How to Recognize and Manage Pain in Dementia

Pain is one of the most common, and least understood, experiences for people living with dementia. Between 50 to 80 percent of people with dementia experience pain every day, yet many people suffer from it unnoticed and untreated. 

As dementia progresses people lose their ability to communicate as clearly as they did prior to diagnosis, caregivers can learn how to read pain in other ways. Learning to read their face, voice, and changes in behavior can give clear clues as to when they are struggling.  The good news is that pain in dementia is recognizable and, in most cases, manageable.

Why is pain so hard to recognize in dementia?

As dementia progresses, it can become harder for a person to identify, describe, or communicate that they are in pain. Changes in language and cognition may make it difficult to explain where something hurts or how severe the pain is. Nonverbal cues also become more important, particularly for people in the later stages of the disease. Cognitive decline can affect both communication and facial expressions, making pain harder to recognize.

That means pain may show up as a change in behavior rather than a clear complaint. A person in pain may become unusually restless, agitated, withdrawn, or resistant to care. Research has linked pain in dementia with behavioral symptoms including agitation and wandering. Dementia-care experts caution that these changes can sometimes be mistaken for symptoms of the disease itself.

“Behavior that can seem ‘aggressive’ is usually the result of someone with dementia trying to communicate their distress in what can be verbally or physically challenging ways for the caregiver,” Pat Brown, a former Admiral Nurse at Dementia UK, previously told Being Patient. “It’s important to remember that the person is trying to express what they want or need with their behavior, so we need to explore what may have triggered the distressed behavior.”

For caregivers, a sudden or unexplained change in behavior can therefore be an important clue. Behavior that appears aggressive or distressed may be a person’s way of communicating a need they can no longer easily put into words.

What are the signs a person with dementia is in pain?

When a person with dementia has difficulty describing pain, caregivers may need to look for changes in their behavior, expressions, and movements. Some common cues include:

• Facial expressions: Grimacing, frowning, or looking tense or distressed.
• Vocalizations: Moaning, groaning, calling out, or making other unusual sounds.
• Changes in behavior: New or increased agitation, aggression, restlessness, or distress.
• Body language: Fidgeting, pacing, guarding or rubbing part of the body, tensing up or becoming reluctant to move.
• Changes in sleep: Sleeping more or less than usual, waking frequently at night, or experiencing a noticeable shift in sleep patterns.

No single behavior proves that someone is in pain. What matters most is noticing new or unusual changes from that person’s typical behavior and considering whether pain or another physical problem could be contributing.

What happens if pain goes untreated in someone with dementia?

When pain goes unrecognized or untreated, it can add to distress and disrupt sleep, movement, and daily activities. In people with dementia who have difficulty explaining what hurts, pain may instead show up through changes in behavior, including agitation, aggression, restlessness, or resistance to care.

Tthe underlying cause may be easy to miss. A person who suddenly resists bathing, becomes distressed while getting dressed or lashes out during personal care may not simply be experiencing a behavioral symptom of dementia. Pain or another physical problem could be contributing.

“Behavior that challenges the caregiver and others… can often happen because the dementia is preventing them from being able to explain that they’re frightened, in pain, disorientated, unwell, not feeling ‘right,’ sad or distressed,” Brown told Being Patient. 

For caregivers, a sudden or unusual change in behavior is a reason to consider what may be causing discomfort, including asking: Could this person be in pain?

What types of pain do people with dementia experience?

Pain in dementia can stem from the disease itself, from a medication side effect, or from a coexisting condition that has nothing to do with the brain. Common sources include:

• Musculoskeletal pain: Arthritis, osteoporosis, or muscle strain can cause musculoskeletal pain, leading to discomfort in joints, muscles, or bones.
• Headaches: Individuals with dementia may experience headaches due to various factors such as tension, medication side effects, or underlying conditions like vascular disease.
• Dental pain: Tooth decay, gum disease, or ill-fitting dentures can cause dental pain, which may make it challenging for people with dementia to communicate. 
• Neuropathic pain (nerve-related): Nerve damage or neuropathy, which can occur due to conditions like diabetes or vascular dementia, may result in shooting or burning pain sensations. 
• Abdominal pain: Digestive issues, constipation, or gastrointestinal conditions can lead to abdominal discomfort or pain. 
• Skin pain: Skin conditions like pressure sores, dermatitis, or injuries can cause discomfort or pain.
• Sensory sensitivity: Hypersensitivity to stimuli such as touch, temperature, or sound may cause discomfort or pain in individuals with dementia.
• Psychological or emotional pain: Depression, anxiety, or feelings of isolation can manifest as emotional distress or psychological pain.

Hypersensitivity in dementia

Hypersensitivity in dementia often appears as excessive itching and scratching. Dementia care expert Teepa Snow explains, “The itch is a hypersensitivity on your skin. Your skin is a sensory organ, and it has lots of sensors all over it.”

In certain dementias, such as Lewy body dementia, the brain sensory system becomes overactive, so normal sensations like hair movement, skin dryness, or friction may be misinterpreted as an itch. Scratching can lead to cycles of skin picking and scabbing.

If this sounds familiar, a few caregiver strategies can help:

• Rule out medical causes first. Drug reactions, bacterial or yeast infections, and skin dryness can all cause itching and should be checked by a clinician.
• Support the skin. Staying hydrated and keeping a consistent skin-care routine can reduce sensitivity.
• Engage the hands and mind. Snow emphasizes giving a person hands-on activities that gently pull attention away from the sensation.

Persistent scratching in dementia is often a sensory misfire, not a skin problem alone. Rule out medical causes, keep skin moisturized, and redirect restless hands.

How do you assess pain when someone can’t rate it?

People in the earlier stages of dementia can often describe and rate their pain. As dementia advances, communicating pain may become more difficult or unreliable, and caregivers and clinicians may need to rely more heavily on structured observation.

The Pain Assessment in Advanced Dementia (PAINAD) scale is one widely used observational tool. It scores five behaviors — breathing, negative vocalization, facial expression, body language, and consolability — from 0 to 2, for a total score between 0 and 10.

What medications treat pain in dementia?

Several medication classes are used for dementia-related pain, each with its own benefits and risks. Acetaminophen (paracetamol) is often the first-line choice and considered to be safe for older adults. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, are used to manage mild to moderate pain and inflammation, similar to the use case of acetaminophen.

Many people living with dementia suffer from psychiatric symptoms as a result of their dementia. Antidepressants can be used to treat depressive symptoms, and some forms are occasionally used to manage nerve-related pain or chronic pain conditions. 

Anticonvulsant medications, such as gabapentin or pregabalin, can be prescribed for neuropathic pain. In cases of severe pain, opioids may be prescribed but are typically used as a last-resort when other pain management treatments fail.

When discussing pain management medications with a doctor, be sure to indicate all other medications your loved one is taking. Every one of these carries side effects and interaction risks, so the right choice depends on the individual. A doctor will weigh the person’s overall health, their medical history, their tolerance for a given medication, the risk of adverse effects, and potential interactions with drugs they already take when assessing a new medication.

Medication mismatches are common: Research has found that a large share of older adults with dementia fill prescriptions that aren’t FDA-approved for their condition, which can complicate care. That makes an honest medication review with your doctor or pharmacist worthwhile.

Are opioids safe for people with dementia?

Opioids can relieve severe pain, but they carry heightened risks for people with dementia. Research presented at the 2023 Alzheimer’s Association International Conference by neurologist Christina Jensen-Dahm, M.D., Ph.D., of the Danish Dementia Research Centre at Copenhagen University Hospital found a strong association between starting opioids and mortality.

Researchers analyzed records from more than 75,000 Danish adults, 65 and older, with dementia. In the preliminary analysis, starting an opioid was associated with roughly an 11-fold higher risk of death during the first two weeks of use. Strong opioids such as morphine, oxycodone and fentanyl were associated with more than a six-fold higher mortality risk over the six-month study period.

The findings don’t mean opioids should never be used. “Opioids should generally be used for the shortest possible time as they carry significant risk.” Jensen-Dahm told Being Patient. 

At the same time, she emphasized that some people with dementia are in severe pain and “clearly benefit from opioid therapy,” and that stopping treatment in those cases could worsen quality of life.

That makes the decision highly individual. Opioids can cause side effects including “sedation, confusion, respiratory depression, and falls,” Jensen-Dahm said, so caregivers should discuss the risks and benefits with the prescribing doctor and watch closely for changes after treatment begins.

Alzheimer’s Association neurologist Nicole Purcell echoed that point: “Pain should not go undiagnosed or untreated,” particularly when a person with dementia may struggle to communicate where or how badly they hurt. If opioids are used, she said, “there needs to be careful monitoring of the patient.”

What non-drug approaches help with dementia pain?

Medication isn’t the only tool for managing pain. Non-pharmacological approaches can sometimes be used on their own or alongside medication, depending on the cause and severity of the pain. Research has explored several approaches for people living with dementia, including:

• Physical therapy and exercise to address certain types of musculoskeletal pain and help maintain mobility
• Gentle massage, which may help reduce pain and provide comfort
• Cognitive-behavioral therapy (CBT) for people whose stage of dementia allows them to participate
• Music therapy, which may help reduce pain or distress and provide a calming distraction

These approaches generally avoid many of the medication-related risks that can be especially important for older adults with dementia, although what works will depend on the individual and the source of their pain.

Recognizing pain can make a difference

Pain in dementia is common, but suffering in silence doesn’t have to be. When caregivers learn to read facial expressions, vocalizations, and changes in behavior — and pair that attention with the right assessment tools and a collaborative care team — pain can often be recognized and better managed.

That is at the heart of good dementia care: noticing what a person may no longer be able to tell you, and responding with attention, steadiness, and warmth.