Living With Alzheimer’s: Assessing Patients’ Pain

The following is a restructuring of information that may help caregivers living with loved ones with Alzheimer’s recognize the symptoms of pain in an Alzheimer’s patient who is suffering from pain but can no longer describe it, and help them. A link to the online site the information is taken from is provided at the end of this post.


Pain in older adults is very often undertreated, and it may be especially so in older adults with severe dementia.

While Alzheimer’s disease itself does not cause pain, patients may suffer pain from other sources. These sources may include improperly fitting clothes, stomach cramps, constipation, undiscovered sprains or broken bones, arthritis, pressure sores and bruises. Poor hygiene may also lead to pain; for example, sore gums may result from improper oral (teeth/mouth) care.

Changes in a patient’s ability to communicate verbally present special challenges in treating pain, and unrelieved pain can have serious consequences, including declines in physical function and diminished appetite. The Pain Assessment in Advanced Dementia (PAINAD) scale has been designed to assess pain in this population by looking at five specific indicators: breathing, vocalization, facial expression, body language, and consolability. A trained nurse or other health care worker can use the scale in less than five minutes of observation. For an online video showing nurses using the PAINAD scale and other pain-assessment tools, go to

The PAINAD scale is a behavior-observation tool developed for use in patients whose dementia is so advanced that they can’t verbally communicate the fact that they’re in pain. Designed for easy use, it requires a brief training-and-observation period.

* breathing: labored breathing or hyperventilating

* vocalization: moaning or crying

* facial expression: frowning or grimacing

* body language: clenching fists or pushing away caregivers

* consolability: an inability to be comforted

Each item is scored on a scale of 0 to 2. When scores from the five indicators are totaled, the patient’s score can range from 0 (no pain) to 10 (severe pain). The intention was to create a 0-to-10 pain-rating scale for people with advanced dementia that relies on observation and is similar to the commonly used 0-to-10 pain-rating scale that relies on the patient’s own report of pain.


If pain is present: caregivers are advised to evaluate and modify their approach to care. All caregivers are asked to consider the following questions.

* Is the patient handled gently?

* Is s/he given warnings before s/he’s touched or moved?

* Is s/he kept covered and warm while care is given?

* Are you attending to behavioral cues and not rushing through activities?

* Do you stop care activities when s/he resists them?

The creators of the PAINAD scale have given no specific guidance on the treatment of pain according to each score. The soundness of using a 0-to-10 behavioral scale to rate the severity of pain has not been established.5 At the most general level, a score of 1 would indicate mild pain and a score of 10 would indicate severe pain. Mild pain (a total score of 1 or 2) warrants comfort measures (such nonpharmacologic approaches as repositioning or distraction, or a mild analgesic such as acetaminophen); moderate-to-severe pain (a total score of 5 to 10) warrants stronger analgesia, such as an opioid, as well as comfort measures.

CHALLENGES that may arise

It may be difficult to determine whether a particular behavior is related to pain or to something else, such as anxiety or being too cold. Some behaviors may be inconsistent or very subtle; detecting subtle changes may require observing the patient at different times over the course of several days. Often, more pain-related behaviors are seen during movements involved in bathing, getting out of bed, or dressing.

When working with people with advanced dementia, caregivers should remember that it’s impossible to determine whether a person is in pain through behavior alone.9 Thus, the pain indicators in the PAINAD scale (or any other behavioral pain measure) should not be considered definitive. Rather, such a scale should be used within a broader, more comprehensive pain-assessment protocol. This would include trying to obtain the patient’s report of pain, investigating possible causes of pain (such as injury or illness), and possibly starting an analgesic trial.4 It’s also important to talk with family members to ascertain behaviors, or changes in behaviors, that indicated pain when the patient was younger or more cognitively intact.

ONLINE RESOURCES: For more information on the Pain Assessment in Advanced Dementia scale and other geriatric assessment tools and best practices, go to clinical Web site of the Hartford Institute for Geriatric Nursing, New York University College of Nursing, and the Nurses Improving Care for Healthsystem Elders (NICHE) program. The site presents authoritative clinical products, resources, and continuing education opportunities that support individual nurses and practice settings.

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