Practice Issues

Caregiver Stress
Address correspondence to
Dr Amy E. Sanders,
State University of New York

and the Patient

Upstate Medical
University, 750 East Adams St,
Jacobsen Hall 1012,
Department of Neurology,

With Dementia Syracuse, NY 13210,

anysnaders@gmail.com.
Relationship Disclosure:
Dr Sanders served as an
Amy E. Sanders, MD, MS, FAAN expert medical witness for
Gilreath Law Firm.
Unlabeled Use of
Products/Investigational
ABSTRACT Use Disclosure:
Dr Sanders reports no disclosure.
Informal caregivers (often, but not exclusively, family members) are essential to the
* 2016 American Academy
clinical care of a patient with dementia. Most caregivers are untrained and unpaid. of Neurology.
As a result, caregivers often experience stress caused by the caregiving experience;
they are the invisible second patients in dementia care. Clinicians can help
caregivers by supporting them in their role and by referring them to additional
resources for support.

Continuum (Minneap Minn) 2016;22(2):619625.

Case
An 81-year-old man presented with symptoms of escalating memory loss
experienced for the past 18 months. A retired geologist, he first became
concerned about his memory when he misplaced his favorite soil sampling
kit, only to find it several months later at the bottom of the laundry hamper.
In his spare time, he had long enjoyed directing a barbershop quartet, but
had begun to note more recently that he was having trouble harmonizing,
and for the 3 months prior to presentation, he specifically expressed
difficulty remembering the lyrics to well-known songs. The week before
he came to the office, he woke up at midnight, thought it was morning,
and went to the supermarket to shop, only to find it dark and closed.
The patient previously had been diagnosed with hypertension and
osteoarthritis. He was a widower and lived alone; his eldest daughter lived
locally with her own family. The patient stated that his daughter would
likely be the one to help me out, if I should ever need it. His daughter
did not attend the diagnostic visit, citing conflict with her job as a small-business
owner with small children of her own. The patient was diagnosed with
probable Alzheimer disease after a thorough workup, including a caregiver
interview, a neuropsychological evaluation, screening laboratory testing, and
structural brain neuroimaging.

DISCUSSION
A consequence of all diseases that cause dementia is the inevitable total dependence
of the patient upon a caregiver. In most cases, the primary caregiver for the patient
with dementia is an informal one, without specific training or resources to manage
the relentless and exhausting job. Caregiver burden is therefore common in the care
of patients with dementia, which can lead to disastrous outcomes for patient and
caregiver alike.

Continuum (Minneap Minn) 2016;22(2):619625 www.ContinuumJournal.com 619

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.

 Caregiver Stress

Caregiving is the process of caring for another persons health needs. A

synthesis of data collected by the Alzheimers Association suggests that 65% of
caregivers of people with Alzheimer disease and other dementias are women;
21% are 65 years old and older; 40% had some college education or had received
a degree; 64% were currently employed, a student, or a homemaker; and 71%
were married or in a long-term relationship.1 According to data from the National
Alliance for Caregiving and the American Association for Retired Persons
analyzed by the Alzheimers Association, white caregivers are more likely to be
caring for a parent than African American or Hispanic caregivers; however,
African American and Hispanic caregivers, on average, spend more hours weekly
engaged in caregiving than white caregivers and are more likely to experience
high levels of burden from the caregiving role (57% in African American and
45% in Hispanic versus 33% in white individuals). This care comes at a high
cost. The Alzheimers Association estimates that in 2014, unpaid caregivers
provided 17.7 billion hours of care, valued at approximately $220 billion. Higher
health care costs for caregivers were estimated at more than $9 billion.1

Case Continued
The patient was started on donepezil monotherapy, titrated from 5 to
10 mg/d, and did well for the ensuing 2 years. When his daughter
finally accompanied him to an appointment, she sat quietly for much of the
visit, but occasionally sighed loudly or shook her head as though she
disagreed with statements from her father. Finally, when asked if there was
anything else that needed to be discussed, the daughter exclaimed, Well, he
cant find the bathroom anymore, and last week he urinated in the coat
closet. I try to help him get to the right place, and he hits me! Frankly, I dont
have time for this! Cant you prescribe him something?

In formal and theoretical terms, caregiver stress has been defined as the
unequal exchange of assistance among people who stand in close relationship
to one another, resulting in emotional and physical stress on the caregiver.2
According to data from the Behavioral Risk Factor Surveillance System reported
by Anderson and colleagues,3 older (more than 65 years of age) caregivers appear
to be more resilient in the caregiving role than their younger (ages 18 to 64)
counterparts, reporting significantly less mental distress and dissatisfaction with
life, even in the face of poorer personal health and more physical distress. Studies
investigating factors related to caregiver burden report that burden is inversely
related to cognitive function in the person with dementia, with caregiver burden
rising as cognitive ability in the care recipient declines. Caregiver burden is seen
when caring for all stages of patients with Alzheimer disease with behavioral issues.
Caregiver burden is also seen when caring for patients with mild to moderate
Alzheimer disease with impairment in instrumental activities of daily living.4
Neurologists and other clinicians providing primary care to patients with de-
mentia should consider the patient-caregiver relationship as a dyad, one in which
the caregiver often functions as a secondary patient.5 The underlying psychody-
namic relationship between the patient and caregiver, and the caregivers intrinsic
personality traits, contribute in important ways to the caregiving experience. Some
caregivers experience the caregiver role in a predominantly positive way, but many

620 www.ContinuumJournal.com April 2016

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.

do not (Practice Table 1).6,7 Caregiver burnout can lead to dire outcomes. A
recent systematic review of risk factors for elder abuse in community-dwelling
older adults found that the highest odds for abuse were associated with family
disharmony and low levels of social support.8

PRACTICE TABLE 1 Positive and Negative Outcomes for the Caregiver

of Caring for Individuals With Dementia

b Positive Outcomes
Sense of personal accomplishment
Fostering family togetherness
Satisfaction of helping others
b Negative Outcomes
Stress and burden
Anxiety (new or increased)
Sleep deprivation and other disruptions of good sleep hygiene
Depression
Decreased participation in recreation, work, or self-care
Social isolation
Financial hardship
Declining physical health
Increased risk of cognitive decline7

More than 100 clinical instruments are available to assess caregiver stress and
burdens. The original and modified Zarit Burden Interview (Practice Table 29Y11)
is considered by dementia researchers to be the most useful.12 Numerous Internet
resources are available to help guide and support family and other informal
caregivers (refer to the useful website section at the end of this article). Local
organizations, such as senior centers, may have adult day care programs that
offer the person with dementia a chance to be social and the opportunity to
participate in planned and supervised activities designed to promote well-being,
such as music and exercise. Senior centers or other local services for older adults
may also offer support groups, providing caregivers with a safe place to meet
and develop a mutual support system. Local organizations may also be able to
provide initial links to aging resources, including those for transportation and
elder care legal advice. Finally, nursing homes may have respite care available,
providing caregivers with a temporary rest from caregiving, while the person with
dementia continues to receive care in a safe environment. A clinician who is
familiar with the scope of challenges that can confront caregivers and is willing to
spend time providing caregiver guidance is a valuable resource.
Caregiver stress often occurs when a patient exhibits noncognitive neuro-
psychiatric symptoms. Some of these behaviors are vegetative, such as apathy
and depression, and many involve patient behavioral challenges. These

Continuum (Minneap Minn) 2016;22(2):619625 www.ContinuumJournal.com 621

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.

 Caregiver Stress

PRACTICE TABLE 2 Screening and Short Zarit Burden Interview for

Caregivers of Cognitively Impaired Adultsa,b

Screening Short
Version Version
Do You FeelI Question Question
1. that because of the time you spend with your relative ! !
that you dont have enough time for yourself?
2. stressed between caring for your relative and trying ! !
to meet other responsibilities (work/family)?
3. angry when you are around your relative? !
4. that your relative currently affects your relationship !
with family members or friends in a negative way?
5. strained when you are around your relative? ! !
6. that your health has suffered because of your !
involvement with your relative?
7. that you dont have as much privacy as you would like !
because of your relative?
8. that your social life has suffered because you are !
caring for your relative?
9. that you have lost control of your life since your !
relatives illness?
10. uncertain what to do about your relative? ! !
11. you should be doing more for your relative? !
12. you could do a better job in caring for your !
relative?
a
Original Zarit Burden Interview printed in Zarit SH, et al, New York University Press.9 Screening and
short versions reprinted from Bedard M, et al, Gerontologist.10 gerontologist.oxfordjournals.org/
content/41/5/652.full.pdf?ck=nck. B 2001 The Gerontological Society of America.
b
Answers are scored Never (0), Rarely (1), Sometimes (2), Quite Frequently (3), Nearly Always (4), and
scores are summed. The total score of the short version of the Zarit Burden Interview will range
from 0 to 48. Epidemiologic comparative effectiveness studies reported a mean (standard deviation)
of 15.1 (10) in caregivers for people with dementia.11

behaviors can arise from disorders of thought (eg, delusions, hallucinations),

disorders of mood (eg, irritability, emotional lability, depression, apathy, or out-
bursts), or disorders of activity (eg, agitation, verbal or physical aggression, socially
inappropriate behaviors, wandering, purposeless hyperactivity, repetitive behav-
iors, impulsivity, and others).13 The DICE (describe, investigate, create, and evaluate)
approach helps the caregiver evaluate the problem in a constructive, organized, and
fruitful manner.14 (For more information on the DICE approach, refer to Figure 11-2
in the article Psychiatric Aspects of Dementia by Chiadi U. Onyike, MD, MHS,
in this issue of Continuum.15) In this approach, caregivers are asked first to
describe the problematic behavior. In the case in this article, the patient was
getting lost at night and mistaking another room for the bathroom. Next, the
caregiver and clinician together can investigate potential causes contributing to the
undesirable behavior. The third step is to create a treatment plan, which, in this

622 www.ContinuumJournal.com April 2016

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.

case, included a brainstorming session with the patient, caregiver, and clinician.
These sessions may yield a creative, yet simple, solution. Finally, a solution is
proposed that can then be evaluated. Collaboration demonstrates to the caregiver
that solutions are being explored, allows the clinician to model problem-solving
behavior, and increases buy-in from patient and caregiver.

Case Continued
The DICE (describe, investigate, create, and evaluate) approach was proposed
to the patient and the caregiver. The daughter was asked to evaluate the
situation at home, and she noted that the patients bedroom is at one end
of a hallway, and the bathroom at the other end. A plan was initiated to
install a series of night lights in the hallway and in the bathroom so that
the way would always be illuminated.

CONCLUSION
In patients with dementia, the severity and rate of progression of cognitive
and behavioral symptoms are idiosyncratic, making it difficult to predict the
nature of the challenges that a given patient and his or her caregiver will ex-
perience. There will be challenges, and helping to guide the caregiver and
patient dyad through the difficult times is an essential aspect of providing good
clinical care for the patient with dementia.

USEFUL WEBSITES
The following websites are useful resources for family and other informal care-
givers of individuals with dementia.
Alzheimers Association. The Alzheimers Association provides information on
local chapters and national offices, support groups, educational resources, as
well as a 24-hour helpline.
www.alz.org
Alzheimers Disease Education and Referral Center. Part of the National
Institutes of Health National Institute on Aging, the Alzheimers Disease
Education and Referral Center provides individuals with Alzheimer disease and
their caregivers with caregiving tip sheets and links to the National Institute on
Aging resources and Eldercare locator.
www.nia.nih.gov/alzheimers
Alzheimers Foundation. The Alzheimers Foundation provides caregiving tip
sheets and access to online support groups and caregiver training.
www.alzfdn.org
The Association for Frontotemporal Degeneration. The Association for
Frontotemporal Degeneration provides information on caregiver support
groups as well as tip sheets for caregivers, patients, and physicians on behavioral

Continuum (Minneap Minn) 2016;22(2):619625 www.ContinuumJournal.com 623

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.

 Caregiver Stress

techniques that can be helpful in dealing with some of the most challenging
behaviors in patients with frontotemporal degeneration.
www.theaftd.org
Caregiver Action Network. The Caregiver Action Network offers situation-
specific caregiver education such as to new caregivers and individuals who care
for their aging parents while raising their own children.
www.caregiveraction.com
Family Caregiving Alliance. The Family Caregiving Alliance provides education
materials for caregivers as well as information on caregiver policy and advocacy.
www.caregiver.org
Homewatch Caregivers. Homewatch Caregivers provides tip sheets and additional
education resources to those caring for patients with dementia.
www.homewatchcaregivers.com
Lewy Body Dementia Association. The Lewy Body Dementia Association
supports those affected by Lewy body dementia, their families, and their caregivers,
and is dedicated to raising awareness and promoting scientific advances.
www.lbda.org
Strength for Caring. Strength for Caring provides caregiver education and
information on care for the caregiver.
www.strengthforcaring.com

REFERENCES
1. Alzheimers Association. 2015 Alzheimers disease facts and figures. Alzheimers Dement
2015;11(3):322Y384.
2. Llanque S, Savage L, Rosenburg N, Caserta M. Concept analysis: Alzheimers caregiver stress
(published online ahead of print May 1, 2014). Nurs Forum. doi:10.1111/nuf.12090.
3. Anderson LA, Edwards VJ, Pearson WS, et al. Adult caregivers in the United States:
characteristics and differences in well-being, by caregiver age and caregiving status. Prev Chronic
Dis 2013;10:E135. doi:10.5888/pcd10.130090.
4. Kamiya M, Sakurai T, Ogama N, et al. Factors associated with increased caregivers burden in
several cognitive stages of Alzheimers disease. Geriatr Gerontol Int 2014;14(suppl 2):45Y55.
doi:10.1111/ggi.12260.
5. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci
2009;11(2):217Y228.
6. Zarit SH. Positive aspects of caregiving: more than looking on the bright side. Aging Ment Health
2012;16(6):673Y674. doi:10.1080/13607863.2012.692768.
7. Vitaliano PP, Murphy M, Young HM, et al. Does caring for a spouse with dementia promote
cognitive decline? A hypothesis and proposed mechanisms. J Am Geriatr Soc 2011;59(5):900Y908.
doi:10.1111/j.1532-5415.2011.03368.x.
8. Johannesen M, LoGiudice D. Elder abuse: a systematic review of risk factors in
community-dwelling elders. Age Ageing 2013;42(3):292Y298. doi:10.1093/ageing/afs195.
9. Zarit SH, Orr N K, Zarit JM. The hidden victims of Alzheimers disease: families under stress.
New York, NY: New York University Press, 1985.
10. Bedard M, Molloy DW, Squire L, et al. The Zarit Burden Interview: a new short version and
screening version. Gerontologist 2001;41(5):652Y657. doi: 10.1093/geront/41.5.652.

624 www.ContinuumJournal.com April 2016

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.

11. Higginson IJ, Gao W, Jackson D, et al. Short-form Zarit caregiver burden interviews were valid in
advanced conditions. J Clin Epidemiol 2010;63(5):535Y542. doi:10.1016/j.jclinepi.2009.06.014.
12. Van Durme T, Macq J, Jeanmart C, Gobert M. Tools for measuring the impact of informal
caregiving of the elderly: a literature review. Int J Nurs Stud 2012;49(4):490Y504. doi:10.1016/
j.ijnurstu.2011.10.011.
13. Odenheimer G, Borson S, Sanders AE, et al. Quality improvement in neurology: dementia
management quality measures. Neurology 2013;81(17):1545Y1549. doi:10.1212/
WNL.0b013e3182a956bf .
14. Kales HC, Gitlin LN, Lyketsos CG. Management of neuropsychiatric symptoms of dementia in
clinical settings: recommendations from a multidisciplinary expert panel. J Am Geriatr Soc
2014;62(4):762Y769. doi:10.1111/jgs.12730.
15. Onyike CU. Psychiatric aspects of dementia. Continuum (Minneap Minn) 2016;
22(2 Dementia):600Y614.

Continuum (Minneap Minn) 2016;22(2):619625 www.ContinuumJournal.com 625

Copyright American Academy of Neurology. Unauthorized reproduction of this article is prohibited.