How to Deal with Untreated Pain in People with Dementia

Imagine feeling a sharp, constant pain but having no words to describe it, no memory of when it started, and no way to ask for help. This is the silent and often invisible reality for many seniors living with dementia.

As cognitive abilities decline, the ability to recognize, communicate, and remember pain diminishes, leaving suffering to manifest in unexpected ways: Through agitation, withdrawal, or aggression. For caregivers, deciphering these behavioral cues becomes a critical yet heartbreaking puzzle. Untreated pain not only diminishes quality of life but can also accelerate cognitive decline.

This guide illuminates the hidden signs, explores the common underlying causes, and provides compassionate strategies to identify and alleviate pain, helping you restore comfort and dignity to your loved one’s daily life.

Pain in Dementia Isn’t Always Obvious or Easy to Diagnose

Seniors with dementia often experience pain or severe discomfort regularly.

Typically, their pain is caused by health conditions common among older adults, such as arthritis, constipation, recovery from surgery or other medical procedures, injuries from falls or accidents, infections, or pressure ulcers.

However, it’s not always easy to know when someone with dementia is in pain.

That’s because their ability to recognize what’s going on in their body and communicate their needs declines as dementia advances.

Additionally, the nonverbal ways they communicate pain are often not what we’d expect, so it’s easy to miss or misinterpret those signals.

We present three reasons why you might not know whether someone with dementia is in pain, 5 common causes of pain in dementia, 3 ways to determine whether someone is in pain, and 2 ways to treat chronic pain.

3 Reasons Why it’s Challenging to Detect Pain in Seniors with Dementia

1. Inability to describe, explain, recognize, or remember pain

One reason we don’t know when someone with dementia is in pain is that they lose the ability to recognize or describe what’s happening with their body.

Even when explicitly asked, they may not be able to explain how they’re feeling, where the pain is, when it started, or how it feels.

Even though they feel and are affected by it, they may not recognize that what they’re feeling is pain.

Plus, if someone has problems with short-term memory, they may have forgotten about an episode of pain.

However, that doesn’t mean that they weren’t affected by the pain at the time or that they won’t be in pain again.

2. Fear

Another reason someone with dementia may not say when they’re in pain is that they’re afraid.

They might be afraid that they would need surgery or a painful treatment, be sent to the hospital or a nursing home, or be given medication they don’t want.

3. Pride

Even if they can clearly communicate their thoughts and feelings, some people may have been raised to believe that pain should be endured in silence.

Their pride leads them to believe that people should never admit to or report pain.

Others may think that admitting to being in pain and needing help means that they’ll lose respect or independence.

5 Common Causes of Pain in Dementia

Alzheimer’s disease or dementia itself doesn’t typically cause physical pain, but many health conditions commonly affect older adults that do cause significant pain.

1. Chronic health conditions

Painful chronic conditions like arthritis, gout, diabetic neuropathy, and others are common among seniors. These all cause ongoing pain, sometimes severe.

2. Injuries and surgery

Injuries from falls can cause pain – even if there are no visible bruises.

Plus, if you weren’t there at the moment and they didn’t remember to tell you, you may not even know that they’ve recently fallen.

After surgery, older bodies often take longer to recover. So even if we think someone is fully recovered, they may still be healing and in significant pain.

3. Infections and illness

Common infections, such as urinary tract infections (UTIs), can also cause pain and significant discomfort.

Other common illnesses, such as shingles, can be very painful and may take months or years to recover from fully.

4. Other common conditions

Everyday issues can also cause significant pain and discomfort.

Conditions such as constipation, upset stomach, and acid reflux are common in older adults as the digestive system slows with age.

5. Bed sores

If someone has limited mobility, they’re at risk of developing pressure ulcers (also known as bedsores). These can progress quickly and become extremely painful.

3 Ways to Find Out if Someone With Dementia is in Pain

1. Ask them directly

The first step is to ask directly whether they’re in pain. Many people can provide information about their pain.

It’s essential to keep the questions simple and to remember that someone may not understand the meaning of the word “pain.”

You may need to ask questions like “Is it sore here?” or “Does it hurt?” or even point and say “Ouch?”

It’s also important to remember that if someone has poor short-term memory, they might only know if they’re in pain at that moment.

They may not remember if they were in pain five minutes, five hours, or a day ago.

Assessing the severity of pain may be challenging because they may not be able to describe their experience.

If someone isn’t able to describe or express their pain, don’t pressure them. Asking repeatedly might cause them to become agitated, angry, or upset.

2. Know the person well

Being familiar with your older adult’s typical behavior helps you recognize signs that they’re in pain, discomfort, or distress.

For one person, it could be uncharacteristic angry outbursts, for someone else, it might be unusually quiet and withdrawn behavior.

To recognize signs of pain, consider their typical mood and behavior, body posture and movement, and whether they typically return to expected behavior after taking pain medication (a sign that they’re feeling better).

Be sure to consider known medical conditions as possible causes of chronic pain.

For example, arthritis, ulcers, pressure sores, recent surgery, old or new injuries, a history of constipation, chest pain, migraines, or headaches are ongoing conditions that still cause pain even if someone loses the ability to report it.

3. Observe their behavior

Challenging behavior can often be a sign that someone is in pain.

Examples include:

• Making sounds like whimpering or groaning
• Showing facial expressions like frowning, grimacing, or looking frightened or tense
• Guarding certain parts of their body
• Crying or calling out
• Rocking
• Refusing to eat
• Being angry, aggressive, or combative or clenching fists
• Being especially quiet or withdrawing from activities
• Being difficult to please or inconsolable
• Showing increased confusion
• Having higher than normal heart rate or blood pressure, labored breathing
• Sweating, looking flushed (blotchy, reddened skin), or looking very pale
• Pacing or wandering
• Being restless
• Repeating behaviors or words

2 Strategies to Relieve Chronic Pain for Aging Adults

1. Try a variety of non-drug pain relief treatments

Non-drug ways to relieve chronic pain can make a big difference. They can be used alone or in combination with analgesics.

Each person’s body is different, so it may take some experimenting or combinations of treatments to find what works best.

Non-drug pain relief ideas include:

• Gentle exercise or massage to loosen stiff joints and tight muscles
• Heating pads or cold packs – be sure to avoid direct contact to protect fragile older skin
• Changing position – sitting or lying in different positions and using pillows or pads to support the body
• Using gel or air cushions to relieve pressure
• Distracting with pleasant activities like listening to music, spending time with family and friends, pet therapy, reading or listening to audiobooks, arts and crafts, etc.
• Making their environment more calm, soothing, and comfortable
• Using over-the-counter pain relief creams like Ben Gay, Biofreeze, Icy Hot, or others

2. Talk with the doctor about appropriate medications

Controlling pain is essential for quality of life, and in many situations, pain relief medication is needed in addition to non-drug treatments.

If you’ve ruled out other potential causes for challenging or unusual behavior and suspect that your older adult is experiencing pain regularly, it’s a good idea to talk with their doctor about medication to manage their pain.

Before adding pain medication (even an over-the-counter one), it’s essential to speak with the doctor to make sure that it won’t cause problems with any other medications they’re already taking regularly.

For many people, over-the-counter pain medication may be all that’s needed.

When strong prescription pain medication is necessary, many families are concerned about the risk of addiction.

If the doctor thinks the medication is appropriate for the condition, don’t let that worry stop your older adult from getting the pain relief they need. Drug-seeking behavior isn’t common in people with dementia.

Other types of medications to relieve pain include antibiotics to treat infection, laxatives to alleviate constipation, and antacids to help with indigestion.

Some doctors may prescribe or recommend medications on an “as needed” basis instead of a regular daily dose. This only works well with someone who is consistently able to recognize signs of pain and ask for their medication.

With pain in dementia, the person doesn’t have that ability.

So, when you know the pain is chronic (like with arthritis), talk with the doctor to find out if a regular daily dose can be prescribed to make sure your older adult’s pain is consistently under control.

Final Thoughts on Dementia and Untreated Pain

Addressing pain in dementia is one of the most profound acts of caregiving. It requires moving beyond what is said to understand what is felt. By learning to interpret subtle behavioral cues and proactively investigating familiar sources of discomfort, you become your loved one’s essential advocate and voice.

Combining thoughtful observation with a mix of gentle, non-drug therapies and appropriate medical guidance can break the cycle of silent suffering. Remember, managing pain effectively is not just about providing relief; it’s about affirming their humanity, improving their quality of life, and nurturing a more peaceful and connected relationship.

Your attentive care can transform confusion and distress into comfort and calm, making all the difference in their world.

Recommended for you:

• How to Understand and Manage Dementia Behaviors: A Comprehensive Guide
• 14 Ways to Calm Dementia Screaming and Crying
• How to Deal with Caregiver Guilt in Dementia: 6 Tips

 

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