Causes and Signs of Untreated Pain in Dementia

Experts estimate that about 50% of people with dementia have pain on a regular basis and that pain likely increases as their dementia progresses to the later stages.

While dementia itself does not typically cause physical pain, there are often other conditions in people with dementia that do cause pain. The majority of dementia cases are in older adults, and this age group carries a high risk of osteoarthritis, urinary tract infections, falls, and pressure sores, all of which can cause significant pain. According to one physician, (Dr. John Mulder), everyone over the age of 25 has some degree of arthritis in joints, which has the potential to cause muscle and skeletal pain.

Some research seems to suggest that people with dementia may experience pain differently than those whose cognition is intact, while others feel that it is simply a reduced capability to express that pain. Studies have generally agreed that people with dementia have a high risk of being under-treated for pain.

In the general population, the accepted standard for rating pain is to simply ask the person about their pain. This is more complicated in the person with dementia due to the gradual impairment of cognition and word-finding ability. However, research does suggest that in the early and even in the middle stages, many persons are still able to accurately identify and express their pain; thus, they should be asked. In the later stages of dementia, it becomes more difficult for the person to express their pain.

Asking a person with some confusion to rate their pain on a scale of 1 through 10 is not a good practice, as a rule, because there are too many choices and too many different interpretations of what each number might mean.

A more appropriate assessment tool in 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 his breathing labored or calm?
• Is she calling out or crying?
• Is she showing tense facial expressions or grimacing?
• How's the body language? This includes pacing, tight fists, striking out and pulling away
• Is he consolable? Can you calm and distract him?

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 her normal behavior?
• What does she look like when she's in pain?
• How does her behavior change when she's not comfortable?
• What have you found to be helpful for her when she's in pain?
• What old injuries still bother her?

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

When caring for someone with dementia, one challenge is to determine if pain or another need such as loneliness, boredom, hunger, or a need to use the bathroom is causing the person’s distress.

A second concern is that if professional caregivers aren't vigilant in assessing and treating pain, the person may be labeled as anxious or depressed and be prescribed a psychotropic drug instead of addressing the pain that's causing those feelings.

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

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 she's 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 she doesn't receive it, or she gets it later than would have been ideal and her 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.