Professional Case Management

Vol. 25, No. 4, 213-219

Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.

Understanding the Impacts of Caregiver

Stress
Janna Broxson, LMSW, and Leilani Feliciano, PhD

ABSTRACT
Purpose/Objectives: Identifying risk factors associated with caregiver stress and suggesting methods for
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systematic caregiver screening for caregiver strain, depression, and anxiety.

Primary Practice Setting: Emergency department, primary care, and other health care settings.
Findings/Conclusions: Caregiver stress can lead to multiple negative outcomes including declines in physical
health, increased mental health concerns, and overall decreased quality of life. Caregiver stress also leads
to increased financial costs to the person, family, and health care systems, making it a public health issue.
Recognizing caregiver stress is the initial step to identifying those in need of support and to providing quality
care. Fortunately, caregiver stress can be prevented or reduced using a culturally competent multidimensional
approach to addressing social determinants of health and unmet physical, psychological, and social/emotional
needs of caregivers.
Implications for Case Management: Case management plays a critical role in assessing, educating,
advocating, creating care plans, and advocating for both the caregiver and the care recipient.
Key words: caregiver burden, caregiver strain, caregiver stress, Modified Caregiver Strain Index

C
aregiver stress, strain, or burden affects nearly
44 million caregivers in the United States and
has become a public health issue (National
Association of Chronic Disease Directors & Centers
for Disease Control and Prevention, 2018; Shaji &
Reddy, 2012). More than 16 million caregivers care
for a person living with Alzheimer’s disease or demen-
tia (Alzheimer’s Association, 2019). These caregivers
are referred to as “informal” or “family” caregivers
who are unpaid versus the more professional or paid
caregivers who often work in home health or long-
term care settings. One in 10 informal caregivers is
75 years and older, and this age group experiences
higher rates of caregiver strain than its younger equiv-
alent (National Alliance for Caregiving [NAC] and
AARP, 2015). The number of older adult caregivers is
expected to increase as our nation ages. The workload
on these caregivers is immense, with nearly 31% of
caregivers providing more than 20 hr of care a week.
Of those high-hour caregivers, 53.8% have been pro-
viding care for more than 2 years and 24% have been
providing care for more than 5 years (NAC & AARP,
2015). Caregiver stress is often underdiagnosed or
overlooked in patients caring for older adults living
with dementia due to it being perceived as a “normal
part of aging” (Brodaty & Donkins, 2009). A care-
giver is often “the invisible patient” who presents the
in health care setting with significant physical and
psychological issues that are negatively impacting his
or her caregiving abilities (Adelman, Tmanova, Del-
gado, Dion, & Lachs, 2014, p. 1054).
Emotional stress and financial strain are highly
reported among caregivers (31%; NAC & AARP,
2015). Caring for those with a disabling health or
mental health condition may negatively impact qual-
ity of life due to the development of chronic stress,
which is highly associated with caregiving. Chronic
stress, in turn, can lead to adverse physical, mental,
and emotional health outcomes in both the caregiver
and the care recipient (Colvin & Bullock, 2016;
Ogunlana, Dada, Oyewo, Odole, & Ogunsan, 2014).
Impact of Caregiver Stress
Caregiver strain or stress impacts caregivers biologi-
cally, psychologically, and socially (Colvin & Bullock,
2016). From a biological perspective, perceived stress
or burden is associated with higher rates of physical
health problems (University of Missouri Health, 2017;
Roth, Fredman, & Haley, 2015). Caregiver stress is also
highly correlated with the development or exacerbation
Address correspondence to Janna Broxson, LMSW, College
of Health Solutions, Arizona State University, 550 3rd St,
Phoenix, AZ 85004 (jbroxson@asu.edu).
The author reports no conflicts of interest.
DOI: 10.1097/NCM.0000000000000414

Vol. 25/No. 4 Professional Case Management 213

Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
of chronic conditions such as heart disease, arthritis,
and diabetes, as well as higher levels of cholesterol and
cortisol (Colvin & Bullock, 2016). Caregivers often
report physical symptoms linked to caregiver strain
(e.g., headaches, musculoskeletal pain, and other gas-
trointestinal issues; Bevans & Strenberg, 2012; Colvin
& Bullock, 2016). Thus, it is not surprising that care-
givers are at a higher risk for sleep and appetite distur-
bances and fatigue (Colvin & Bullock, 2016).
From a psychological perspective, perceived stress
or burden is also associated with higher rates of anxi-
ety and depression (Roth et al., 2015; University of
Missouri Health, 2017). Symptoms of depression and
anxiety can cause the caregiver to experience decreased
motivation, difficulty with concentration and tolerat-
ing distress, sleep and appetite disturbances, and an
increase in agitation and irritability, which can neg-
atively impact the caregiver’s ability to provide care
effectively (Bevans & Sternberg, 2012). Higher rates
of depression are reported in the caregivers of individ-
uals who are highly physically or mentally dependent
(50%) on their caregiver (Buchanan & Huang, 2013).
Another study found that 23% of caregivers reported
moderate to severe depression and 33% reported
moderate to severe anxiety related to their caregiving
role (University of Missouri Health, 2017). Caregivers
are also at a greater risk for engaging in unhealthy
behaviors such as smoking and/or other substance and
prescription use (Colvin & Bullock, 2016).
Caregiving is demanding on the caregivers’ time,
which may result in social isolation and withdrawal
(Colvin & Bullock, 2016). Caregivers may spend much
of their time taking their care recipient to doctors’
appointments and fulfilling their caregiver role or duty
(Colvin & Bullock, 2016). This can lead to engage-
ment in a negative cycle of unnecessary health care use
where caregivers rely on the health care system to help
ease the burden of caregiving due to ongoing stressors
and an inability to manage on their own (Guterman
et al., 2019). Chronic stress and decreased quality of
life often lead to caregiver burnout, which can result
in higher emergency department (ED) use, health care
utilization, and morbidity and mortality rates (Bevans
& Sternberg, 2012: Schultz & Sherwood, 2008). The
biopsychosocial aspects of caregiving play an integral
part in the development of caregiver stress. Caregivers
are juggling many demands (emotional and instrumen-
tal), and this often results in decreased biopsychosocial
functioning, which ultimately leads to caregiver stress
or burnout (Colvin & Bullock, 2016).
Benefits of Caregiving
There are many reasons why family members and sig-
nificant others become caregivers including for love,
duty, socioeconomic dependence, guilt, or a sense of
responsibility (Guberman, Maheu, & Maille, 1992).
The caregiver often has a whole-person approach to
caring for his or her loved one, which is known to
enhance the care recipient’s quality of life and well-
being. For example, the caregiver is well versed in the
care recipient’s unique personal, cultural, and spiritual/
religious preferences, which are essential elements to
implement in the care planning process.
Caregivers also assist care recipients to be able to
age in place, and this has been found to increase emo-
tional and mental health stability (NAC & AARP,
2015). Aging in place also leads to delayed placement in
long-term care facilities. Notably, even a 1-month delay
in nursing home placement per older adult in the United
States could save more than $60 billion each year (Butler,
1995, as cited in Yaffe et al., 2002). Caregiving is also
associated with lower health care utilization and costs
in older adults than in their cohort without a caregiver
(Friedman et al., 2019). Most caregivers are not paid
and absorb hidden health care costs, which helps offset
the “economic costs of long-term services and supports
(LTSS) to individuals, families, and society” (Friedman
et al., 2019, p. e535). Although this section highlights
some of the benefits of caregiving, there are, unfortu-
nately, for many caregivers, more negative than positive
effects and impacts (Brodaty & Donkins, 2009).
Risk Factors
Numerous risk factors are associated with care-
giver burden or stress such as lower level of educa-
tional achievement, unemployment, gender (female),

Numerous risk factors are associated with caregiver burden or stress such as lower
level of educational achievement, unemployment, gender (female), dependent person
lives with caregiver, level of dependence on caregiver, number of hours spent (e.g., 20–
40 hr), social withdrawal and isolation, financial strain, and depression and anxiety.
Caregivers who have higher time and care demands tend to experience financial
strain due to having to cut back hours or quit jobs in order to fulfill their caregiving
responsibilities. Caregivers often feel unprepared for said responsibilities and may feel
that they have no choice in assuming the caregiver role.

214 Professional Case Management Vol. 25/No. 4

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dependent person lives with caregiver, level of depen-
dence on caregiver, number of hours spent (e.g., 20–40
hr), social withdrawal and isolation, financial strain,
and depression and anxiety (Adelman et al., 2014).
Caregivers who have higher time and care demands
tend to experience financial strain due to having to cut
back hours or quit jobs in order to fulfill their care-
giving responsibilities (NAC & AARP, 2015). Care-
givers often feel unprepared for said responsibilities
and may feel that they have no choice in assuming the
caregiver role (Adelman et al., 2014; NAC & AARP,
2015). This causes a poor fit between the caregiver’s
perceived efficacy and ability to adapt to caregiving
demands or societal expectations. This may create
interpersonal and relationship strain, which, in turn,
results in higher levels of perceived stress (Monin &
Schultz, 2009; Roth et al., 2015).
Minority populations have been found to pro-
vide higher levels of care, receive less professional
support, and report greater decline in physical health
than their Caucasian counterparts (Pharr, Francis,
Terry, & Clark, 2014; Pinquart & Sörensen, 2005).
Minority and LGBT (lesbian, gay, bisexual, and
transgender) caregivers are less likely to seek mental
health services or support due to ongoing mistrust
of government programs and health care providers
linked to historical mistreatment and gaps in cultur-
ally competent health care services and programs
(Adelman et al., 2014; Pharr et al., 2014; SAGE,
2018). Staff and providers should receive trainings on
caregiver trends and cultural implications. For exam-
ple, African American caregivers tend to be younger
than Caucasian caregivers and have extended family
members or “fictive kin,” whereas many White care-
givers tend to be older females caring for a relative
or spouse (Dilworth-Anderson, Williams, & Gibson,
2002; McCallum, Longmire, & Knight, 2007). Thus,
care providers should not focus solely on age as a
risk factor for caregiver stress. Older adult LGBT and
African American caregivers are also twice as likely
to include church members and family as part of their
support system when compared with their Hispanic
and non-Hispanic counterparts (SAGE, 2018). These
findings suggest that care providers should be mind-
ful that informal caregivers may not necessarily be
spouses or blood relatives but still may be considered
family and be fully immersed in the caregiver role.
LGBT caregivers tend to have a smaller support
system and face numerous barriers to needed services
such as limited resources, lack of partner recogni-
tion, and health and mental health disparities (SAGE,
2018). LGBT caregivers are less likely to seek out
providers and community services due to stigma or
fear of discrimination (SAGE, 2018). This population
often experiences higher rates of physical and men-
tal health concerns because of perceived barriers to
needed services, which could result in higher levels of
caregiver stress (SAGE, 2018). Care providers should
inquire directly about caregiver burden in these pop-
ulations rather than assume a similar caregiving pro-
cess as the majority group caregivers.
Addressing Caregiver Stress
Addressing caregiver stress involves accurate iden-
tification and recognition of the presence of stress/
strain/burden. However, there are extensive gaps in
screening practices for caregiver stress or burden
within health care settings. The Modified Caregiver
Strain Index (MCSI) is a brief, valid, and reliable tool
that can be used to quickly screen for caregiver strain
in various health care and mental health settings
(Onega, 2018). The MCSI evaluates the caregiver’s
perceived stress associated with his or her caregiver
role. This index assesses nearly 13 domains that may
impact caregivers such as physical health, financial
and employment issues, level of social interaction,
and time demands (Onega, 2018; Thorton & Tra-
vis, 2003). Administering the MCSI can help with
pinpointing the primary source of stress, which can
then assist in increasing the health care staff’s abil-
ity to identify risk for burnout, provide brief inter-
ventions, and refer to appropriate services (Onega,
2018). Screening for caregiver stress and its effects on
the client and family is essential in developing indi-
vidualized treatment plans and interventions to off-
set possible health and mental health consequences
(Bevans & Sternberg, 2012). Caregivers should also
receive ongoing depression and anxiety screening to
help identify early signs of anxiety and depression
(University of Missouri Health, 2017).
Clearly, there is a need for subsequent screen-
ing and brief interventions to support informal and
family caregivers. As discussed previously, anxiety

Addressing caregiver stress involves accurate identification and recognition of the

presence of stress/strain/burden. However, there are extensive gaps in screening
practices for caregiver stress or burden within health care settings. The Modified
Caregiver Strain Index (MCSI) is a brief, valid, and reliable tool that can be used to
quickly screen for caregiver strain in various health care and mental health settings.

Vol. 25/No. 4 Professional Case Management 215

Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
and depression are highly comorbid with caregiver
stress; thus, caregivers should receive ongoing depres-
sion and anxiety screening to identify early signs
of anxiety and depression (University of Missouri
Health, 2017). Use of subsequent screening tools such
as the 9-item Patient Health Questionnaire (PHQ-
9; Kroenke, Spitzer, & Williams, 2001) to identify
depressive symptoms, the Generalized Anxiety Disor-
der (GAD-7) assessment (Spitzer, Kroenke, Williams,
& Lowe, 2006), or the Geriatric Anxiety Screen—
10-Item Version (GAS-10; Mueller et al., 2015) for
anxiety symptoms can be useful for this purpose.
Utilizing these tools to identify common but critical
caregiver needs may be the first step to begin address-
ing these and providing better care.
Using an integrated care team approach (ICTA;
e.g., behavioral health providers, patient navigators,
social workers) is one way to more readily recognize
risk for caregiver strain and provide appropriate brief
interventions. A multidimensional approach must be
considered when developing and implementing inter-
ventions for the caregiver (Sullivan & Miller, 2015).
A multidimensional approach can help address and
reduce biopsychosocial factors that may be caus-
ing the caregiver unnecessary psychophysiological
distress. For example, a multidimensional approach
would be to use psychoeducation and exercise inter-
ventions, which have been found to have a profound
impact on enhancing psychological and physical
functioning and behavioral outcomes (e.g., improv-
ing sleep and reduce cardiovascular risks; National
Institute on Aging, 2014). Multidimensional inter-
ventions should also include promoting the impor-
tance of social and emotional support, referrals to
needed services, and brief interventions (e.g., mind-
fulness, stress management, and problem solving;
Kwan, Valeras, Levey, Nease, & Talen, 2015; Sul-
livan & Miller, 2015). This approach will likely keep
costs down and lead to better patient outcomes for
caregivers and care recipients (Kates et al., 2018).
Case Example
Mr. S., a 74-year-old man with Stage 4 Parkinson’s
disease, presented to the integrated care clinic. He was
accompanied by his caregiver, his wife of 52 years,
Mrs. S. Upon interview, she revealed that he relied
on her for help with both activities of daily living and
instrumental activities of daily living. She believed
that he was experiencing continued cognitive decline
(e.g., he often became confused and would lash out
verbally and physically) and was a high fall risk, thus
he was unable to be left alone. Mr. S. was recently
diagnosed with dementia and had a hard time accept-
ing the diagnoses and refused to accept professional
caregiver support. His wife, a 72-year-old woman, had
216 Professional Case Management Vol. 25/No. 4
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a reported history of spinal stenosis, arthritis, coro-
nary artery disease, and hypertension. According to
her most recent medical visit, she had had an increase
in cortisol levels and cholesterol due to the stress from
caregiving (biological factors). Mrs. S. corroborated
this report, endorsing high levels of stress, and scored
a 29 on the MCSI, which is indicative of severe care-
giver strain. She reported that she was unable to sleep
at night because she lay awake anticipating that her
husband would need help getting to the bathroom
and was worried he might attempt to go on his own
and fall again. Mrs. S. stated that she was experienc-
ing ongoing symptoms of worry and depression (psy-
chological factors). Mrs. S. disclosed that Mr. S.’s
behavior and personality changes had caused her to
feel that she was no longer in a “loving” relationship
and she found that she spent a lot of her day either
feeling angry or crying. Upon further screening, Mrs.
S. scored an 18/21 on the GAD-7 and a 20/27 on the
PHQ-9, scores in these ranges are indicative of severe
symptoms of anxiety and depression, respectively.
Mr. and Mrs. S. lived 60 miles from their primary
care provider and had limited social and family sup-
ports. The caregiver felt that she was unable to rely
on her children because they had their own family
or were enrolled in college. Mrs. S. reported that she
did not go out with her friends, nor took any time for
herself because she “had no time to spare” and could
not leave Mr. S. home alone (social factors). She also
stated that she was constantly overwhelmed, anx-
ious, and fearful of what the future holds for them.
Implications for Case Management
Case management plays a critical role in assessing
social determinants of health and general systems
(e.g., socioeconomic, cultural, and environmental)
that may be negatively impacting both the caregiver
and care recipient’s health and mental health out-
comes (Kohl, Calderon, & Daly, 2018). Case man-
agers (CMs) also initiate screening, services plan-
ning, advocating, implementation, and monitoring
for caregiver strain (Case Management Society of
Case management plays a critical
role in assessing social determinants
of health and general systems
(e.g., socioeconomic, cultural, and
environmental) that may be negatively
impacting both the caregiver and care
recipient’s health and mental health
outcomes.
America [CMSA], 2016; National Association of
Social Workers [NASW], 2013). They also play a crit-
ical role in incorporating culturally competent guide-
lines and policy to minimize barriers to services and
reduce system fragmentation (CMSA, 2016; NASW,
2013). Case managers also initiate staff and provider
education and advocate for referrals to appropriate
resources (e.g., caregiver support group, counseling,
and other community/web-based resources), which
can improve patient/caregiver and clinical outcomes
(Bevans & Sternberg, 2012). Case managers develop
and implement enhanced pathways to caregiver sup-
port by coordinating care with community providers
(NAC & AARP, 2015; NASW, 2013).
In the case example, the CM would play a critical
role in developing a biopsychosocial case conceptu-
alization, educating the integrated care team on Mr.
and Mrs. S.’s stressors, needs, areas of concern, Mrs.
S.’s level of perceived stress, and level of support. The
CM would spearhead the development of a multi-
disciplinary care plan and collaborative approach to
meet both Mr. and Mrs. S.’s health and mental health
needs, enhance patient safety, and provide Mrs. S.
with resources to promote quality of life and cost-
effective outcomes (CMSA, 2016). The CM would
then expediently place appropriate referrals to com-
munity-based caregiver and care recipient support
services (e.g., psychoeducation, skills building, physi-
cal therapy, occupational therapy, and counseling)
(CMSA, 2016; NASW, 2013), taking care to check
back with Mrs. S. at a follow-up appointment to
ensure that she was able to connect with the services.
Screening for caregiver strain in combination
with the use of an ICTA can be a cost-effective and
targeted approach in reducing unnecessary primary
care and ED visits (Serrano, Prince, Fondow, & Kush-
ner, 2018). An ICTA can help with identification of
the biopsychosocial factors associated with caregiver
burden (Souza et al., 2017) and help shape an appro-
priate intervention or connection to appropriate sup-
ports. Educating staff and providers on the impor-
tance of evaluating caregiver stress can increase the
effectiveness of care by connecting patients to appro-
priate resources (e.g., caregiver support group, coun-
seling, and other community/web-based resources)
and help prevent caregiver burnout (Bevans & Stern-
berg, 2012). See Table 1 for caregiver resources. The
use of an ICTA can also increase access to evidence-
based brief interventions such as cognitive-behavioral
therapy, behavioral activation, or mindfulness-based
techniques to reduce stress and promote better health
and mental health outcomes (Kwan et al., 2015;
Serrano et al., 2018). Incorporating culturally com-
petent psychosocial interventions can help increase

TABLE 1
Caregiver Resources
Resource
Alzheimer’s Association
Area Agency on Aging
National Alliance for Caregiving
Family Caregiver Alliance
AARP
VA Caregiver Support
Administration for Community Living
American Society on Aging
Description URL
The Alzheimer’s Association is a voluntary organization that focuses on https://www.alz.org
Alzheimer’s care, support, and research. It aims to provide care and https://www.alz.org/help-
support for the person, family, and caregivers. support/caregiving
It is a nonprofit agency that addresses the needs and concerns of https://www.n4a.org/caregivers
older adults at the regional and local levels. The Area Agency on
Aging assists with coordinating care and offers services to help older
adults and caregivers to choose the most appropriate services, living
arrangements, and supports for them.
This is a nonprofit coalition dedicated to improving quality of life for https://www.caregiving.org/
caregivers and care recipient through advocacy and research. resources/
Its aim is to improve the quality of life for family caregivers and care http://www.caregiver.org/
recipients. The Family Caregiver Alliance provides ongoing support
and services to family caregivers of adults with physical and cogni-
tive impairments. These services include assessment, care planning,
respite services, etc.
It provides resources for caregivers at all stages in the caregiving https://www.aarp.org/caregiving/
process (early to later stages). Resources cover information, tips for
managing caregiver stress, medical, legal, etc.
The VA MISSION Act is increasing access to caregiver support for https://www.caregiver.va.gov/
caregivers of eligible veterans. The goal is to promote health and well-
being of the veteran and family members.
The Administration for Community Living offers numerous links to https://acl.gov/programs/
national caregiver support programs, such as grandparents raising support-caregivers
grandchildren, and respite and family caregiver programs.
This organization provides free webinars on family caregiving issues to https://www.asaging.org/family-
support family caregivers. caregiver-support-web-seminar-
series

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the caregiver’s competency and understanding of his
or her role. It also provides an opportunity to teach
skills to enhance the caregiver’s ability to carry out
caregiving tasks, which will help with decreasing per-
ceived stress (Adelman et al., 2014).
Conclusion
The impact of caregiver stress can decrease quality of
life, lead to or contribute to a decline in health, and
lead to increased mental health needs, increased stress
responses, and the development of depression and anx-
iety (Sullivan & Miller, 2015). Recognizing caregiver
stress, social determinants of health, and providing care
and ongoing education and training can help provid-
ers recognize unmet physical, psychosocial, and emo-
tional needs of caregivers within health care settings
and reduce unnecessary stressors and health care usage
(Serrano et al., 2018; Souza et al., 2017). Promoting
emotional support, chronic disease, and mental health
management for both the caregiver and the care recipi-
ent using a patient-centered, multidimensional inter-
vention (e.g., psychosocial, emotional, and wellness)
approach can result in the optimal level of care for the
care recipient and the caregiver (Sullivan & Miller,
2015). Promoting collaboration, advocacy, education,
coordination, and partnering with community-based
resources can enhance caregiver and care recipient buy-
in for needed supports and services, which can assist
with reducing health care utilization and reduce health
care-related costs (CSMA, 2016; Friedman et al., 2019;
Pharr et al., 2014; Pinquart & Sörensen, 2005).
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Janna Broxson, LMSW, is Doctor of Behavioral Health student
at Arizona State University and is presently interning at Mayo Clinic’s
Community Internal Medicine primary care clinic. Her areas of study are
aging and integrated behavioral health. She has extensive clinical experi-
ence in providing brief interventions and support for caregivers and care
recipients.
Leilani Feliciano, PhD, is Director of Clinical Training and Associ-
ate Professor at the University of Colorado, Colorado Springs. Her clinical
and research program focuses on mental health and aging. Her specific
areas of interest include late-life depression, comorbid psychological and
medical problems, and behavioral problems associated with dementia.
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