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The Journal of Pain, Vol 8, No 5 (May), 2007: pp 373-378
Available online at www.sciencedirect.com
C ASE R EVIEWS I N P AIN
Pain in Persons With Dementia: Complex, Common, and
Challenging
Joseph Shega, Linda Emanuel, Lisa Vargish, Stacie K. Levine, Heide Bursch, Keela Herr,
Jordan F. Karp, and Debra K. Weiner
Editor’s Note: This article is one in a series of “Case
Reviews in Pain” to be presented by The Journal, designed to share scientific and clinical knowledge in a
case review format. This report presents a discussion of
pain management in a cognitively impaired older adult.
Case Study
A
n 82-year-old woman with moderate Alzheimer’s dementia presents to clinic with worsening agitation, aggression, and social withdrawal for the past 2 weeks. Her family reports that
around the same time the patient injured her right ankle
while transferring from the wheelchair to bed. Since that
time, the patient reports moderate to severe pain continuously in the ankle with little relief from around-theclock ibuprofen. Because of the change in her behaviors,
the dose of her antipsychotic drug, quetiapine, was increased.
On review of systems, the patient complains of a poor
appetite, difficulty sleeping, and not wanting to leave
the house. Other pertinent history includes spinal stenosis and knee arthritis (treated with as needed acetaminophen), depression (treated with sertraline 100 mg
daily), and blindness. She ambulates 2 to 3 steps with
moderate assistance, mostly related to spinal stenosis
and knee arthritis. The patient was diagnosed with Alzheimer’s dementia 4 years ago and is dependent in all of
her instrumental activities of daily living; she is continent
and can feed herself, but needs assistance with bathing,
dressing, and transferring. Cognitively she is oriented to
person, place, and year. She can recall 3 out of 3 words
immediately, but 0 out of 3 words at 5 minutes. Her
attention is intact.
Address correspondence to Judith A. Paice, PhD, RN, Editor, Case Reviews in
Pain; Director, Cancer Pain Program, Northwestern University, Feinberg
School of Medicine, Chicago, IL 60611. E-mail: [email protected]
1526-5900/$32.00
© 2007 by the American Pain Society
doi:10.1016/j.jpain.2007.03.003
Her vital signs are normal, but she lost 7 pounds since
her last visit 1 month ago. The right ankle was swollen
and painful with range of motion, but no skin break or
erythema were noted. An x-ray of the ankle did not reveal a fracture. Ibuprofen was continued and liquid morphine 5 mg orally every 6 hours was added along with an
appropriate bowel regimen. Within a few days, the patient’s pain decreased to a mild intensity, her appetite
improved, she became more social, and the agitation
resolved without increased confusion or sedation. This
allowed the quetiapine dose to be decreased to the previously prescribed level.
Case provided by Joseph Shega, MD*
Linda Emanuel, MD, PhD†
*Division of Hematology-Oncology
†
Director, Beuhler Center on Aging
Northwestern University
Feinberg School of Medicine
Chicago, IL
Manifestations of Pain in Cognitively
Impaired Older Adults
Dementia is one of the leading causes of disability and
diminished quality of life in older adults. The prevalence
in the United States is expected to quadruple over the
next 50 years such that 1 out of 45 Americans will be
afflicted with the disease.23 Pain is also a leading contributor to disability in older adults and occurs in up to 80%
of nursing home residents and 50% of community-dwelling elderly.15 Older adults often suffer from multiple
coexisting illnesses such as musculoskeletal disorders and
peripheral neuropathies that predispose to acute and
chronic pain (Table 1).13 The patient in this case has several conditions which increase the risk of developing
pain, including physical (spinal stenosis, arthritis), cognitive (dementia, depression), and sensory impairments
(blindness). Moreover, she requires assistance with sev373
374
Table 1.
Pain and Dementia
Common Sources of Pain in Older
Adults
 Degenerative joint disease
 Spinal stenosis
 Fractures
 Pressure ulcers
 Radiculopathy
 Urinary retention
 Constipation
 Vitamin D deficiency
 Polymyalgia rheumatica
 Coronary artery disease
 Post-stroke syndrome
 Improper positioning
 Fibromyalgia
 Cancer
 Contractures
 Postherpetic neuralgia
 Oral/dental
 Peripheral vascular disease
 Paget’s disease
eral Activities of Daily Living, such as ambulation, which
puts her at risk for falls and other injuries.
Despite the high prevalence of pain in this population,
studies have shown that older patients receive inadequate pain control compared with younger individuals.4,30,36 Cognitively impaired patients may be at greatest risk of poor pain control due to underrecognition and
undertreatment of pain. Alzheimer’s disease leads to
pathological changes in the brain that afflict neurologic
pathways associated with the affective component of
pain. It is thought that persons with dementia may perceive a painful stimulus normally; however, the ability to
remember, interpret, and respond to pain is altered.3
Instead, patients may manifest discomfort through challenging behaviors such as agitation, physical combativeness, verbal aggression, disruptive behavior, wandering,
or social withdrawal. These changes can impede care,
create distress in caregivers, and lead to physical restraints and psychotropic therapy.10 Identification of
pain in these patients can be challenging as up to 90% of
cognitively impaired individuals will develop behavioral
and psychological symptoms from progression of the primary disease itself.6 Caregivers and clinicians may assume that worsening behaviors are due to the underlying disease process, rather than from a new source of
discomfort.
The consequences of unrelieved pain can profoundly
impact the quality of life of elderly patients (Table 2).
Persistent pain leads to functional disturbances such as
impaired ambulation, gait abnormalities, and decrease
in recreational activities.34 Moreover, higher pain scores
are correlated with increasing levels of physical disability
and number of impairments in Activities of Daily Living.39 Undertreated pain can also lead to impaired psychosocial function in older adults. Persons with chronic
nonmalignant pain perform lower on neuropsychological tests and have poorer mental flexibility than those
without pain.22,38 Undertreated pain also results in significant mood disturbances such as depression, anxiety,
and self-reported loss of enjoyment in life.18,26,34 In addition, increased pain intensity is independently associated with appetite impairment in community-dwelling
older adults.5 Last, older adults with a history of chronic
bodily pain are more likely to report significant sleep
disturbances.16
Physical and psychological impairments due to untreated pain can lead to learned helplessness, social isolation, and rising healthcare costs as dependency in activities of daily living require more help from caregivers
and medical staff. Undertreated pain has also been associated with a decreased self-rated overall health assessment which has shown to be an independent predictor
of death.32 The patient in this case exhibited many factors associated with untreated pain in persons with dementia including poor appetite, weight loss, difficulty
sleeping, and social isolation. Once the painful condition
was treated, her symptoms abated and she returned to
her baseline.
The importance of performing thorough evaluations
in cognitively impaired individuals with behavior
changes cannot be underestimated. A patient demonstrating new or worsening agitation or social withdrawal
may be responding to an unmet need such as hunger,
loneliness, or fear. Behavioral changes may also be due
to easily treatable physical discomforts such as constipation, urinary retention, improper positioning, or the exacerbation of an underlying painful condition.25 Because
this patient has a history of depression and challenging
behaviors, it was initially thought that an adjustment in
the antipsychotic was indicated. However, treating challenging behaviors without searching for other etiologies
first may lead to unnecessary use of restraints or psychotropics without correcting the root cause. The aggressive
treatment of pain in this case demonstrates that a proactive approach to screening for, detecting and treating
pain can positively impact the quality of life of older
adults by effectively controlling symptoms with appropriate interventions.
Lisa Vargish, MD
Stacie K. Levine, MD
Section of Geriatric Medicine
Department of Medicine
University of Chicago
Chicago, IL
Challenges in Pain Assessment: How Do
We Know When the Patient Cannot
Tell Us?
Dementia patients experience pain but are often unable to interpret or communicate the sensation in a way
that is recognizable. Typical presentations of pain such as
Table 2. Consequences of Unrelieved Pain in
Persons With Dementia
PHYSICAL
PSYCHOSOCIAL
 Gait impairment
 Decreased appetite
 Sleep disturbances
 Agitation
 Physical combativeness
 Wandering
 Decrease in daily activities
 Impaired cognition
 Verbal aggression
 Depression
 Social isolation
 Learned helplessness
CASE REVIEWS IN PAIN/Shega et al
guarding, bracing or moaning may be replaced by expressions of fear, combativeness, agitation, and withdrawal.11 The complexities involved in the identification
of pain contribute to underdiagnosis and undertreatment of pain in the cognitively impaired older patient
population as has been highlighted in recent literature.37,39
A comprehensive pain assessment serves several purposes: to identify the physiological etiology and comorbidities that contribute and shape the experience of
pain, to determine the severity of pain and its impact on
function and quality of life, to develop an intervention
plan tailored to the individual’s strengths and limitations, and to monitor and evaluate response to treatment. Clinical practice recommendations for pain assessment in patients with advanced dementia triangulate
the search for physiological etiologies of pain with selfreport, behavioral observation, proxy report, and response to analgesic trials.20
This 82-year-old patient has chronic pain due to osteoarthritis with spinal stenosis limiting her overall mobility.
Her pain experience is further worsened by depression,
Alzheimer’s disease, and blindness. Ideally, her primary
caregivers or family members are familiar with her typical pain behaviors most likely elicited during movementbased activities such as dressing or transfers. The recent
ankle injury has added severe acute pain and resultant
anxiety to her controlled persistent pain. Despite cognitive impairment this patient is able to localize and rate
her pain, assisting in the differentiation of acute and
chronic pain and its severity.
Many mild to moderately cognitively impaired older
patients are able to report pain in the here and now.9,21
Standardized pain scales are available to track pain intensity from diagnosis through treatment response with
good reliability and validity. They are easily administered
in the clinical setting but should be matched to the patient’s cognitive and sensory limitations.19 This blind
patient may be able to use a numeric descriptor scale
although the verbal version requires additional abstract
thought and is often challenging for persons with cognitive impairment. While a braille formatted pain intensity
scale may be an option, the use of a simple verbal descriptor scale that includes none, mild, moderate, and
severe pain is a reasonable alternative.
As cognitive impairment progresses to Mini-Mental
Status Exam Scores ⬍13 and patients become unable to
respond even to prompting, clinicians and caregivers
have to rely on observation of pain behaviors. State-ofthe-science reviews of currently available behavioral assessment tools provide guidance in selection of a tool
that is clinically usable and psychometrically sound.20,40
Assessment of pain behaviors in persons with dementia
can be comprehensive taking note of changes in baseline
behaviors or focused directly on behaviors as they are
apparent during the examination. The American Geriatrics Society31 organized pain behaviors into six main categories including facial expressions (eg, fear with frowning, grimacing, closed or tightened eyes, or rapid
blinking); vocalizations (eg, chanting, noisy breathing,
375
calling out or asking for help); body movements (eg,
rigid and tense, fidgeting, pacing or rocking); interpersonal interactions (eg, change in aggressive, disruptive
or resistive behaviors or social withdrawal); changes in
activity patterns (eg, eating and sleeping and physical
movement routines); and metal status changes (eg, tearfulness and worsening confusion and irritability). Our
patient demonstrated a worsening of agitation, aggression and social withdrawal, as well as weight loss. These
are all triggers for a comprehensive pain assessment.
Corroboration with knowledgeable informants to
complete items on multidimensional instruments that assess pain behaviors, mood, quality of life, coping resources, and social support is an important effort to validate presence of pain when obvious etiologies are not
present. Caregivers with longstanding patient-relationships are in the best position to identify subtle changes in
behavior but all must be educated in recognizing atypical behavioral presentations as potential pain indicators.12
If potential pain behaviors persist after basic needs are
ascertained, pathologic processes are addressed and
nonpharmacologic interventions attempted, an analgesic trial is indicated.25 Here, this was done successfully
only after the patient’s antipsychotic medication dose
was increased. When suspecting pain as the cause of a
behavior change, it is advantageous to perform an analgesic trial first because it yields a quicker response in
normalizing behavior, any adverse reaction to analgesics
are generally less serious, and pain is actually relieved
rather than masked by the sedative effects of the antipsychotic medication.20
The Interdisciplinary Expert Consensus Statement on
Assessment of Pain in Older Patients19 offers a comprehensive review of recommendations, tools, and procedures available to clinicians caring for both cognitively
intact and impaired older patients. Adequate assessment
is essential for clinical decision-making, implementation
and ongoing evaluation of care. As more assessment
tools become available and clinicians grow more skilled
in detecting pain in the cognitively impaired there is
hope that this fastest-growing segment of our older
population will receive the pain relief it deserves but may
not be able to ask for.
Heide Bursch, RN, MSN
Keela Herr, PhD, RN, FAAN, AGSF
College of Nursing
University of Iowa
Iowa City, IA
Weighing Treatment Options in Older
Adults With Pain and Dementia
Pain is one of the most common medical symptoms of
late life, and cognitive dysfunction is the most prevalent
psychiatric disturbance. Managing comorbid pain and
dementia may be challenging because of the potential
overlap in their expression. Agitation, confusion, depressed mood, anorexia, apathy, and impaired sleep may
376
Pain and Dementia
Table 3.
Potential Benefits and Risks of Opioids in Older Adults With Dementia
PARAMETER
POTENTIAL BENEFIT
Pain
Polypharmacy
Reduced severity
Reduced psychotropic polypharmacy
Caregiver burden
Mobility
Cognitive function
Psychological function
Sleep
Reduced
Improved
Not known – perhaps reduced risk of delirium
May improve with reduction in pain
Improved sleep may result if pain was
interfering with sleep.
Improved appetite may result if pain was
interfering with appetite.
Appetite
manifest in patients experiencing pain as well as those
with dementia.2,27 Practitioners, therefore, must evaluate new symptoms or exacerbation of existing ones as
potential manifestations of either or both disorders.
In addition to the potential for overlap in expression of
pain and dementia, some of the medications used to
treat pain, particularly opioid analgesics, may cause
overlapping symptoms such as depression, delirium, and
worsening of appetite and sleep.17,24,29,35 Before deciding to initiate these medications, therefore, their associated risks and benefits must be weighed carefully. Our
patient was still in pain despite treatment with both ibuprofen and acetaminophen. She also appeared to be depressed despite treatment with sertraline, was becoming
socially isolated, losing weight, and was not sleeping—
symptoms associated with poor quality of life and increased mortality rates.14 She was also agitated, resulting in increased use of quetiapine. Of note, while the use
of such atypical antipsychotics are valuable for the management of agitated older adults with dementia, they
are not without risk and have been associated with increased rates of adverse effects when used for the treatment of psychosis, aggression, or agitation in patients
with Alzheimer’s disease.33
In Table 3, we have outlined the parameters that
should be considered when weighing the potential risks
and benefits of prescribing opioids for older adults with
dementia. Although pain and its attendant comorbidities may be reduced, opioids are associated with numerous potential side effects such as an increased risk of falls
(less pertinent in our wheelchair-bound patient), sedation, delirium, depression, agitation, impaired sleep, and
diminished appetite secondary to nausea and/or constipation. Clearly careful monitoring of the older adult in
whom opioids are initiated is key; it is crucial that the
practitioner assesses frequently for an appropriate stop
date and terminates therapy with the opioid when it is
no longer needed. For the opioid-naïve patient, it is also
important to initiate treatment with a low-dose short
acting agent (eg, liquid morphine, as in this case). Regarding the risk of increasing caregiver burden because
of caregiver concerns about addiction, prevention is the
POTENTIAL RISK
No change in severity but exposure to potential risks.
Perhaps no change in total number of drugs given; likely need
addition of laxative.
Increased if concern about dependence/addiction.
Heightened risk of falls.
May cause cognitive slowing as well as sedation; delirium is possible.
May cause depression and/or agitation.
Impaired sleep architecture.
Nausea and/or constipation may cause impaired appetite.
key. That is, the health care provider should educate the
patient and their caregiver about the meaning of addiction (ie, as compared with dependence) and the very
unlikely nature of its occurrence.28
Another important consideration in the patient with
comorbid pain and dementia is the concomitant risk of
depression. Our patient has prominent neurovegetative
symptoms including weight loss, poor appetite and difficulty sleeping as well as agitation, aggression, and reclusiveness. While sleep, appetite, and mood are all affected by pain, these symptoms are all also consistent
with a diagnosis of depression. Given her history of depression (which appears to be undertreated at sertraline
100 mg/d), undertreated pain, dementia, and blindness,
she is at risk of developing a major depressive episode.8
Depression and pain are mutually exacerbating conditions. Although this patient lives in the community, for
many older adults with dementia, especially those living
in nursing homes, depression is underdetected and untreated.1,7 To optimize the treatment of painful conditions in older adults with cognitive impairment, aggressive treatment of psychiatric comorbidity such as
depression, anxiety, and sleep impairment will improve
analgesia and minimize polypharmacy.
Optimal management of the older adult with comorbid pain and dementia requires both attention to detail
as well as a balanced perspective of the big picture. A
formulaic approach does not exist. There are no substitutes for careful comprehensive assessment, frequent reassessment, and ongoing communication with the patient and caregiver.
Jordan F. Karp, MD
Department of Psychiatry
Western Psychiatric Institute and Clinic
Pittsburgh, PA
Debra K. Weiner, MD
Department of Medicine, Department of Psychiatry
and Department of Anesthesiology
University of Pittsburgh School of Medicine
Pittsburgh, PA
CASE REVIEWS IN PAIN/Shega et al
377
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