control the shrinking of her brain, just go care-receiver became more incapacitated. One son-
along with nature [ambivalent normalization]... Both caregiver said of his mother:
my wife and I are prepared [vigilant preparation], but
still feel really sad about her condition.... I am okay
... she is already 90 years old, compared to other
right now to take care of her, but after a couple years, older people, we are glad that we do not need to take
when I get old myself, I would need to ask my brother
too much care of her, she can do most of the things
to hire someone to help [protective management].
herself… It is a must, we must be prepared, we do not
know when she will get (worse)...”
A second example occurred when a wife
caregiver noticed a significant decline in her This response was typical of many caregivers
husband’s cognitive function, which was confirmed in our study; they did not view the care-receiver’s
by his medical record. The wife said: condition as problematic. Another son-caregiver
said of his father:
I am worried that his condition will get worse;
some people will gradually get worse [ambivalent His memory is not as good, but it has nothing to do
normalization]. I think providing stimulation to with dementia, it’s not that severe. We are not worried.
him is very important and necessary [vigilant
preparation]...My daughter lives in LA (USA) and she
is a nurse. She told me that there were stages for
The degree of ambivalence regarding normal
dementia. If some day, he will not be able to recognize behavior was correlated with the caregiver’s
me, I will send him to the nursing home [protective perception and interpretation of the cognitive
management]. impairment of the care-receiver. The ambivalence
about normality changed if the care-receiver
exhibited a decline in cognition and functional
Component 1: Ambivalent normalization
abilities. In later interviews, caregivers became less
The feelings a caregiver experiences when at- ambivalent about normalcy and more certain the
tempting to accept and rationalize the care- care-receiver was exhibiting symptoms of MCI,
receiver as normal is defined as “ambivalent not behaviors related to aging. This resulted in an
normalization,” which occurs when the family increase in the caregiver’s level of worry, concern,
member is initially diagnosed with MCI (Kuo and a change in interactions and interventions with
and Shyu, 2010). Caregivers entered into this the person with MCI. One daughter caregiver said:
process when confronted by behavioral changes in
the family member with MCI. During the initial In the beginning, we found that she was very
interviews at one month, caregivers maintained the suspicious and emotionally unstable… My father
belief that cognitive decline was “a normal aging already died, but she thought he would come back...
phenomenon,” but also endeavored to prepare so we took her to see the doctor. Doctor told us that

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 6 C.-L. Wang et al.
her cognitive impairment is mild.... I am still worried
that she will get lost, so we keep her company when
she goes out.
When a care-receiver had not undergone a
significant change in behavior over the course of
the study, caregivers continued to apply ambivalent
normalization.
Component 2: Vigilant preparation
The process of vigilant preparation occurred
when caregivers recognized the person with MCI
was having functional difficulties. They began to
look for signs and symptoms of cognitive and
behavioral changes, while simultaneously expecting
a further decline in the cognitive functions of the
care-receiver. Two forms of vigilant preparation
were employed: reactive and perspective. Reactive
vigilant preparation was the process of caregivers
adopting an attitude of “wait and see.” Although
these participants were alert for signs and
symptoms of cognitive decline, they did not have
a plan for what they would do when the eventual
change occurred. For example, one daughter
caregiver said of her father:
His condition remains the same, I think that is
wonderful...I am still worried that if the disease get
worse, one day he might not able to take care of
himself and cannot recognize us… we do not have any
plan so far, because the time has not come.
Another daughter-caregiver said of her father:
The things are fine now.... I think we would make
some decisions when the time arrives… I would not
think what we would do or predict what would happen.
Not yet, not there yet... I hope that he can be really
stable and not keep deteriorating.
In contrast, perspective vigilant preparation incor-
porated specific plans for the future. Participants
planned ahead. One wife planned a trip to the USA
with her husband, while he could still recognize
his daughter and grandson. Another wife-caregiver
acknowledged her husband would need a nursing
home when he could no longer feed himself. At
seven months, one daughter stated:
Also, I think I need to let her wear an identity
bracelet, in case she goes out by herself and gets lost.
If it will happen, it will happen. I need to be prepared.
If her condition gets worse, I will need to find an aide
to take care of her with me, or send her to a nursing
home.
For others, perspective vigilant preparation did
not begin until later. One son-caregiver adopted
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this strategy, which he shared during the interview
at 24 months:
I know that her cognitive function is declining and
she becomes forgetful. Sometimes I tried to explain
things to her, but we ended up having an argument,
she gets really mad. It might get worse. I should do
exactly what the doctor said to slow down the speed of
decline. I need to be prepared in advance.
As the disease progressed, some participants
exhibited signs of anxiety or worry. Perspective
vigilant preparation helped them to cope with their
concern about their family member with MCI.
This is exemplified by a description from one son-
caregiver as follows:
Her memory is gradually getting worse, I am
very worried...,so I told her that if there are no
important things to do, don’t go out by yourself riding
a motorbike, you might forget how to get back. I
cancelled her motorcycle license.
Component 3: Protective management
Participants employed protective management of
care-receivers’ self-esteem, safety, symptom control
(pain management and medication adjustment),
and cognitive maintenance, which was an on-going
process that continued throughout the duration of
the study. As the disease progressed and cognitive
functioning declined, this process became more
complex. In the initial interview at 1 month, a son-
caregiver protected his mother by not telling her
neurologist that she overpaid for a store purchase:
I did not tell the doctor yet. If you say things like
this in front of her, she would know and get mad. I
am afraid that she would get angry... I just comfort her
and say it is ok, not a big deal.
During an interview at seven months a wife-
caregiver told about protecting her husband’s self-
esteem, which concerned her because his physical
function had declined. She said:
He really cares if people laugh at him or think he
is useless, so I told my daughters that they have to be
very careful when talking to Dad, he is very sensitive
now...
Safety protection was most frequently used
and focused on accident prevention, which many
caregivers considered their most important task.
One wife-caregiver cancelled her husband’s driver’s
license, and another followed her husband to
prevent him from getting lost. One son-caregiver
said:

Safety is very important, we have to watch out and
prevent him from falling down, need to watch out
using the stove too….(interview at 13 months)
Symptom control required pain management
and medication adjustment because of care-
receivers’ comorbidities. At seven months, a wife
complained of headaches and worms under her
scalp. The husband-caregiver said:
I put some ointment on to make her feel better, I
have to do it probably 5 to 6 times a day, but it (relief)
did not last more than one hour. Not long after, she
would start again…
Comorbidities required medication adjustment,
monitoring and managing medications, and aware-
ness of contraindications. One wife’s husband also
had Parkinson disease. During the last interview
(24 months) he said:
One time we gave him Chinese medicine to control
his symptoms. The doctor got really mad saying there
might be an interaction between the Chinese medicine
and the medicine he prescribed… so we did not dare
to give him the Chinese medicine anymore.
Caregivers maintained cognitive functions by
providing stimulating activities, which began soon
after the diagnosis of MCI. One son-caregiver said:
Her grandson plays with her often…. I show her
pictures on the computer, or find some Japanese songs
for her. To keep her busy, so she would not decline too
fast. (First interview)
A husband-caregiver said:
Whenever I go to the farm, I would ask her to come
along...If I go shopping for food, I asked her to come
along. This way, she can get more exercise, and her
brain is active. (First interview)
Ambivalent normalization, vigilant preparation,
and protective management occurred simultan-
eously and interactively. When caregivers were
more ambivalent in normalization, they planned
and prepared for further decline, and utilized
more protective management strategies during
daily activities for the care-receiver. In contrast, less
ambivalent caregivers tended to wait and see, used
reactive vigilant preparation, and implemented less
protective management.
Illness trajectory of MCI as a contextual
variable
Perception of the illness trajectory of MCI was
an important contextual variable for participants.
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Family caregivers of persons with MCI 7
When caregivers had no perception of diminishing
cognitive impairment or daily functioning, vigilance
about caregiving and management needs was less.
At two years, during the last interview, a daughter’s
mother had not changed since the study began. She
said:
I think she is quite stable...she can still cook, so we
do not discuss or think about her future condition…
She does not get lost; she remembers to turn off the
fire on the stove. … We trust her and would not
feel anxious. Her daily living can go on without any
assistance. Everything is ok now.
On the other hand, if, over time, there was an ob-
vious progression in neurological and psychological
symptoms of MCI, caregivers employed greater
vigilance and protective management. During the
initial interview, one son-caregiver said:
She is better, she is quite clear at times, but
sometimes she is forgetful, sometimes is quite clear.
However, the interview conducted 24-months
later revealed the son’s mother had exhibited an
increased loss of physical and mental abilities, but
was also extremely irritable as a result of Dengue
fever, which made her more difficult to manage.
The son modified his vigilance and protective
management; both increased. He also expressed
sadness and concern about his mother’s future. The
son explained:
She would not sleep all night, she seemed like a
crazy person. She took off her clothes and wanted to
run out, very scary …. her condition is getting worse,
my wife and I are prepared…We think that we need
to be patient, if she scolds us or gets angry, we need
to accept it. Sometimes I feel very sad, why does
she become like this? Just thinking about what she
could be like someday makes me really sad. We cannot
leave her alone. My brother and I are discussing that
perhaps we need to hire an aide to help in the near
future.
The process of protective preparation was
influenced by the caregiver’s interpretation of
the family member’s illness trajectory regarding
cognitive function, overall condition, and whether
the decline was irreversible.
Discussion
This longitudinal examination of the caregiving
process for persons with MCI was an expansion
of a prior cross-sectional study (Kuo and Shyu,
2010), which focused on the concept of ambivalent
normalization during the initial diagnosis of MCI.
 8 C.-L. Wang et al.
The current longitudinal study captured the
caregiving experiences of the participants over a
two-year period. Interviews revealed that although
ambivalent normalization continued to be an
important component of caregiving, “protective
preparation” emerged as a more comprehensive
concept of the phenomena over time. Family
caregivers protected their family member by
preparing for and/or trying to prevent a further
decline resulting from MCI. The illness trajectory
of MCI resulted in a concomitant change in
variability in ambivalent normalization according
to the family caregiver’s perception of the illness
trajectory. These findings provide a more complete
picture of this phenomenon by illustrating the
changing and dynamic nature of the family
caregiving process for persons with MCI.
Protecting the care-receiver from the impact
of low self-esteem, accidents, symptoms of MCI,
and co-morbidities involved three components:
ambivalent normalization, vigilant preparation,
and protective management. If the care-receiver’s
cognitive and functional abilities remained stable,
ambivalent normalization continued, which con-
sisted of “putting the pieces of the puzzle together”
and “taking charge of care” (Lu and Haase, 2009).
Over the course of the interviews, some caregivers
expressed sadness and worry about the changes in
the family member’s behavior and concern about
their future, which is similar to anticipatory grief
described previously for caregivers of persons with
MCI (Garand et al., 2012). If the care-receiver’s
symptoms changed over the ensuing months,
family caregivers incorporated vigilant preparation
to monitor cognitive decline while simultaneously
preparing for further decline in the future.
For family caregivers of persons with MCI in
Western cultures the central process is described
as increased protectiveness, which incorporates in-
creased decision-making and supervision (Adams,
2006). The process for Taiwan family caregivers
in this study identified the core concept as
protective preparation, which not only involved
increased decision-making (protective manage-
ment) and supervision (vigilant preparation), but
also the emotional involvement of ambivalent
normalization. Our findings also identified the
cultural norm of filial piety as an important
component for family caregivers. Traditionally,
children are responsible for the care of their aging
parents in ethnic Chinese societies, which focuses
on interdependence, in contrast to the values
of autonomy and independence seen in Western
cultures (Dai and Dimond, 1998).
The stages and severity of the illness trajectory
of dementia are factors influencing the coping and
well-being of family caregivers (Berger et al., 2005;
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https://www.cambridge.org/core/terms. https://doi.org/10.1017/S1041610217001764
Huang et al., 2015). A relationship between the
illness trajectory of the early stages of dementia and
the caregiving experience has been demonstrated
for Taiwanese caregivers (Berger et al., 2005);
however, the study did not include persons with
MCI. Our findings showed the illness trajectory
of the care-receivers influenced the caregiving
process of protective preparation. Caregivers were
less ambivalent in their normalization when the
care-receiver’s condition was stable. In contrast,
caregivers of a family member with a decline
in cognitive function were more ambivalent in
their normalization, taking a perspective of vigilant
preparation, and implementing more protective
management strategies. Innovative intervention
programs are important in dementia care (Chao
et al., 2016). Therefore, the findings of this study
could provide a basis for development of innovative
programs during the initial stages of dementia,
which could reduce the burden of family caregivers
for persons with MCI.
Limitations
Our study has some limitations. The number
of participants was small and the results can
only be applied to family caregivers in Taiwan.
The participants were recruited from clinics that
treat persons with MCI, which may bias the
sample toward those caregivers actively seeking
healthcare for their family member and may not
be representative of the general population. Future
studies from different settings are suggested to
enhance the transferability of the data.
Implications
The process of “protective preparation” provides
a knowledge base for developing effective in-
terventions and facilitating high quality family
care. The transition from MCI to dementia
is neither inevitable nor predictable; therefore,
interventions to help family caregivers monitor
symptoms of cognitive decline are encouraged.
Providing caregivers with information regarding
available support, consultations, and interventions
could be individualized according to the caregiver’s
perception of the illness trajectory. Information
technology and improved environmental devices
could enhance protection strategies available to
family caregivers and reduce caregiver burden.
This model may be applicable for understanding
and facilitating family caregiving for persons
with MCI in Chinese/Taiwanese communities and

home settings as well as for immigrants with
Chinese/Taiwanese cultural backgrounds.
Conflicts of interest
None.
Description of authors’ roles
YILS was responsible for study design, obtaining
funding, data analysis, drafting, and completion of
the manuscript. LMK, and CLW were all involved
in data collection, analysis, and completion of the
manuscript. YCC, HLH, and HLH were involved
in analysis and interpretation of data. WCH,
CHL, THH, and SH contributed in acquisition of
data.
Acknowledgments
The authors are grateful to all respondents
who participated in this study. This work was
supported by the Ministry of Science and Tech-
nologygrant number NSC102-2314-B-182-051-
MY3, Chang Gung Medical Foundation (grant
number BMRP297) and Healthy Aging Research
Center, Chang Gung University, Taiwan (grant
number EMRPD1G0211).
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