Alzheimer’s Patient Familial Caregivers:

A Review of Burden and Interventions

Alexandra Wennberg, Cheryl Dye, Blaiz Streetman-Loy, and Hiep Pham

As the prevalence of Alzheimer’s disease and related disorders (ADRD) increases, so does the
staggering cost of providing care for patients with ADRD. Often, family or friends of patients
adopt the role of primary caregiver (CG). Although this arrangement offsets the direct fi-
nancial costs, the burden of caregiving can lead to detrimental physical, financial, and men-
tal outcomes, including a 600 percent increased risk of spousal CGs developing dementia.
The most successful interventions use multidisciplinary approaches, but results range from
weak to moderate. This review presents current literature on CG burden, risk factors, and
interventions, and proposes recommendations for future research. The authors advocate for
a holistic, interdisciplinary team approach, including physicians, nurses, and social workers,
focused on improving health and quality of life concurrently in both the CG and the care
recipient.

KEY WORDS: Alzheimer’s disease; Alzheimer’s disease and related disorders; caregiver burden;
caregiving; intervention

M ore than 5 million older adults in the

United States have Alzheimer’s disease,
and as the population ages, the prevalence
of Alzheimer’s disease and related disorders (ADRD)
will increase (­L. E. Hebert, ­Weuve, ­Scherr, & ­Evans,
2013). Informal caregivers (CGs) provide the major-
ity of care to those with ADRD. Informal CGs are
generally family members, such as a spouse or adult
child or close friends of the care recipient (CR)
(­Alzheimer’s ­Association, 2013). Unfortunately, CGs
often experience high levels of stress and burden re-
sulting from the challenges of balancing the physical,
psychological, emotional, social, and financial stress-
ors associated with caregiving, which are mediated
by the CG’s perception and competency (­Etters,
­Goodall, & ­Harrison, 2008).
Caregiving burden affects financial, health, and
quality-of-life outcomes, with specific links to mood
disorders, cognitive decline, disrupted sleep, and in-
creased social isolation and loneliness ( ­Joling et al.,
2010; ­Vitaliano, ­Murphy, ­Young, ­Echeverria, &
­Borson, 2011). CG stress and burden also have been
shown to increase the risk of cardiovascular disease,
hypertension, kidney disease, obesity, medication use,
and mortality (­Fonareva & ­Oken, 2014). Perhaps the
most critical potential outcome for CGs was identi-
fied in one study that found CGs to be at a six times
increased risk of developing dementia themselves
(­Norton et al., 2010). In addition, CG stress and bur-
den are associated with institutionalization of the CR
(­Gaugler, ­Yu, K­ richbaum, & ­Wyman, 2009).
The aforementioned findings are supported by
studies that have examined biomarker differences in
CGs versus non-CGs. Multiple studies have found
that caregiving is associated with higher levels of
interleukin-6, which is a risk factor for cardiovascu-
lar disease, diabetes, arthritis, osteoporosis, and func-
tional decline, among other conditions (­Fonareva &
­Oken, 2014). Indeed, one study found that over a
period of six years, CGs had a 400 percent greater
annual increase in interleukin-6 per year than non-
CGs (­Kiecolt-Glaser et al., 2003). In addition, care-
giving may increase levels of biomarkers associated
with cognitive and aging outcomes, including higher
cortisol levels, shorter telomere length, and reduced
telomerase activity (­Fonareva & O ­ ken, 2014).
Several factors mediate the risk between CG stress
and burden and negative outcomes. Many interven-
tions aimed at reducing CG stress and burden have
been developed, but few have shown strong effects
(­Brodaty & A ­ rasaratnam, 2012; ­Van’t ­Leven et al.,
2013). This article reviews risk factors associated with
CG morbidity and mortality, as well as CG interven-
tions, and makes recommendations for the future.

doi: 10.1093/hsw/hlv062  © 2015 National Association of Social Workers e162

RISK FACTORS
Gender
Gender greatly influences differences in caregiving
style and experiencing burden; women seem to have
more frequent, intensive, and affective involvement
in caregiving, and have greater psychological burden
(­Pinquart & S­ orensen, 2006; ­Stewart et al., 2014).
How­ever, research has also found that whereas men
experience similar levels of emotional burden as
women with regard to caregiving, they may be less
likely to express such feelings (­Akpinar, ­Kucukguclu,
& ­Yener, 2011). In addition, a study examining how
burden affects spousal CGs found that male spouses
were more likely to feel obligated to be a caregiver
(­Friedemann & B ­ uckwalter, 2014); however, this find-
ing seems to clash with traditional gender roles. Stud-
ies have found that there is an assumption that women
are expected to take on the role of CG (­Robinson,
­Bottorff, P ­ esut, O­ liffe, & T­ omlinson, 2014), even
though they often feel unprepared or unknowledge-
able about the caregiving role (­Papastavrou,
­Kalokerinou, P ­ apacostas, T
­ sangari, & S­ ourtzi, 2007).
To escape gender stereotypes, men reappraise their
caregiving duties, turn them into a sort of job in
which they solve problems, complete tasks, and can
feel proud of the hard work (­Phinney, ­Dahlke, &
­Purves, 2013). Men also detach themselves from their
emotions to focus on completing a task (­Robinson
et al., 2014). When designing CG interventions, it
is important to take into consideration gender differ-
ences. Research shows that men find it difficult to
perform certain duties, including meal preparation
(­Robinson et al., 2014). This suggests that skills-based
training interventions should target male CGs, and
focus on teaching skills such as meal planning and
preparation. It has also been found that men are less
likely to seek formal sources of assistance and support,
so it is very important for male CGs to have access to
informal sources of support, particularly other men
who are in the same situation (­Robinson et al., 2014).
Male-specific interventions are especially important
in light of the finding that male spouse CGs are 12
times more likely to develop dementia, as compared
with the approximately four-fold increased risk in
female spouse CGs (­Norton et al., 2010).
Relationship to CR
Caregiving can be particularly difficult for spouses
because of the concern that their relationship with
their spouse will deteriorate (­Savundranayagam,
Wennberg, Dye, Streetman-Loy, and Pham / Alzheimer’s Patient Familial Caregivers
­ ontgomery, & K
M ­ osloski, 2011). Spousal caregivers
report a greater number of hours providing care, and
they are less likely to receive help from informal
sources (for example, other family members) (­Pinquart
& ­Sorensen, 2011). Study results have shown greater
burden and guilt among adult-child caregivers,
which may indicate that spouses regard caregiving
as part of their marital duties, whereas for adult chil-
dren, CG tasks may imply significant changes in their
lifestyle (­Conde-Sala, ­Garre-Olmo, ­Turro-Garriga,
­Vilalta-Franch, & L ­ opez-Pousa, 2010). Notably, in
nonwhite ethnic groups, CGs are less likely to be
spouses, and this relation, along with differences in
cultural familial expectations, affects the experience
of the CG and CR (­Napoles, ­Chadiha, ­Eversley, &
­Moreno-John, 2010). There is little research regard-
ing gay, lesbian, bisexual, and transgender individu-
als in the context in caregiving, but a recent study
found that relationship context and different norms
governed the dyad’s experiences. As the family unit
continues to evolve, acknowledging same-sex couples
and other relations will become increasingly important
(­Muraco & ­Fredriksen-Goldsen, 2014).
Race and Culture
Race and culture also affect CG burden and outcomes.
Studies have found that white caregivers report higher
levels of depression and lower levels of well-being as
compared with African American caregivers (­Siegler,
­Brummett, ­Williams, ­Haney, & ­Dilworth-Anderson,
2010), perhaps because African Americans reported
using active coping (for example, positive reappraisal)
strategies more often (­Kim, ­Knight, & ­Longmire,
2007). In addition, nonwhite CGs report greater feel-
ings of familism, ethnic group identity, reciprocity,
sense of duty, and sense of “God’s will,” and have lower
CR institutionalization rates (­Napoles et al., 2010). It
has also been found that African American CGs, as
compared with white CGs, tend to report better psy-
chosocial health, are more likely to use spirituality or
prayer as a support, and place a greater importance on
extended family networks (­Napoles et al., 2010). Al-
though African American CGs report greater satis­
faction, reduced burden, and fewer adverse health
outcomes, objective measures contradict these findings.
Studies have found that African American CGs have
higher blood pressure as compared with white CGs
and African American non-CGs, thus suggesting
that there is a schism between self-report health
outcomes and o ­ bjectively measured outcomes in
e163
these groups; comparable findings have been shown
in Korean American CGs (­Kim & ­Knight, 2008;
­Knight, ­Longmire, ­Dave, ­Kim, & ­David, 2007; ­Knight
& ­Sayegh, 2010).
Similar to African American CGs, Hispanic CGs
have a more positive attitude about caregiving; how-
ever, they also consistently report worse psychosocial
health (­Napoles et al., 2010). This may be because
Hispanic CGs are less likely to use formal support
services, are more likely to spend more hours per week
caring for the ADRD CR, and are in more intensive
caregiving situations (for example, the CR has more
advanced disease) (­Llanque & ­Enriquez, 2012). Find-
ings from the few studies that include observations of
Asian American CGs have revealed that they have
strong beliefs about filial responsibility, and are more
likely to have misconceptions or stigmatization about
ADRD (­Napoles et al., 2010; ­Sun, ­Ong, & ­Burnette,
2012).
Understanding cultural differences in caregiving is
becoming increasingly important as the older adult
population is both growing and becoming more di-
verse; by 2020 racial and ethnic minority groups are
projected to make up approximately 25 percent of the
older adult population (­Administration on ­Aging,
2008). Currently, most caregiver interventions do not
take into account cultural differences and the as­
sociated differences in burden, coping, and support
­between racial or ethnic groups. In a meta-analysis of
interventions that were stratified by ethnic or cultural
group, it was found that African American CGs im-
proved in relevant outcomes when the interventions
included multicomponent skills training or social sup-
port interventions. Among Hispanic CGs, skills train-
ing and psychoeducational interventions were useful.
Among Asian American CGs, providing at-home care
and being sensitive to language differences were im-
portant (­Napoles et al., 2010). A review of interven-
tions aimed at Hispanic CGs concluded that they were
more likely to participate if the services provided were
culturally appropriate (for example, emphasis on reli-
giosity, and familism, and access to bilingual health
care workers) (­Llanque & E ­ nriquez, 2012). Overall,
there is a need for more CG interventions tailored to
minority groups that address cultural attitudes, percep-
tions of discrimination, and environmental barriers to
accessing care (­Napoles et al., 2010).
Religion and Spirituality
One of the most consistent cultural CG differences is
use of religion, prayer, and faith as coping mechanisms
e164
(­R. S. Hebert, ­Weinstein, ­Martire, & ­Schulz, 2006).
Studies have found that being African American is
associated with higher levels of religiosity among
caregivers, and in turn this is associated with better
coping and higher quality of life in the CR (­Nagpal,
­Heid, Z­ arit, & W
­ hitlatch, 2015). Religious involve-
ment has been associated with better health, psycho-
logical well-being, and increased social support (­R. S.
Hebert et al., 2006). Further more, aspects of religios-
ity may promote subjective feelings of greater self-­
esteem and self-efficacy (­R. S. Hebert et al., 2006),
indicating that the benefits associated with religios-
ity and faith are inherently helpful in coping with
caregiving (­R. S. Hebert et al., 2006; ­Huang, ­Shyu,
­Chen, & ­Hsu, 2009).
Coping Style and Subjective versus
Objective Burden
CG personality, among other factors, influences CG
coping and management style. The subjective burden
of caregiving is based on the CGs’ feelings of incom-
petence, exhaustion, and emotional reactions, and
may not be directly correlated with the objective
burden of caregiving (­de Vugt & V ­ erhey, 2013). Some
traits in CGs, such as higher self-efficacy and self-
esteem, extraversion, agreeableness, and an internal
feeling of control, are associated with lower levels of
burden (­Bruvik, ­Ulstein, ­Ranhoff, & ­Engedal, 2013;
­Melo, M ­ aroco, & de M ­ endonca, 2011; ­van der ­Lee,
­Bakker, ­Duivenvoorden, & ­Droes, 2014). Conversely,
neuroticism is strongly associated with feelings of
burden (­van der ­Lee et al., 2014). It seems that neu-
roticism is higher in female and adult child CGs, and
neuroticism in adult child CGs has been associated
with more rapid cognitive decline in the CR (­Norton
et al., 2013). However, higher levels of neuroticism
are also associated with more personalized and re-
spectful care, as well as a lower likelihood of the CG
withdrawing from the situation when the CR be-
comes difficult (­McClendon & ­Smyth, 2013). Dif-
ferent approaches to caregiving can also affect feelings
of burden. For example, whereas positive approaches
and problem-focused coping are associated with
lower burden, wishful thinking and emotional-­
focused coping are associated with higher levels of
burden (­Papastavrou et al., 2011; ­van der ­Lee et al.,
2014). In addition, CGs with smaller social networks
have higher levels of burden (­van der ­Lee et al., 2014).
It is unclear how much CG personality and coping
styles affect burden. Some research has shown that
these factors significantly influence levels of burden
Health & Social Work  Volume 40, Number 4  November 2015
(­Campbell et al., 2008), whereas other research suggests
that other factors (for example, CR behavioral and
psychiatric symptoms) may be substantially more im-
portant (­van der ­Lee et al., 2014). Still, both CG
personality factors and coping styles can be addressed
in interventions, which could improve CG burden,
and CG and CR quality of life (­Gonyea, ­O’Connor,
­Carruth, & ­Boyle, 2005).
Patient Symptoms and Characteristics
Although both CG and CR quality-of-life outcomes
depend heavily on CG coping and management style,
certain CR factors also affect CG burden and out-
comes. The CR’s behavioral and psychiatric symp-
toms have a significant impact on the CG’s quality of
life and well-being (­Ornstein & G­ augler, 2012). Neu-
robehavioral problems (for example, hyperactivity,
inappropriate affect, and aggression) that are common
in patients with ADRD are associated with greater
CG burden and increased risk of institutionalization
(­Gaugler et al., 2010). Studies have found that CR
behavioral symptoms also predict higher levels of CG
stress as measured by cortisol levels, which are associ-
ated with poorer health outcomes (   ­Jeckel et al., 2010).
CR behavioral symptoms and CG burden appear to
have a bidirectional relationship; poorer memory
performance in CGs was related to an increase in CR
behavioral symptoms, and there is a significant inter-
action between CG memory performance and sense
of competency (­de Vugt et al., 2006). Regardless of
the direction of the relationship, both CGs and
ADRD CRs would benefit from interventions aimed
at managing behavioral symptoms.
CG SATISFACTION
Although many CGs experience feelings of burden
and stress associated with their role, some CGs also
derive feelings of satisfaction from their duties. It is
thought that CG satisfaction is not the opposite of
burden, but rather they are two separate entities that
can occur simultaneously (­Folkman, 1997). Like bur-
den, CG satisfaction is a subjective feeling, often
characterized by feelings of purposefulness and per-
sonal growth (­Cheng et al., 2012). CG satisfaction is
associated with being a spousal caregiver, religiosity,
higher levels of competence, not feeling trapped in
the role of caregiver, intrinsic motivation, having a
better previous and current relationship with the CR,
and self-selection into the role (­Quinn, ­Clare, &
­Woods, 2012). Research has suggested that interven-
tions should focus on teaching coping strategies that
Wennberg, Dye, Streetman-Loy, and Pham / Alzheimer’s Patient Familial Caregivers
increase feelings of meaning (­Folkman, 1997), such
as benefit-finding, improving feelings of competence,
practicing techniques for positive reappraisal of the
situation, and reducing feelings of role captivity in
the CG, as these have been associated with greater
levels of both satisfaction and meaning (­Cheng, ­Lau,
­Mak, ­Ng, & ­Lam, 2014; ­Quinn et al., 2012).
CURRENT INTERVENTIONS
Many ADRD CG interventions have been developed
over the past several decades. Strategies include sup-
port group interventions, which are used to normal-
ize experiences and improve social connections and
support; education interventions, which provide
standardized and individualized information and give
CGs tools and skills to solve both CR- and CG-re-
lated problems; psychoeducation interventions; coun-
seling interventions that develop tailored plans based
on individual needs; and respite care interventions
(­Van’t ­Leven et al., 2013). Reviews of interventions
have found mixed, but overall nonrobust, effects on
CG and CR outcomes (­Brodaty & ­Arasaratnam,
2012; ­Van’t L
­ even et al., 2013). Whereas psychosocial
and case management interventions may have mod-
est improvements on CG outcomes, respite care and
communication technology interventions were not
effective (­Schoenmakers, ­Buntinx, & ­DeLepeleire,
2010). Overall, tailored multicomponent interven-
tions with ongoing contact with the dyad are the
most effective (­Olazaran et al., 2010). This is also an
area in which social work strengths-based approaches
could play a vital role (­Kam-Shing, 2005).
Counseling and Behavioral Management
Approaches
Combinations of counseling and behavioral interven-
tions have been tested in numerous CG populations.
Of note, the New York University Caregiver Inter-
vention (­Gaugler, R ­ oth, H
­ aley, & M
­ ittelman, 2011),
Project CARE (­Gonyea, ­O’Connor, & ­Boyle, 2006),
and STAR (­Teri, ­McCurry, ­Logsdon, & ­Gibbons,
2005) have shown some success in improving CG
burden. New York University Caregiver Intervention
provided tailored family counseling and support
group participation to CGs, which reduced burden
and depressive symptoms in CGs (­Gaugler et  al.,
2011). Project CARE and STAR taught CGs behav-
ioral techniques aimed at reducing behavioral and
mood problems in the CR, as well as relaxation tech-
niques for the CG and strategies for increasing pleasant
activities and social support. Both interventions showed
e165
reductions in CR behavioral or mood problems, and
STAR showed decreases in CG depression, burden,
and reactivity (­Gonyea et al., 2006; ­Teri et al., 2005).
STAR trained community health care professionals
to be consultants, and used these consultants to train
CGs and be the point of contact; consultants were
also encouraged to individualize the interventions to
each dyad. This approach showed that CG interven-
tions could be relatively easily implemented in clini-
cal settings (­Teri et al., 2005).
The REACH Programs
Resources for Enhancing Alzheimer’s Caregiver
Health (REACH) I and II (­Schulz et  al., 2003),
REACH VA (­Nichols, ­Martindale-Adams, ­Burns,
­Graney, & ­Zuber, 2011), and REACH OUT (­Burgio
et al., 2009) programs use care management teams,
including dementia specialists, primary care physicians,
nurses, and social workers, to assess and create indi-
vidual care management plans for each dyad. REACH
I was a multisite study that mixed psychosocial, psy-
choeducational, behavioral, environmental modifica-
tion, and technology interventions (­Wisniewski et al.,
2003). REACH aimed to standardize measurement of
outcomes; the sites measured CG mental health and
well-being, depressive symptoms, social supports, bur-
den, religiosity, and service utilization; CG and CR
physical health and medication use; and CR behavioral
and cognitive symptoms (­Wisniewski et al., 2003).
REACH II incorporated the stress process model,
which states that different types of stressors and how
CGs appraise these stressors affect various outcomes
and CGs differently (­Hilgeman et  al., 2009). The
REACH II intervention, which included skills training
for behavioral problems, telephone support groups,
and education tailored to individual variations in risk,
resulted in decreases in CG depressive symptoms and
burden, improved self-care, healthy behaviors, and
social support, as well as decreases in CR behavioral
problems (­Basu, ­Hochhalter, & ­Stevens, 2015; ­Lykens,
­Moayad, ­Biswas, ­Reyes-Ortiz, & ­Singh, 2014). Results
from REACH II trials also suggest that different racial
groups may benefit most from specifically tailored
­intervention targets. It is important to note that
­economic analyses in REACH have shown that the
intervention is cost effective. After six months in the
REACH II program, for only $5.00 per day, CGs had
one extra hour free from caregiving per day—a sig-
nificant benefit for the CG (­Nichols et al., 2008).
REACH OUT adapted the REACH II program
for use through Area Agencies on Aging (­Burgio
e166
et al., 2009). REACH OUT had less contact between
the CG and interventionist to make it more feasible
in the real world, as opposed to a clinical trial setting,
but the same techniques were used as in REACH II
(­Burgio et al., 2009). REACH OUT showed de-
creases in CG burden, depressive symptoms, reactiv-
ity, and frustration; improved CG self-rated health,
sleep, and social supports; and a decrease in CR be-
havioral problems (­Burgio et al., 2009). Similarly,
REACH VA provided care to homebound veterans
through Veterans Administration staff members and
trained familial CGs; it also showed improvements in
CGs and CRs (­Nichols et al., 2011).
FUTURE DIRECTIONS AND CONCLUSIONS
It is important to increase awareness about the risks
of caregiving. Successful CG interventions should
take a comprehensive, holistic approach to address-
ing the needs of the CG–CR dyad. Evidence sug-
gests that for an intervention to be effective, it must
consist of multiple components; be individualized
and person centered, possibly by using a care service
“menu” of options for each dyad or family based
on their desires and needs; and should involve both
the CG and CR, while maintaining patient dignity
(­Brodaty & A ­ rasaratnam, 2012; ­Olazaran et al., 2010;
­Van’t L ­ even et al., 2013). In this way, CGs would par-
ticipate in therapies that are most effective for their
situation, without feeling overwhelmed by a myriad
of additional strategies.
Future interventions would benefit from expanded
implementation of interdisciplinary team models of
care. These care teams are successful when they in-
clude physicians, nurses, and social workers (­Burgio
et al., 2009; ­Nichols et al., 2011). Training laypersons
to be “health partners” or “health coaches” could aug-
ment the responsibilities of clinicians, reduce costs,
create a more formalized personal care network, and
provide another point of contact for the CG (­Dye,
­Williams, & ­Evatt, 2015). Improved communication
and interaction between the care team and dyad would
allow for the CGs to be more involved in the care
decisions, thus giving them a sense of mastery and
self-efficacy. Considerations should also be made for
CGs who have higher rates of neuroticism and anxiety,
who may be more likely to self-select into the role,
and who may need more supports and coping strate-
gies (­Lockenhoff, ­Duberstein, ­Friedman, & ­Costa,
2011).
Given the aforementioned evidence indicating
that spiritual practices and involvement in religious
Health & Social Work  Volume 40, Number 4  November 2015
activities and communities can be beneficial for CGs
across multiple domains (for example, increased social
support and providing a sense of meaning), we recom-
mend researching the incorporation of spiritual prac-
tices to mitigate stress for both CRs and CGs, in dyads
who are receptive to this approach (­Hodge & ­Sun,
2012; ­Sun, ­Roff, ­Klemmack, & B ­ urgio, 2008). As the
older adult population becomes more diverse, it is
becoming increasingly important to consider how
interventions can be tailored to different racial and
ethnic groups. Similarly, considering gender differ-
ences will be equally important. Social workers will
be particularly important for extending intervention
efforts to include more diverse families, and to provide
care to and protect vulnerable populations. Finally,
CG interventions may benefit from taking advantage
of strategies that have been shown to improve cogni-
tive performance in older adults (for example, aerobic
exercise and cognitive training) (­Lautenschlager,
­Anstey, & ­Kurz, 2014). Because the risk of dementia
is so great in CGs, we believe it is important to take
steps toward reducing this risk, in addition to alleviat-
ing burden. Inclusion of this type of intervention as a
component of a program would also work toward
providing a more holistic approach to health and qual-
ity of life.
Because CGs are at risk of developing a wide range
of negative outcomes, frequent monitoring of CG
mental and physical health, with an emphasis on
maintenance of the CG’s overall well-being, is an im-
portant consideration for future interventions. Our
own unpublished pilot work has shown that it is im-
portant to use group activities in memory health pro-
grams for both CGs and CRs, separately and together,
because of the benefits achieved from socialization.
We advocate for population health through individu-
alized care using a holistic, community-driven ap-
proach, which would benefit both the ­CG–CR dyad
care and geriatric care as a whole.
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Alexandra Wennberg, PhD, is postdoctoral fellow, Department
of Health Sciences Research, Mayo Clinic, 205 3rd Avenue SW,
Rochester, MN 55904; e-mail: wennberg.alexandra@mayo.edu.
Cheryl Dye, PhD, is professor, Department of Public Health
Sciences, and director, Institute for Engaged Aging, Clemson Uni­
versity, Clemson, SC. Blaiz Streetman-Loy, LMSW, is direc­
tor of social services, Covenant Dove Healthcare, Greenville, SC.
Hiep Pham, MD, is a family physician, Spartanburg Regional
Healthcare System, Spartanburg, SC.
Original manuscript received August 8, 2014
Final revision received October 29, 2014
Accepted November 18, 2014
Advance Access Publication August 25, 2015
e169
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