Causes and Signs of Untreated Pain in Dementia

Experts estimate that at least 50% of people living with dementia experience daily pain, and research suggests that in those who have chronic pain, cognitive decline is likely to progress more quickly.

Pain in head.
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Causes of Pain

There are two ways that dementia can cause or worsen pain:

  • Neurological changes associated with the underlying disease can affect pain centers in the brain.
  • Cognitive decline may make a person unable to communicate their pain.

In the latter case, the pain can stem from a separate health condition that may go un- or undertreated. These conditions most often include osteoarthritis, urinary tract infections, falls, and pressure sores, all of which can cause significant pain.

Some research suggests that people with dementia may experience pain differently than those whose cognition is intact, while other experts argue that increased pain stems primarily from a reduced capability to express that pain. In either case, researchers tend to agree that people with dementia have a high risk of being under-treated for pain.

Ask the Person

In the general population, the accepted standard for rating pain is to simply ask the person about their pain. This is more complicated in people with dementia due to the gradual impairment of cognition and word-finding ability.

However, it has been demonstrated that in the early and even in the middle stages of dementia, many people are still able to accurately identify and express their pain; thus, they should be asked about it. In the later stages of dementia, it becomes more difficult for the person to express their pain.

Use Pain Scales

Asking a person with some confusion to rate their pain on a scale of one through 10 is not a good practice. Confusion may stem from the number of choices and relative interpretations of what each number could correlate to.

A more appropriate assessment tool for pain is the face scale, where the person points to the face that best represents how they feel about their pain. The faces range from very happy to very sad and crying.

Another simple way is to ask how much pain they have: a little, a little more, or a lot.

One other tool that is often used is the Pain Assessment in Advanced Dementia (PAINAD) Scale. This tool was developed by researchers in the Veteran Affairs as a way to more accurately assess pain in people with late-stage dementia. It requires that the following areas are evaluated:

  • Is breathing labored or calm?
  • Is the person calling out or crying?
  • Is the person showing tense facial expressions or grimacing?
  • How's the body language? This includes pacing, tight fists, striking out, and pulling away
  • Is the person consolable? Can you calm and distract them if needed?

Ask a Loved One

Because dementia affects the ability to communicate, it can be very helpful to ask someone who knows the person with dementia about their pain. Consider asking these questions:

  • What is their normal behavior?
  • What do they look like when they're in pain?
  • How does their behavior change when they're not comfortable?
  • What have you found to be helpful for them when they're in pain?
  • What old injuries still bother them?

Other Signs of Pain

A critical component in evaluating pain is the knowledge of the person’s normal behavior and interactions with others. This information is often best provided by family, who can answer questions about typical mood and behavior, body posture, life-long history of pain, and response to pain medications.

Be aware that the following challenging behaviors can all be signs of pain:

  • Cursing
  • Combativeness
  • Apathy and withdrawal from activities and interactions
  • Being high-maintenance (seemingly difficult to please)
  • Wandering
  • Restlessness
  • Repeating behaviors or words

Challenges in Pain Management

The primary challenge in managing pain in patients with dementia stems from the inability of the person to describe what they're feeling. Based on just behaviors and reactions alone, it can difficult to tell the difference between a source of physical pain, such as pain related to a condition, hunger, or needing to use the bathroom, versus an emotional pain, such as loneliness or boredom.

Another challenge for pain management in this population stems from caregiver inability to properly assess or treat the pain, which could lead to a misdiagnosis. A person could be diagnosed as being anxious or depressed and prescribed psychotropic medications—which ultimately cannot help if the suffering is not due to an underlying mental health condition.

Alternative Approaches to Pain

  • Massage
  • Distraction
  • Heat
  • Cold
  • Positioning
  • Pet Therapy
  • Music
  • Acupuncture
  • Aromatherapy
  • Over-the-Counter Creams such as Biofreeze

Medicating for Pain Control

While non-drug approaches are important, many people will still benefit from prescribed pain medications. If you've ruled out other causes of behaviors (such as hunger, boredom, and the need for exercise), and you've determined that the person is likely experiencing pain, getting a prescription for pain medicine is a good idea.

Be wary of pain medications that are ordered on a PRN (as needed) basis. Because the person with dementia might not be able to express their pain well, or might not be aware of a gradual increase in discomfort until they're in a lot of pain, PRN pain medications are more likely to result in poorly controlled pain.

Either the person doesn't ask for it, so they don't receive it, or they get it later than would have been ideal and their pain is beyond what's normally controllable by the medication and dose prescribed. If at all possible, a routine order for pain medicine is preferable for the person with dementia.

Although family members may express the worry of possible addiction to pain medications, this is usually not a primary concern since drug-seeking behavior is not common in people with dementia. Additionally, many value quality of life, which is likely to improve with adequate pain control.

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