Examination of Caregiver Stress

Running head:AN OVERVIEW ON HOW DEMENTIA
1
An Overview on how Dementia Affects Caregiver Wellbeing
Stacy Sellner
Texas A&M University, San Antonio

DEMENTIA AND CAREGIVER WELLBEING 2
An Overview on how Dementia Affects Caregiver Wellbeing
There have been an increasing amount of articles written on dementia and its affects not
only on those who are affected but also the caregiver as well. Frequently, spouses or adult
children look after their loved ones with dementia to make sure they are receiving the proper
support. Most often, the caregivers provide support out of their own homes and spend over 40
hours on direct care for their loved ones with dementia (Epstein-Lubow, Duncan Davis, Miller,
& Tremont, 2008, p. 198). Caregiver burden is affected my multiple facets and studies suggest
that some of the more influential factors are not the objective problems a caregiver would face,
but their subjective reality, or how the caregiver feels about the position they are in, and how the
caregiver chooses to respond to those factors (Campbell et al., 2008, 1082). Moreover, the
literature identifies that there are coping strategies that help to reduce caregiver burden as well as
coping strategies that increase caregiver burden (Dulin&Dominy, 2008, 56). There is some
research to support that the behavior of the care recipient plays a role in the negative outcomes of
the caregiver which included a combination of issues to include supervising those with dementia
and having difficulties with their cognitive problems, personality changes, limited attention, and
behavioral and emotional difficulties (Dulin&Dominy, 2008, 56); there is also research that
refutes that the behavior of the personwith dementia plays a significant enough role in the
emotional outcome of the caregiver (Campbell et al., 2008, 1081). Although there are
discrepancies on what affects caregiver outcomes, one of the commonalities seen in the literature
is that the subjective nature of the relationship of the caregiver and recipient plays a larger role in
caregiver outcomes than does the objective nature.

Description of the Problem
Dementia is far more prevalent in our society than it ever has been before. The United
States life expectancy is gradually increasing because of improvement of our modern medicine.
The United States census showed that in 2007 that 5.1 million American’s have dementia with an
average of 10.4 million caregivers. This number is expected to increase to 13.2 million in less
than 40 years (Tremont, Duncan Davis, Bishop &Fortinsky, 2008, p. 504). This is a large
increase of people with dementia; with increasing numbers of people with dementia, there is an
equally increasing number of those who care for their loved ones with dementia which can be
difficult for the caregiver. As stated previously, caregivers will often bring their loved one with
dementia by moving them in with them and spend nearly 40 hours of their time in direct care
(Epstein-Lubow et al., 2008, p. 198). If one spends this considerable amount of time caring for a
care recipient with dementia, it would be difficult to also work a full time job to support their
family. It is noted that with time, the burden of the accumulated financial, social, and
psychological affects take their toll on a caregiver (Gaugler, Roth, Haley &Mittelman, 2008, p.
421). It is expensive to take care of another adult, particularly when it may limit the amount of
income one may bring in due to time constraints. Coping with the changes that comes about with
dementia is also difficult. Because of these added stressors, caregivers are more likely to have
depressive symptoms than the general population as well as one third of caregivers will
experience a major depressive episode (Epstein-Lubow et al., 2008, p. 198). Moreover, the
increased amount of stress can also lead to an increase of physical health problems, or death
(Tremont et al., 2008, p. 504). Considering all of the ill effects than can occur while caring with
someone with dementia, it is important to find out if interventions would work with this
population to avoid all of the negative consequences.

Significance of the Problem
Considering the growing population of those with dementia there has been increased
attention on what we can do to “avoid” getting dementia. It is stated that the prevalence of
dementia increases dramatically from the age of 65, and by 85 years of age 42 percent of people
will have dementia (Tremont et al., 2008, p. 504). The baby boomers born in the 1940’s-1960’s
will be reaching 85 years old in the 2030’s leading to the projected 13.2 million people that will
have dementia by 2050. Not only will it affect the 13.2 million people, but using the 2:1 ratio of
caregivers to care recipients it will also affect 26.4 million caregivers, which means it will affect
nearly 40 million people in 40 years. Depression not only affects caregivers, but those with
dementia themselves with nearly a third of people being affected (Stroud, Steiner&Iwaugwu,
2008, 2008). Because depression also can lead to an increased risk of comorbid medical
problems, it would be wise to find interventions that will limit the amount of depression
experienced. With the increased amount of people who will be affected with depression due to
dementia, it is important to increase the amount of resources, whether it be support groups,
counseling, or tele-counseling as depressed caregivers need more support than those who are not
depressed (Nichols et al., 2009, 11). It was also been shown that counseling and support has had
a clinically significant effect on depressive symptoms for those caregivers experiencing
depression. (Gaugler et al., 2008, p. 426). Moreover, not only does the depression affect the
caregiver, but it also has been associated with poor care recipient outcome (Campbell et al.,
2008, 1078).
Research Questions
In order to provide the best support to those who are suffering from depression due to the
effects of caregiving for those with dementia, it is important to determine what aspects of

caregiving is attributing to the depression. Once it can be determined what conditions are causing
the depression, the best method of addressing these issues can be looked at. With this, multiple
studies can be done to determinewhat interventions work best for people dealing with these
stressors.Although there are many other questions that can be posed about this situation, there
have been gaps in the literature that cannot be addressed in this review. Questions that can be
asked are:
 What are commonalities of those suffering from depression due to stress related to
caregiving?
 What are some good practices of dealing with caretaking to reduce caregiver burden?
 What practices of caregivers are more likely to lead to developing depressive symptoms?
 What treatments are best for caretakers in order to remediate symptoms?
 Are counseling groups just as effective as individual counseling?
 If a family seeks treatment in the earlier stages of dementia is there a better outcome than
those who seek treatment in later stages of the disease?
 Can early treatment stifle the emergence of depressive symptoms in caregivers?
Review of Literature
In one study by Campbell et al. (2008) the focus of the research was trying to determine
what facets of caregiving produced the highest amount of caregiver burden. Some of the facts the
study investigated was the relationship between the caregiver and care recipient, the care
recipient’s cognitive behavior, their behavioral and psychological symptoms, caregiver gender,
the experience of adverse life events and caregiver role captivity (among others) were studied
(Campbell et al. 2008, 1078). The literature discussed maladaptive emotional coping as
problematic to the outcome of the caregiver as well as points to the fact that when caregivers are

given an intervention, only moderate success is expected (Campbell et al. 2008, 1078). Their
findings showed that the greatest amount of burden was noted with the greater level of “role
captivity”; the “role captivity” is described as the caregivers feelings as being trapped in the
relationship of being a caregiver as well as an erosion of the sense of self, or a loss in identity.
This later leads to a resentment towards the care recipient, which affects the caregiver
relationship; moreover, the lack of, or a negative a caregiver relationship is also the fourth
highest predictor of burden in caregivers. The second and third highest predictors are caregiver
overload and adverse life events outside of the caregiver role (Campbell et al., 2008, 1082).
Interestingly enough, not once did any of the clinically significant factors influencing the
negative outcome for caregivers, were related in total by the care recipient’s mood, cognitive
ability, or physical ability. In summary, the study supports that it is not the objective load on the
caregiver, but the intricacies of how the caregiver subjectively sees their role in regards to how
“stuck” they are in the role, their relationship with the care recipient, how busy they are, as well
as the negative life events they have experienced (Campbell et al., 2008, 1083).
Gallagher et al. (2011) also investigated which strategies are best suited for positive
outcomes for caregivers’ emotional outcomes. Their personality and coping strategies were
reviewed as problem-focused coping strategies and have been previously noted as being
beneficial to reduce caregiver burden (Gallagher et al., 2011, 663). They found that the incidence
of depression was about 33% as they expected to find and found that self-efficacy (as described
as a person’s viewed ability to successfully complete a task) for symptom management, their
community support, and having enough funds for the care was negatively correlated with burden
and depression of the caregivers (Gallagher et al., 2011, 667). Strategies like using humor,
having emotional support, acceptance, positive reframing, and religious coping was also found to

show reduced depression in caregivers whereas dysfunctional coping, neuroticism in the
caretaker, and a negative response to demands was shown as a predictor of burden and
depression. (Gallaher et al, 2011, 668).
Another study that parallels the issue of “role captivity” was a study conducted by Lilly,
Robinson, Holtzman, and Bottorff (2011). Although these caregivers were committed to their
roles, they explained their frustration when feeling like what they were doing was being taken for
granted by either their family, healthcare providers, or the care recipient themselves. (Lilly et al.,
2011, 106). Frequently, the relationship between how caregivers respond to additional assistance
(in the form of a day care environment for their loved one with dementia) is analyzed. Some
participants in the study stated that because paid supportive services were too problematic that
they turned to private adult day care to try to alleviate some of the demand on them. Some issues
that the caregivers reported about enrolling into private adult daycare was that the cost to enroll
was too high or that the care recipient was not accepted into the day care because they exhibited
a higher functioning level or they did not meet a minimum age requirement. (Lilly et al., 2011,
107). Another study on the whether there are benefits of adult day care is a study conducted by
Mossello et al. (2008) which states that daycare may be a better option than institutionalization
of a person with dementia as the decrease in direct care hours would decrease caregiver burden
(Mossello et al., 2008, 1066). Although they did find that the adult day care did indeed
statistically reduce caregiver burden, there was no clinically significant difference in depression
levels with the use of the daycare. An intersting finding is that they did find that there was a
positive outcome for the care recipient’s themselves, which could be because of the increased
socialization. (Mossello et al., 2008, 1071). These studies indicate that although day care is
alluring to caregivers because they think this will reduce their stress level and depression, there is

no clinical significance to support this which may further support the previous notion that it is
not the objective reality that causes caregiver burden but rather the way the caregivers are
viewing the situation.
Most of the literature focuses on the negative consequences of caregiving; the study
published by Dulin and Dominy (2008) are one of the few studies focused on the positive aspects
of caregiving. This study is a little different than the previous study done by Campbell et al.,
2008, as it states there is research that supports that problematic behavior of the care recipient is
associated with negative outcomes of the caregiver (Dulin & Dominy, 2008, 55). The article
states that caregiving can have a positive impact on the mood of some caregivers as it is
associated with enhanced personal meaning and is particularly helpful in those with prosocial
and helping behavior; this is particularly true with older adults who are usually the caretakers of
a person with dementia. The article also mentioned, like the one previously discussed, that
‘emotion focused’ coping strategies predict a negative outcome of caregivers; these coping
strategies include denial or avoidant behaviors (Dulin & Dominy, 2008, 56). It further states that
of the facets they tested, that wishful thinking was the most important predictor of a negative
affect (Dulin & Dominy, 2008, 56). On the opposite spectrum, having a positive outlook through
use of a problem-solving orientation with positive appraisal and perceived control, caregivers
were more likely to have a positive mood. These positive emotions can stifle depression and
enhance recovery from stressors. Helping attitudes showed to be the best predictor of a positive
outcome of the facets that were measured in the study. The implications state that a solution to
help those who are struggling with the caregiver role could be to have them visualize their role as
meaningful and beneficial (Dulin & Dominy, 2008, 56).

One study that was reviewed asks caregivers what they support that they feel they need is
conducted by Nichols et al., (2009). The intention of the study was to help create programs
tailored to the needs and wants of a caregiver (Nichols et al., 2009, 3). During the intervention
portion of the study, the caregivers were assigned to a trained health interventionist to teach them
how to manage the dementia patient's behavior plus management on how to deal with their own
stress. During the sessions, the caregiver was able to identify the issues they felt concerned them
most to include a topic on “behavior” and a topic on “stress and coping” (Nichols et al., 2009, 4).
The most requested behavioral topics the caregivers selected included topics meant to address
the behavior of the care recipients which included activities, combativeness, communication,
confusion, eating, and incontinence. There were few topics to address the caregivers’ needs
which included their feelings, depression, sexuality, and holidays; most caregivers did not select
these topics to discuss, moreover two of these topics were the least requested topics of the 25
topics they could chose from (Nichols et al., 2009, 5). Of the stress and coping topics, the four
most frequently chosen topics (that were around three-quarters of the topics selected) were about
healthy lifestyle, grief, relaxation, and depression. Five percent of caregivers selected problems
solving and positive thinking as a topic in these sessions with problem solving being the least
requested concern of the caregivers (Nichols et al, 2009, 8).
Gaugler et al. (2008) investigated whether long term counseling and support for the
caregiver impacts the depressive symptoms experienced. (Gaugler et al., 2008, 422). Caregiver
participants in the study consisted of people attending individual and family counseling, support
groups, and ad hoc counseling. Counseling would consist of the stated needs of the caregiver,
information on dementia, skills to help manage behavioral problems, and strategies to increase
communication of the family members (to include the family member affected by the dementia).

The literature also suggests that there are less depressive symptoms of those caretakers who
institutionalize the person who they are taking care of (Gaugler et al., 2008, 423). The results
showed that caregivers in the control group who institutionalized earlier showed less burden than
those in the experimental group who did not institutionalize, however once the caregivers in the
experimental group institutionalized, there was a significantly lowered perception of burden than
the control group. The experimental group had less depressive symptoms at the time of
institutionalization than those at the same point in the control group (even though the
institutionalized earlier) as well which means there was a lower incidence of depression at
institutionalization and after institutionalization for those who were receiving treatment. In this
study it supported previous research which states that counseling and support have a lasting
effect on reducing depressive symptoms for caregivers. (Gaugler et al., 2008, 426). An important
aspect of this research to note is that the intervention given focused on education, the stated
needs, and how to manage behavioral problems. In the research cited before, these factors did not
have clinical significance in predicted depressive symptoms. A large portion of the intervention
was focused on caregivers’ needs. If one were to recall the information from the Nichols et al.
(2008) study, the majority of the requests of caregivers were to focus on the behavior of the
person they were taking care of and not their own; when the attention was placed upon the
caregiver the topics most selected were healthy lifestyle, grief, relaxation, and depression with
problem solving being the least requested concern of the caregivers (Nichols et al, 2009, 8). In
previous studies, it suggested that the ability to effectively problem solve was the highest
predictor of having a positive outlook on caregiving which in turn decreases the amount of
depression experienced. If the previous studies about effective problem solving are indeed the

case, there could be some negative implications on the topics that are selected for the counseling
as they may not be the most beneficial to counsel caregivers with.
The study done by Tremont et al. (2008) also examined how psychosocial intervention
via telephonic delivery impacts dementia caregivers. The article suggests, as previous studies
have, that how caregivers view their problems, coping skills, self-efficacy, depression and guilt,
social support, and quality of life are good predictors of caregivers’ burden. It also stated that
changing perceptions, improving social skills, and encouraging using resources were particularly
important (Tremont et al., 2008, 504).The reason why the authors focused on telephone delivered
counseling is that it is cost effective and easy to access. The counseling program developed for
the telephone interviews was delivered over a year-long period and was largely geared towards
enhancing coping of the caregivers, working on problem-solving methods, and facilitating
positive changes throughout the family. The purpose of this was aimed at reducing the amount of
caregiver burden and depression experienced. (Tremont et al., 2008, 506).The results showed
that the caregivers receiving the telephonic interviews reported a significantly lower level of
caregiver burden than those in the control group receiving their standard care. The burden scores
were initially reported in the moderate range for both the control and experimental group; after
the study, the control group remained unchanged, and the experimental group’s burden scores
decreased to the very mild range. The experimental group also displayed less depressive
symptoms than the control group after the telephonic interviews; however this was not clinically
significant. This research may contain a very important problem which deserves discussion.
What the study found is that at the beginning of the trials, there was a reported 24% of caregivers
that experienced depressive symptoms at a particular level as versus another previous study
showing a reported 42% of people at the same level (Tremont et al., 2008, 514). This study may

not be as generalizable to the representative population of dementia caregivers. Another
important aspect was that the caregivers who dropped out of the study showed more depressive
symptoms than those who were retained. It is important to note that the caregivers who
participated in the study were significantly burdened with a significant reduction of burden after
the one year of treatment. The authors suggest that this method does have benefits as stated
before because it is a method that is easily accessible and more affordable than traditional care
and it is easily learned and can be given by a multitude of health care providers. (Tremont et al.,
2008, 515).
It is important to note that the caregivers’ duties and emotional impact do not end with
institutionalization of the care recipient. The study by Duncan Davis, Tremont, Bishop, and
Fortinsky (2011) conducted research on caregiver adjustment after they placed the care recipient
in a nursing home. The interviews were also conducted by telephone. It was stated that on
average a caregiver provides homecare of the care recipient for five years by the time of
placement. (Duncan Davis et al., 2011, 380). One study showed that the wellbeing and health of
caregivers did not improve after two years of post-nursing home placement of the care recipients
and that their health problems were comparable to home caregivers. There is also a gap in the
literature that does not address the needs of caregivers after the first few months of caregiving
(Duncan Davis et al., 2011, 381). Although the depression persisted, the study did shows that
there was a greater reduction of guilt feelings and more positive interactions after the
intervention than those in the control group.
Discussion
The purpose of this literature review is to try and understand what relationship exists
between a caregiver of a person with dementia and depression. Multiple studies tend to suggest

that depression occurs more in a caregiver than those people who are not caregivers. Of the
literature reviewed, there were no studies that suggested that the depression experienced by
caregivers was the same or less than the general population which supports that the majority of
the literature does not contest this idea. It appears that this is the only idea in the literature that
remains unquestioned. The purpose of most of the literature was to research what steps could be
taken in order to either prevent or treat depression related to care giving which is where the
questions start to form. The questions mainly circle around what type of treatment is best and
how it should be delivered. The literature review suggests that effective problem solving,
positive perceptions of the caregiver, and helping behavior of caregivers are some of the best
strategies used in reducing burden and depression. This is a common factor in many of the
studies. The research by Nichols et al. which asked caregivers to state their most pressing
concerns was interesting. The study states it was the first of its kind to look at what the
caregivers were interested in learning most and was conducted to tailor a psychoeducational
support group for caregivers (Nichols et al., 2009, 11). What was particularly interesting was that
the topics chosen by caregivers would be less likely to reduced burden and possible depression
related to caregiving if we were to draw conclusions from the findings in the literature review.
Because of this, it may be wise to have caregivers attend two different types of counseling: one
group to address their concerns and one to address combating the possible burden and depression
they may experience.
Overall, there are issues with the testing in most of the studies. One of the main issues
across the board is with the drop-out rate of participants. Of the studies which identified the
number of participants who started the study and those who finished, the researchers were left
with a much smaller sample size than what would be desired. Some of the main reasons behind

this was either the participants died, became too ill to participate, or were too busy to remain in
the study as reported in the study by Tremont et al. (2008, 511). The sample size for the majority
of the studies were around 30-60 participants which suggests limitations. In the Tremont et al.
(2008) study it shows that the small sample size limits identifying how the different types of
variables (i.e. dementia type, relationship of caregiver to patient, ethnicity, gender, and living
arrangements) affect the depression rates. Because of these small sample sizes, it is nearly
impossible to predict if caregiver depression is affected by these variables. In the Dunlin and
Dominy study (2008) they cited that some of their limitations were that they used a cross
sectional methodology rather than a longitudinal methodology which would provide more
information about how positive thinking impacts caregivers over time. This study was also
conducted in New Zealand and could limit the generalization of the study (67). Interestingly
enough, some of the studies did not even mention that there could be possible limitations to their
research which is concerning; if possible flaws were not pointed out, do the researchers believe
they do not exist? If so, are they then cognizant of and controlling for possible extraneous
variables that may come across the study? The fact that there are so many questions that still
remain about the relationship of caregivers and depression as well as the issues with small
sample size and other limitations, denote that more research about this study is warranted.
Considering the large implication of people involved in caregiving and the state of this country's
economy, it would be advisable that more research be done sooner rather than later.
I was surprised to learn that in a lot of the studies, it pointed to the notion that the
predictors of caregiver burden were not necessarily due to the caregiving itself but rather to other
factors such as difficulties in dealing with the stressors. Considering one can assume that
caregiving for an adult with dementia is particularly stressful, does the incidence and severity of

depression look similar to those people in other known stressful environments? It is documented
that about one-third of caregivers have depression. A study by Sonya Felix (2002) states that the
incidence of depression among the general population is around 10% (1). If we use this statistic,
nearly a quarter more people are affected with depression in the caregiver group than the general
population. If the incident rates of depression among caregivers are similar to those in other
groups in stressful situations (such as divorce, natural disasters, or war), are there methods that
have been found in the latter scenarios which work to decrease depression rates? If so, I would
suggest that some research be done to see if those methods also work on caregivers. If there is a
correlation between the incidence and severity of depression of the aforementioned groups then
there might be a lot of additional information which can be used to help treat depression in these
groups. I think that one of the bigger issues is that there are still many unanswered questions
about depression in general - what causes it, why do only certain people become afflicted, and
how do you treat it? Because answers to these questions vary there will likely be a considerable
amount of research on these topics which will be conducted in the future.
Conclusion
There is still research that needs to be done on the relationship between caregivers and its
effects. There are a considerable amount of caregivers who experience depression due to the
stressors of caregiving. If there will be 26.4 million caregivers in the future, then 8.7 million of
these caregivers will experience depression as versus 2.6 million of the general population. Will
we have the resources to care for the additional 6 million people who will experience
depression? It would be prudent for the research to find if there is a way to prevent or quickly
treat depression in caregivers rather than it presenting later on when the caregiver finally comes
to seek help. Another issue that is important to note is that with the increase of dementia patients

and those who may take retirement earlier to take care of a parent with dementia, there will be a
lower amount of people in the workforce and a greater constraint on government funded
programs like social security. Caregiver burden is affected by multiple factors to include their
perceptions of caregiving and how the caregiver chooses to respond to those factors. Considering
all of the ill effects than can occur while caring with someone with dementia, it is important to
find the interventions that work with this population to avoid unnecessary consequences.

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