Dementia and Palliative Care: Page 2 of 3

January 16, 2012

The authors report no relevant financial relationships.


Feeding Tubes

The limited value of feeding tubes is a topic worth considering. Several studies have demonstrated the futility of using feeding tubes in patients with advanced dementia.15 Contrary to expectations, providing nutritional support has generally not been found to extend life or prevent complications such as aspiration. Feeding tubes can themselves become a source of complications, with some dementia patients having to be sedated or restrained to prevent them from removing the tube. The highly variable history and circumstances of each clinical situation demand a case-by-case approach to decision-making, which involves value judgments and medical judgments. In general, however, feeding tubes have little place in advanced dementia care.15

Pain Management in Dementia

Pain is common in dementia patients16 and in the general nursing home population, with various studies showing that 45% to 80% of nursing home residents report pain problems.17 Common causes of pain include malignancy, musculoskeletal problems (eg, arthritis, degenerative conditions of the spine), neuropathies, gastrointestinal issues, and headache.16 Of note, several reports indicate that minority patients are less likely to have their pain documented and black patients are less likely to receive analgesia than white patients. A study of cancer pain in minority patients found that many felt they needed more analgesics than their physicians had prescribed.18

Despite the high prevalence of pain in patients with dementia, it is poorly recognized and managed.19 Patients with dementia may lack the verbal skills to communicate their pain, which may be evident only through observation of behavioral changes. Physicians are not always cognizant of pain issues in their dementia patients or sometimes take a nihilistic approach to the problem, thinking nothing can be done or that pain medicine is contraindicated in dementia. Managing pain effectively for these patients involves several principles, including attending to self-reports, searching for causes of pain, observing behavior, and attempting an analgesic trial.

Assessing Pain

Common features of dementia, such as memory impairment, executive dysfunction, aphasia, apraxia, and agnosia, may impair the ability of the patient to express pain and of the physician to assess it.20 Dementia patients may also have difficulty recognizing and communicating internal states and may have impaired memory for pain. It is possible that the neuropathology of dementia interacts in unknown ways with neural pain circuits, and emotional states in dementia may persist even when the patient cannot describe or recall the inciting event.

Assessing pain in a dementia patient who has limited verbal communication is possible through physical examination and the use of simple verbal and nonverbal tools and various scales. Detecting pain requires focusing on behavioral changes, mood symptoms, facial expressions, and body language. Behavioral changes may include restlessness, fidgeting, resistance to care, decreased movement, aggression, and shouting or screaming. Mood symptoms include depression, withdrawal, anger, and diminished appetite. Facial expressions indicative of pain include grimacing, frowning, fear, and tension. Pain clues from body language include rubbing, bracing, guarding, or holding the affected area.20 Using some type of pain scale (eg, Doloplus-2, which is available at is likely to increase recognition of pain and promote its management in patients with dementia.21

Treatment Options

Treatment considerations for relieving pain in patients with dementia include acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants, anticonvulsants, and opioids (Table 1).17,20,21 The choice of pain medication in dementia presents a number of dilemmas requiring an assessment of risk versus benefit.

Acetaminophen is often an appropriate first choice, given its relatively low potential for renal, cardiac, and gastrointestinal toxicity relative to NSAIDs. The potential of hepatic toxicity with acetaminophen use requires attention to dosing, and caution should be taken not to overlook the acetaminophen present in pain relievers that combine the compound with narcotics or other active drugs. NSAIDs may be more effective at ameliorating inflammatory pain, but they present more toxicity concerns, and their use must be closely monitored. Neuropathic type pain may respond to antidepressants or anticonvulsants.17,20,21

Opioids are more potent pain relievers, and their effectiveness and lack of end-organ toxicity compared with that of NSAIDs may make them an appropriate choice for some patients. Sedation, ataxia, falls, psychiatric side effects, constipation, and orthostatic hypotension are important considerations with opioid use. Pain appears to contribute to agitation in many dementia patients, and recent studies have suggested that pain management including opioids can reduce agitation.22 In the context of dementia and reduced life expectancy, dependency is less of a concern. However, many physicians remain uneasy about using opioids, and these drugs are likely underused in this population. A cautious approach to opioid dosing is recommended and requires beginning with low doses and carefully observing the patient for adverse effects. When discussing opioid use with the patient and his or her family, physicians can dispel the myth that properly administered opioids hasten death.

When pain is thought to be persistent, a regular dosing schedule is recommended over an “only as-needed” approach. A lack of consensus among physicians and various members of the nursing staff who encounter the patient over time may hinder as-needed dosing schedules, with different providers responding differently to the same written orders.

Management of Psychiatric Issues

End-of-life psychiatric symptoms or syndromes are common in patients with dementia, and pharmacologic therapies may be indicated to relieve symptoms in those assigned to palliative care.23 For example, low-dose antipsychotics can help alleviate psychotic symptoms or agitation. Antidepressants can be prescribed to treat depressive symptoms or anxiety. Some patients or even their families may also benefit from psychotherapy.

Dosing of psychiatric medications is typically conservative, with clinicians adopting a “start low and go slow” philosophy. How long to use a particular psychiatric agent is dictated by the degree of improvement achieved in the underlying symptoms that the drug is being used to treat and the persistence of symptoms. Sedation is usually not the goal of treatment, but often a consequence of using therapeutic medications to relieve agitation. As is the case with managing pain in patients with dementia, managing agitation requires balancing risks versus benefits. Targeted symptoms evolve over time, and the use of pharmacologic therapies to treat psychiatric symptoms requires periodic assessment (eg, at 3-month intervals) of risks and benefits, with an eye on stopping or weaning patients off medications that are no longer indicated.



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