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Doi:10.1016/j.jpain.2007.03.003

The Journal of Pain, Vol 8, No 5 (May), 2007: pp 373-378
Available online at www.sciencedirect.com Pain in Persons With Dementia: Complex, Common, andChallenging 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 Her vital signs are normal, but she lost 7 pounds since Reviews in Pain” to be presented by The Journal, de- her last visit 1 month ago. The right ankle was swollen signed to share scientific and clinical knowledge in a and painful with range of motion, but no skin break or case review format. This report presents a discussion of erythema were noted. An x-ray of the ankle did not re- pain management in a cognitively impaired older adult. veal a fracture. Ibuprofen was continued and liquid mor-phine 5 mg orally every 6 hours was added along with an Case Study
appropriate bowel regimen. Within a few days, the pa-tient’s pain decreased to a mild intensity, her appetite An 82-year-old woman with moderate Alzhei- improved, she became more social, and the agitation mer’s dementia presents to clinic with worsen- resolved without increased confusion or sedation. This ing agitation, aggression, and social with- allowed the quetiapine dose to be decreased to the pre- drawal for the past 2 weeks. Her family reports that around the same time the patient injured her right anklewhile transferring from the wheelchair to bed. Since that Case provided by Joseph Shega, MD*
time, the patient reports moderate to severe pain con- Linda Emanuel, MD, PhD†
tinuously in the ankle with little relief from around-the- *Division of Hematology-Oncology

clock ibuprofen. Because of the change in her behaviors, Director, Beuhler Center on Aging
the dose of her antipsychotic drug, quetiapine, was in- Northwestern University
Feinberg School of Medicine
On review of systems, the patient complains of a poor Chicago, IL
appetite, difficulty sleeping, and not wanting to leavethe house. Other pertinent history includes spinal steno-sis and knee arthritis (treated with as needed acetamin- Manifestations of Pain in Cognitively
ophen), depression (treated with sertraline 100 mg Impaired Older Adults
daily), and blindness. She ambulates 2 to 3 steps withmoderate assistance, mostly related to spinal stenosis Dementia is one of the leading causes of disability and and knee arthritis. The patient was diagnosed with Alz- diminished quality of life in older adults. The prevalence heimer’s dementia 4 years ago and is dependent in all of in the United States is expected to quadruple over the her instrumental activities of daily living; she is continent next 50 years such that 1 out of 45 Americans will be and can feed herself, but needs assistance with bathing, afflicted with the Pain is also a leading contrib- dressing, and transferring. Cognitively she is oriented to utor to disability in older adults and occurs in up to 80% person, place, and year. She can recall 3 out of 3 words of nursing home residents and 50% of community-dwell- immediately, but 0 out of 3 words at 5 minutes. Her ing Older adults often suffer from multiple coexisting illnesses such as musculoskeletal disorders andperipheral neuropathies that predispose to acute andchronic pain The patient in this case has sev- Address correspondence to Judith A. Paice, PhD, RN, Editor, Case Reviews inPain; Director, Cancer Pain Program, Northwestern University, Feinberg eral conditions which increase the risk of developing School of Medicine, Chicago, IL 60611. E-mail: J-Paice@northwestern.edu pain, including physical (spinal stenosis, arthritis), cogni- tive (dementia, depression), and sensory impairments 2007 by the American Pain Societydoi:10.1016/j.jpain.2007.03.003 (blindness). Moreover, she requires assistance with sev- Physical and psychological impairments due to un- Table 1. Common Sources of Pain in Older
treated pain can lead to learned helplessness, social iso- lation, and rising healthcare costs as dependency in ac- tivities of daily living require more help from caregivers and medical staff. Undertreated pain has also been asso- ciated with a decreased self-rated overall health assess- ment which has shown to be an independent predictor of The patient in this case exhibited many fac- tors associated with untreated pain in persons with de- mentia including poor appetite, weight loss, difficulty sleeping, and social isolation. Once the painful condition was treated, her symptoms abated and she returned toher baseline.
The importance of performing thorough evaluations in cognitively impaired individuals with behavior eral Activities of Daily Living, such as ambulation, which changes cannot be underestimated. A patient demon- puts her at risk for falls and other injuries.
strating new or worsening agitation or social withdrawal Despite the high prevalence of pain in this population, may be responding to an unmet need such as hunger, studies have shown that older patients receive inade- loneliness, or fear. Behavioral changes may also be due quate pain control compared with younger individu- to easily treatable physical discomforts such as constipa- Cognitively impaired patients may be at great- tion, urinary retention, improper positioning, or the ex- est risk of poor pain control due to underrecognition and acerbation of an underlying painful Because undertreatment of pain. Alzheimer’s disease leads to this patient has a history of depression and challenging pathological changes in the brain that afflict neurologic behaviors, it was initially thought that an adjustment in pathways associated with the affective component of the antipsychotic was indicated. However, treating chal- pain. It is thought that persons with dementia may per- lenging behaviors without searching for other etiologies ceive a painful stimulus normally; however, the ability to first may lead to unnecessary use of restraints or psycho- remember, interpret, and respond to pain is tropics without correcting the root cause. The aggressive Instead, patients may manifest discomfort through chal- treatment of pain in this case demonstrates that a pro- lenging behaviors such as agitation, physical combative- active approach to screening for, detecting and treating ness, verbal aggression, disruptive behavior, wandering, pain can positively impact the quality of life of older or social withdrawal. These changes can impede care, adults by effectively controlling symptoms with appro- create distress in caregivers, and lead to physical re- straints and psychotropic Identification of Lisa Vargish, MD
pain in these patients can be challenging as up to 90% of Stacie K. Levine, MD
cognitively impaired individuals will develop behavioral Section of Geriatric Medicine
and psychological symptoms from progression of the pri- Department of Medicine
mary disease Caregivers and clinicians may as- University of Chicago
sume that worsening behaviors are due to the underly- Chicago, IL
ing disease process, rather than from a new source ofdiscomfort.
The consequences of unrelieved pain can profoundly Challenges in Pain Assessment: How Do
impact the quality of life of elderly patients We Know When the Patient Cannot
Persistent pain leads to functional disturbances such as impaired ambulation, gait abnormalities, and decreasein recreational Moreover, higher pain scores Dementia patients experience pain but are often un- are correlated with increasing levels of physical disability able to interpret or communicate the sensation in a way and number of impairments in Activities of Daily Liv- that is recognizable. Typical presentations of pain such as Undertreated pain can also lead to impaired psy-chosocial function in older adults. Persons with chronicnonmalignant pain perform lower on neuropsychologi- Table 2. Consequences of Unrelieved Pain in
cal tests and have poorer mental flexibility than those Persons With Dementia
without Undertreated pain also results in sig- nificant mood disturbances such as depression, anxiety,and self-reported loss of enjoyment in In ad- dition, increased pain intensity is independently associ- ated with appetite impairment in community-dwelling older Last, older adults with a history of chronic bodily pain are more likely to report significant sleep guarding, bracing or moaning may be replaced by ex- calling out or asking for help); body movements (eg, pressions of fear, combativeness, agitation, and with- rigid and tense, fidgeting, pacing or rocking); interper- The complexities involved in the identification sonal interactions (eg, change in aggressive, disruptive of pain contribute to underdiagnosis and undertreat- or resistive behaviors or social withdrawal); changes in ment of pain in the cognitively impaired older patient activity patterns (eg, eating and sleeping and physical population as has been highlighted in recent litera- movement routines); and metal status changes (eg, tear- fulness and worsening confusion and irritability). Our A comprehensive pain assessment serves several pur- patient demonstrated a worsening of agitation, aggres- poses: to identify the physiological etiology and comor- sion and social withdrawal, as well as weight loss. These bidities that contribute and shape the experience of are all triggers for a comprehensive pain assessment.
pain, to determine the severity of pain and its impact on Corroboration with knowledgeable informants to function and quality of life, to develop an intervention complete items on multidimensional instruments that as- plan tailored to the individual’s strengths and limita- sess pain behaviors, mood, quality of life, coping re- tions, and to monitor and evaluate response to treat- sources, and social support is an important effort to val- ment. Clinical practice recommendations for pain assess- idate presence of pain when obvious etiologies are not ment in patients with advanced dementia triangulate present. Caregivers with longstanding patient-relation- the search for physiological etiologies of pain with self- ships are in the best position to identify subtle changes in report, behavioral observation, proxy report, and re- behavior but all must be educated in recognizing atypi- cal behavioral presentations as potential pain indica- This 82-year-old patient has chronic pain due to osteo- arthritis with spinal stenosis limiting her overall mobility.
If potential pain behaviors persist after basic needs are Her pain experience is further worsened by depression, ascertained, pathologic processes are addressed and Alzheimer’s disease, and blindness. Ideally, her primary nonpharmacologic interventions attempted, an analge- caregivers or family members are familiar with her typi- sic trial is Here, this was done successfully cal pain behaviors most likely elicited during movement- only after the patient’s antipsychotic medication dose based activities such as dressing or transfers. The recent was increased. When suspecting pain as the cause of a ankle injury has added severe acute pain and resultant behavior change, it is advantageous to perform an anal- anxiety to her controlled persistent pain. Despite cogni- gesic trial first because it yields a quicker response in tive impairment this patient is able to localize and rate normalizing behavior, any adverse reaction to analgesics her pain, assisting in the differentiation of acute and are generally less serious, and pain is actually relieved rather than masked by the sedative effects of the anti- Many mild to moderately cognitively impaired older patients are able to report pain in the here and The Interdisciplinary Expert Consensus Statement on Standardized pain scales are available to track pain in- Assessment of Pain in Older offers a compre- tensity from diagnosis through treatment response with hensive review of recommendations, tools, and proce- good reliability and validity. They are easily administered dures available to clinicians caring for both cognitively in the clinical setting but should be matched to the pa- intact and impaired older patients. Adequate assessment tient’s cognitive and sensory This blind is essential for clinical decision-making, implementation patient may be able to use a numeric descriptor scale and ongoing evaluation of care. As more assessment although the verbal version requires additional abstract tools become available and clinicians grow more skilled thought and is often challenging for persons with cogni- in detecting pain in the cognitively impaired there is tive impairment. While a braille formatted pain intensity hope that this fastest-growing segment of our older scale may be an option, the use of a simple verbal de- population will receive the pain relief it deserves but may scriptor scale that includes none, mild, moderate, and severe pain is a reasonable alternative.
Heide Bursch, RN, MSN
As cognitive impairment progresses to Mini-Mental Keela Herr, PhD, RN, FAAN, AGSF
Status Exam Scores Ͻ13 and patients become unable to College of Nursing
respond even to prompting, clinicians and caregivers University of Iowa
have to rely on observation of pain behaviors. State-of- Iowa City, IA
the-science reviews of currently available behavioral as-sessment tools provide guidance in selection of a toolthat is clinically usable and psychometrically Weighing Treatment Options in Older
Assessment of pain behaviors in persons with dementia Adults With Pain and Dementia
can be comprehensive taking note of changes in baselinebehaviors or focused directly on behaviors as they are Pain is one of the most common medical symptoms of apparent during the examination. The American Geriat- late life, and cognitive dysfunction is the most prevalent rics organized pain behaviors into six main cat- psychiatric disturbance. Managing comorbid pain and egories including facial expressions (eg, fear with frown- dementia may be challenging because of the potential ing, grimacing, closed or tightened eyes, or rapid overlap in their expression. Agitation, confusion, de- blinking); vocalizations (eg, chanting, noisy breathing, pressed mood, anorexia, apathy, and impaired sleep may Table 3. Potential Benefits and Risks of Opioids in Older Adults With Dementia
No change in severity but exposure to potential risks.
Perhaps no change in total number of drugs given; likely need Increased if concern about dependence/addiction.
Not known – perhaps reduced risk of delirium May cause cognitive slowing as well as sedation; delirium is possible.
May cause depression and/or agitation.
Nausea and/or constipation may cause impaired appetite.
manifest in patients experiencing pain as well as those key. That is, the health care provider should educate the with Practitioners, therefore, must evalu- patient and their caregiver about the meaning of addic- ate new symptoms or exacerbation of existing ones as tion (ie, as compared with dependence) and the very potential manifestations of either or both disorders.
In addition to the potential for overlap in expression of Another important consideration in the patient with pain and dementia, some of the medications used to comorbid pain and dementia is the concomitant risk of treat pain, particularly opioid analgesics, may cause depression. Our patient has prominent neurovegetative overlapping symptoms such as depression, delirium, and symptoms including weight loss, poor appetite and dif- ficulty sleeping as well as agitation, aggression, and re- ing to initiate these medications, therefore, their associ- clusiveness. While sleep, appetite, and mood are all af- ated risks and benefits must be weighed carefully. Our fected by pain, these symptoms are all also consistent patient was still in pain despite treatment with both ibu- with a diagnosis of depression. Given her history of de- profen and acetaminophen. She also appeared to be de- pression (which appears to be undertreated at sertraline pressed despite treatment with sertraline, was becoming 100 mg/d), undertreated pain, dementia, and blindness, socially isolated, losing weight, and was not sleeping— she is at risk of developing a major depressive symptoms associated with poor quality of life and in- Depression and pain are mutually exacerbating condi- creased mortality She was also agitated, result- tions. Although this patient lives in the community, for ing in increased use of quetiapine. Of note, while the useof such atypical antipsychotics are valuable for the man- many older adults with dementia, especially those living agement of agitated older adults with dementia, they in nursing homes, depression is underdetected and un- are not without risk and have been associated with in- To optimize the treatment of painful condi- creased rates of adverse effects when used for the treat- tions in older adults with cognitive impairment, aggres- ment of psychosis, aggression, or agitation in patients sive treatment of psychiatric comorbidity such as depression, anxiety, and sleep impairment will improve analgesia and minimize polypharmacy.
should be considered when weighing the potential risks Optimal management of the older adult with comor- and benefits of prescribing opioids for older adults with bid pain and dementia requires both attention to detail dementia. Although pain and its attendant comorbidi- as well as a balanced perspective of the big picture. A ties may be reduced, opioids are associated with numer- formulaic approach does not exist. There are no substi- ous potential side effects such as an increased risk of falls tutes for careful comprehensive assessment, frequent re- (less pertinent in our wheelchair-bound patient), seda- assessment, and ongoing communication with the pa- tion, delirium, depression, agitation, impaired sleep, and diminished appetite secondary to nausea and/or consti-pation. Clearly careful monitoring of the older adult in Jordan F. Karp, MD
whom opioids are initiated is key; it is crucial that the Department of Psychiatry
practitioner assesses frequently for an appropriate stop Western Psychiatric Institute and Clinic
date and terminates therapy with the opioid when it is Pittsburgh, PA
no longer needed. For the opioid-naïve patient, it is also Debra K. Weiner, MD
important to initiate treatment with a low-dose short Department of Medicine, Department of Psychiatry
acting agent (eg, liquid morphine, as in this case). Re- and Department of Anesthesiology
garding the risk of increasing caregiver burden because University of Pittsburgh School of Medicine
of caregiver concerns about addiction, prevention is the Pittsburgh, PA
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