Meeting the Needs of
Caregivers of
Persons With Dementia
An Important Role for Occupational Therapy
O
ccupational therapists
and occupational
therapy assistants
should expect to work
with persons with demen-
tia now and into the future. Currently,
an estimated 5.4 million Americans are
diagnosed with Alzheimer’s disease
and related dementias (ADRD), which
means 1 in 8 adults ages 65 and older
(13%) have dementia.1 If current
trends continue, by 2030 the number
of persons over age 65 diagnosed with
ADRD is estimated to be 7.7 million.
This is a 50% increase from the cur-
rent number.1 Persons with ADRD can
present with a unique constellation of
needs based on the changes associ-
ated with the particular diagnosis. The
symptoms of ADRD, including loss
of intellectual functioning, changes
in personality and mood, and/or the
manifestation of problematic behaviors,
can make caregiving a very difficult and
complicated task. Because of occupa-
tional therapy’s holistic approach, it is
appropriate and imperative that the
profession be a leader in research, edu-
cation, and practice efforts with regard
to dementia care, which must include
the needs of caregivers.
CAREGIVERS OF PERSONS WITH
DEMENTIA
Care for persons with dementia is
provided by formal (paid) and informal
(unpaid) caregivers. Seventy percent
of persons with ADRD live at home
8 MARCH 26, 2012 • WWW.AOTA.ORG
CATHERINE VERRIER PIERSOL n TRACEY VAUSE EARLAND n E. ADEL HERGE
The occupational therapy profession must consider the needs
of caregivers in its efforts to build research, education, and
practice in dementia care.
and are supported by informal care-
givers1—typically, relatives or friends
who provide daily care and oversight.2
Nearly 15 million informal caregivers
are providing 80% of the care for a per-
son with ADRD in the home, totaling an
estimated 17 billion hours, which aver-
ages 21.9 hours of care per caregiver
per week.1 Most of these caregivers are
women (60%), aged 55 or older (56%),
married (66%), and have less than a
college degree (67%). More than half
of caregivers are the primary bread-
winners of the household (55%) and
nearly half are employed full or part
time outside the home (44%).1
Often, caregivers are told by health
care providers only the types of
activities or functions that their family
member with dementia can no longer
do. The heart of occupational therapy
intervention for persons with demen-
tia focuses on what the person with
dementia can do—that is, his or her
functional capacity to perform daily
activities. Thus, occupational therapy
practitioners bring important profes-
sional skills and expertise to the care
of patients with dementia and the
education and support of caregivers.
Over time, the person with dementia
requires more assistance and supervi-
sion with daily activities and routines
for safety as physical, sensory, and
cognitive functions decline. Family
caregivers must often provide this
care; however, they may not possess
the knowledge and skills to effectively
function in this role. Caregivers often
experience distress, depression, emo-
tional upset,1 and anxiety,3 and they are
at high risk for poor physical and emo-
tional health and decreased quality of
life.2,4 The responsibilities of caregiving
can disrupt routines of employment,
leisure exploration, social participa-
tion,5,6 and health maintenance.7
Caregiver stress frequently
increases when the person with demen-
tia exhibits challenging behaviors
that typically manifest as part of the
disease. Examples of such behaviors
include agitation, wandering or exces-
sive moving, refusing or resisting care,
inappropriate or destructive behaviors,
physical or verbal aggression, rummag-
ing and hoarding, or distressful feelings
or beliefs.8 Evidence suggests that fam-
ily caregivers find these behaviors very
disturbing and difficult to manage.8–10
Research indicates that persons with
dementia have a higher rate of negative
 A woman with dementia and
her caregiver read a birthday card.
behavior symptoms when their family
caregivers are stressed.11
OCCUPATIONAL THERAPY AND
FAMILY CAREGIVERS
Successful approaches and techniques
used when caring for a family member
with dementia may be counterintui-
tive to caregivers. In fact, their best
intentions may actually trigger certain
types of behaviors. For example, not
correcting a mistake or going along
with something that is not true may
feel deceitful and wrong to the fam-
ily member providing care; however,
this strategy can minimize anxiety and
other problematic behaviors in the
PHOTOGRAPH © STEVE DUNWELL / AGE FOTOSTOCK / GETTY IMAGES
person with dementia. Research shows
that family caregivers need and benefit
from training in managing behaviors
and promoting function in their family
member.5,12–14 Evidence suggests that
interventions that include the care-
giver have been effective in improv-
ing the occupational performance of
the individual with ADRD as well as
increasing caregiver competence and
skill at managing challenging behaviors;
reducing caregiver stress, anxiety, and
depression; and improving caregiver
sense of health.3
OT PRACTICE • MARCH 26, 2012
Occupational therapy practitioners
are in a unique position to help families
understand the disease process, set up
or modify daily routines, provide train-
ing on effective strategies to manage
difficult behaviors, and teach family
caregivers ways to reduce their own
stress and take care of themselves.15
Evidence-based practical approaches
are effective in helping family caregiv-
ers manage the care for persons with
dementia.
CONCEPTUAL FRAMEWORKS
GUIDING PRACTICE
Conceptual frameworks offer a founda-
tion for occupational therapy practi-
tioners to approach family caregiver
education. These frameworks are built
on what we know about reducing the
stress in the environment. Through the
use of these frameworks, occupational
therapists can develop approaches,
treatment goals, and interventions that
improve the competency of the care-
giver and ultimately the participation
in daily activities of the person with
dementia.
A few frameworks describe the
interaction between the person with
dementia and his or her environment.
The Competence–Environmental Press
Model suggests that the interchange of
the declining competency of the person
with dementia, and the physical and
social environments presenting greater
demands, leads to maladaptive behav-
ior and dysfunctional outcomes.16 As
the caregiver simplifies components of
the multi-layered environment to align
with the person’s reduced competency,
he or she may display less excess
disability.17 Training the caregiver to
obtain that “just-right fit” between
individual capabilities and external
environmental demands results in posi-
tive behaviors and enhanced quality
of life for both the caregiver and the
individual with dementia.
The Progressively Lowered Stress
Threshold model views dysfunctional
behavior as a response in part to the
build up of environmental stressors
that overwhelm the capacity of the
individual with dementia.18,19 By
teaching the caregiver how to modify
environmental demands that exceed
functional capacity, the individual with
dementia will exhibit less occupational
dysfunction. The caregiver can pro-
mote more adaptive behavior by regu-
lating activity and stimulation levels
9
for the person with dementia. As the
caregiver understands behaviors and
management strategies, he or she can
recognize the signs of early anxiety or
agitation and intervene promptly, pre-
venting further dysfunctional behavior.
The Need-Driven Dementia–Com-
promised Behavior model proposes
that the behavior is an expression of
unmet needs of the individual with
dementia and is caused by interaction
between stable factors and environ-
mental factors. The stable factors (e.g.,
personality, disease-related losses) are
immutable, but it is possible for the
caregiver to modify environmental fac-
tors to promote function and prevent
disruptive behaviors.8
Lastly, the Antecedent–Behav-
ior–Consequences (ABC) model
complements the previous frameworks
in understanding dementia-related
behaviors.8 This model instructs the
A daughter takes a moment to talk to her father, who has dementia, about what he’ll be doing that day.
caregiver to identify the stimulus
(antecedent) that triggers a specific
behavior and clearly define and analyze
the potential consequences. Based on can trigger a positive or negative actual space in which the person
the ABC model, the caregiver must reaction in the person with dementia. with dementia lives can help them
evaluate each behavior to determine Caregivers often have difficulty elimi- make these associations. Character-
how often and how long it occurs and nating extraneous information and istics to look for and to explain to
how dangerous it is, documenting the keeping their communication simple caregivers include:
occurrence accordingly. Through this and direct. Occupational therapy n Avoiding overstimulation (e.g.,
process, the caregiver can identify practitioners can demonstrate and noise) and excess clutter
the specific antecedent(s) that can be role model positive types of com- n Making sure pathways and stair-
modified or eliminated. munication for the caregiver. Specific ways are clear
strategies include: n Placing sharp objects and hazard-
EFFECTIVE STRATEGIES n Providing direct, simple, one-step ous materials out of sight
TO TEACH CAREGIVERS cues that can be easily under- n Adjusting the lighting to be sure
The frameworks described serve to stood and avoiding abstract, it is adequate
guide the caregiver in reducing or open-ended questions n Considering room temperature or
managing those modifiable factors that n Going along with the person odors that may be unpleasant or
place excess demand, or pressure, on when appropriate, rather than distressing
the individual with dementia. As care- arguing or trying to explain or 3. Simplify the task or routine. Occupa-
givers struggle with the progressively reason tional therapists are skilled in the
complex behaviors that often mani- n Redirecting or distracting process of activity analysis and can
fest as part of dementia, occupational the person when agitated or use this approach with caregivers.
therapy practitioners can teach them distressed The person with dementia may be
how the social and physical environ- n Considering what the person deemed unable to perform a task,
ments influence behavior, and model needs to know and when he or when in fact a simple strategy that
strategies that help to facilitate occupa- she needs to know it reduces its complexity and pro-
tional performance in the person with n Using words of encouragement motes initiation can improve partici-
dementia.13,14 Four types of strategies and positive statements pation and reduce the caregiver’s
PHOTOGRAPH © ED KASHI / CORBIS

can increase caregiver confidence in stress. Some examples include:

reducing challenging behaviors and
promoting occupational performance in
the person with dementia.13,14
1. Simplify communication. Verbal and
nonverbal communication approaches
10
2. Modify the environment and make it
safe. Caregivers may not completely
understand the effect that the physi-
cal environment can have on their
family member. Providing caregiv-
ers with specific examples from the
n Establishing and maintaining a
simple routine
n Setting out and arranging needed
items in advance
n Breaking down the task or activ-
ity into smaller, manageable steps
MARCH 26, 2012 • WWW.AOTA.ORG
 n Labeling drawers, containers, or
cabinets to provide visual cues;
words or pictures can be used
depending on the ability of the
person with dementia
n Allowing additional time for tasks
and activities
4. Enhance activity engagement. Persons
with dementia may stop engag-
ing in activities because they lack
initiative or find the activities
too demanding. Yet activities are
extremely important to help fill the
time and uphold individual identity.
In addition, activities can reduce
problematic behaviors and provide
a sense of social connectedness and
belonging.20 Exploring past inter-
ests can help to identify activities
that can be designed for the person
with dementia. Effective activities
capitalize on preserved capabilities
and support lifelong roles; and are
familiar, repetitive, and require one
or two simple steps.20 It is impor-
tant to teach families that mistakes
and errors are likely to occur and
that the focus or goal of the activity
should be on the participation, not
the end product.
The following case story about
Gloria and her mom, Mrs. J., exempli-
fies the approaches and strategies
presented. The occupational therapy
plan of care addresses Mrs. J.’s occupa-
tional performance and safety, as well
as enhancing Gloria’s competency as an
effective caregiver.
CASE ExAMPLE: GLORIA
Gloria is a 50-year-old single admin-
istrative assistant at a publishing
company who cares for her 82-year-
old mother. Mrs. J. has a diagnosis of
Alzheimer’s disease with moderate
cognitive impairment, and osteoarthri-
tis. She has lived with Gloria for the
last 3 years, in a ranch-style home with
two steps and a railing at its entrance.
Mrs. J. recently returned home from
a 6-week stay in a rehabilitation and
skilled nursing facility after falling.
She broke her left wrist, sprained her
lower back, and experienced a signifi-
cant change in mental status after the
fall. Prior to hospitalization, Mrs. J.
attended an adult day center daily. Glo-
ria plans to continue this routine but
OT PRACTICE • MARCH 26, 2012
for More inforMATion
Caregiver Toolkit
www.aota.org/practitioners/resources/collections/
resources
Alzheimer’s Resources
www.aota.org/alzheimer
Cognition, Occupation, and Participation Across
the Life Span: Neuroscience, Neurorehabilita-
tion, and Models of Intervention in Occupational
Therapy, 3rd Edition
Edited by N. Katz, 2011. Bethesda, MD: AOTA
Press. ($89 for members, $126 for nonmembers.
To order, call toll free 877-404-AOTA or shop online
at http://store.aota.org/view/?SKU=1173B. Order
#1173B. Promo code MI)
AOTA CEonCD™: Determining Capacity To Drive
for Drivers With Dementia Using Research, Eth-
ics, and Professional Reasoning: The Responsi-
bility of All Occupational Therapists
Presented by L. A. Hunt, 2010. Bethesda, MD:
American Occupational Therapy Association. (Earn
.2 AOTA CEU [2.5 NBCOT PDUs/2 contact hours].
$68 for members, $97 for nonmembers. To order,
call toll free 877-404-AOTA or shop online at http://
store.aota.org/view/?SKU=4842. Order #4842.
Promo code MI)
AOTA Self-Paced Clinical Course: Neurorehabilita-
tion for Dementia-Related Diseases
Edited by M. A. Corcoran, 2006. Bethesda, MD:
American Occupational Therapy Association. (Earn
1 AOTA CEU [12.5 NBCOT PDUs/10 contact hours].
$129.50 for members, $184.10 for nonmembers.
To order, call toll free 877-404-AOTA or shop online
at http://store.aota.org/view/?SKU=3022. Order
#3022. Promo code MI)
has taken a short leave of absence from
work to directly care for her mother.
Prior to the most recent fall, Mrs. J.
required minimal assistance with her
showering routine, and set-up assis-
tance and verbal cueing with most other
self-care activities. She participated in
light homemaking activities, such as
clearing the dining table, wiping dishes,
and folding clothes. Mrs. J. was inde-
pendent in functional mobility activities
and enjoyed the various occupations at
the day center. Since returning from the
rehabilitation center, Mrs. J. has become
more resistant to taking a shower in the
morning, stating that she “already took a
shower.” Mrs. J. requires minimal physi-
cal assistance to get out of bed in the
morning. Gloria often rushes her mother
to get ready in the mornings and is met
with resistance and increased agitation.
Many mornings, the situation escalates
to the point where Gloria is frustrated
at her mother’s behavior and loses her
temper. In response, Mrs. J. becomes
extremely agitated and upset, as evi-
Occupational Therapy and Dementia Care: The
Home Environmental Skill-Building Program for
Individuals and Families (w/CD-ROM)
By L. N. Gitlin & M. A. Corcoran, 2005. Bethesda,
MD: AOTA Press. ($49 for members, $69 for
nonmembers. To order, call toll free 877-404-
AOTA or shop online at http://store.aota.org/
view/?SKU=1232. Order #1232. Promo code MI)
AOTA Online Course: Occupational Therapy for
Family, Professional, and Para-Professional
Caregivers of Individuals With Dementia
By M. A. Corcoran, 2003. Washington, DC: George
Washington University. (Earn 1 AOTA CEU [10
NBCOT PDUs/10 contact hours]. $198 for mem-
bers, $280 for nonmembers. To order, call toll free
877-404-AOTA or shop online at http://store.aota.
org/view/?SKU=OLD05. Order #OLD05. Promo
code MI)
Occupational Therapy Practice Guidelines for
Adults With Stroke
By J. Sabari, 2008. Bethesda, MD: AOTA Press.
($59 for members, $84 for nonmembers. To order,
call toll free 877-404-AOTA or shop online at http://
store.aota.org/view/?SKU=2211. Order #2211.
Promo code MI)
CONNECTIONS
Discuss this and other articles on
the OT Practice Magazine public forum
at http://www.OTConnections.org.
denced by restlessness, verbal aggres-
siveness toward her daughter, and a
tense facial expression. An occupational
therapy referral was initiated by Mrs. J.’s
neurologist.
Occupational therapy services were
provided in the home. The occupational
therapist conducted a comprehensive
initial evaluation, including standard-
ized cognitive function assessments and
a home safety evaluation. A key factor
in working with this caregiver was
establishing a partnership that started
with building rapport. As Gloria began
to share information about her caregiv-
ing situation, the occupational therapist
was able to gather relevant information
on management and communication
style, as well as identify the problem
area priorities and behaviors that
were most upsetting to Gloria. It was
important to use Gloria’s language and
validate and build on effective strate-
gies she had already put in place. By
observing Gloria’s management style,
the occupational therapist was able to
11
highlight positive approaches used to
reduce disruptive behaviors and, at the
same time, modify those strategies that
were less effective. Using a collabora-
tive process and the ABC model, Gloria
and the occupational therapist were
able to identify stimuli that trigger Mrs.
J.’s agitation (e.g., rushing through
morning self-care, making demands
that create stress, providing too many
verbal directives, using a harsh tone
of voice). The occupational therapist
educated Gloria about the physical
environment and how that may affect
Mrs. J.’s behavior. They were able to
identify positive, effective communica-
tion strategies to avoid catastrophic
reactions in the morning. For example,
Gloria tried using short phrases when
instructing her mother, breaking down
cues into smaller elements, using words
of encouragement in a calm voice, and
taking a deep breath before respond-
ing to her mother. Likewise, nonverbal
communication can moderate agitation.
Gloria tried maintaining eye-to-eye
contact, using appropriate touch and
physical closeness, and showing Mrs.
J. what to do by demonstration. Using
these strategies resulted in a smoother
morning transition. Gloria was also
willing to simplify the morning routine
by having her mother use the bedrail,
bathe at night using adaptive bathroom
equipment, and eat breakfast at the
day center. Caregiver training included
teaching Gloria how to provide more
direct, simple one-step cues while
getting dressed. Gloria practiced using
distraction and redirecting techniques
through role-playing with the occupa-
tional therapist. Through a collabora-
tive partnership, acceptable strategies
helped reduce environmental stressors,
enhanced Mrs. J.’s participation in self-
care activities, and made the caregiving
situation more controllable.
CONCLUSION
Occupational therapists and occu-
pational therapy assistants are in a
unique position to support and educate
caregivers of persons with dementia.
Determining the functional capacity of
the person with dementia and describ-
ing his or her preserved capacities to
caregivers is a vital role of occupational
therapy. Individualized interven-
tion built on conceptual frameworks,
12
Training the caregiver to obtain that “just-right fit” between individual
capabilities and external environmental demands results in positive
behaviors and enhanced quality of life for both the caregiver and the
individual with dementia.
evidence-based practical approaches,
and expertise in activity analysis
and environmental modification can
increase the caregiver’s competency
while reducing stress, and enhance
the occupational performance of the
person with dementia. n
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Catherine Verrier Piersol, MS, OTR/L, is an assistant
professor in the Department of Occupational Ther-
apy and clinical director of Jefferson Elder Care at
Thomas Jefferson University, in Philadelphia.
Tracey Vause Earland, MS, OTR/L, is an assistant pro-
fessor in the Department of Occupational Therapy
at Thomas Jefferson University.
E. Adel Herge, OTD, OTR/L, is an assistant professor
and director of the Combined BSMS Occupational
Therapy Program at Thomas Jefferson University.
MARCH 26, 2012 • WWW.AOTA.ORG
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