Pain and Dementia

Is pain a common problem in people with dementia? In short, yes. However, pain in dementia patients is often unrecognized and under-treated.

Since pain is a subjective experience clinically defined as “what the patient says it is,” it may be difficult to assess in the cognitively impaired patient, but it is not impossible.

The signs interpreted years ago as psychotic-related agitation have been proven to frequently be indicators of pain.

Signs of pain in persons with dementia may include:

  • Behavioral changes including fidgeting, pacing, repetitive motions, and refusal to eat or cooperate in general. Shouting, crying and groaning may also be observed.
  • Mood changes including aggressive behavior, depression, isolation, and withdrawal.
  • Body language such as frowning, grimacing, teeth clenching, and guarding, rubbing, or stiffening parts of the body.

As nerve pathways in the brain deteriorate, normal control of painful stimuli appears to be lost in dementia, and thus more pain may be felt. As advanced dementia patients approach the end of life, studies have proven they experience distressing symptoms, including pain, similar to those with other terminal illnesses such as cancer. Immobility and debilitation are no friends of the aging body.

By viewing agitation with tunnel vision as strictly a behavioral issue requiring sedatives, patients are left to suffer in silence.

Families may want to consider the following:

1) Review the health history with care providers and discuss  prior or current conditions likely to cause pain such as urinary tract infections, impactions, headaches, arthritis, or  even new problems not yet diagnosed;

2) Tenderly and directly communicate with the dementia patient no matter what his/her condition is. Frequently assess all verbal and non-verbal pain signals, responses to pain medications, and side effects, and report these to your health care provider. Never assume that someone else has seen and documented these observations.

3) Discuss the need for scheduled pain medications. PRN (as needed) treatment seldom provides continuous relief  in patients who cannot express themselves verbally. By the time signs of pain are recognized, he/she has likely been hurting for some time and will continue to hurt until pain medications begin to work. Pain prevention is the key.

4) Pay attention to behavioral patterns that relate to pain. Documenting the dementia patient’s daily care can aid in identifying triggers for pain and points for intervention.

5) If you feel your healthcare provider is unwilling to prescribe adequate pain control, consider requesting a pain consult, changing providers, and/or contacting hospice to determine if your loved one qualifies for services. Hospice nurses know comfort and pain relief well.

These most fragile of our loved ones are still complete living, breathing, feeling, and thinking individuals. They deserve to be treated with the greatest of respect and concern for their comfort when they can no longer care for themselves.

Today’s guest writer is Candy, MEd, RN. Candy is a Registered Nurse who lost her mother to dementia complications after a seven year battle. After witnessing a lack of dementia care training among caregivers and providers, she now encourages families to take an active role in watching for and reporting signs of pain.

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