Most of the time when someone is in pain, everyone around them knows. Chances are, they are vocalizing their discomfort, perhaps telling where the pain is, or what caused it. We often rely on people to tell us if they are hurting, so we can react and address the problem. Unfortunately, it is often challenging for people living with later stages of dementia to accurately tell their caregiver if they are in pain. A person living with later stages of a progressive dementia, like Alzheimer’s disease, might not be able to talk, or be able to identify what is causing their discomfort. For caregivers, both family and professionals, it is important to almost be like a detective when identifying nonverbal signs of pain. The Pain Assessment in Advanced Dementia Scale (PAIN-AD) is a reliable tool to help assess pain in people living with advanced dementia. Although created primarily to address nonverbal signs of pain, this scale can also be used for people who are still able to communicate verbally. PAIN-AD measures five different symptoms to determine pain. They include breathing (assessment for labored or noisy breathing), negative vocalization (assessment for moans, repeated calling out), facial expression (assessment of frowning or grimacing), body language (assessment of tense fidgeting, rigidity), and consolability (assessment of ability to be distracted, reassured). Through assessment and scoring of these five symptoms, caregivers can determine if mild, moderate, or severe pain is present. PAIN-AD helps give caregivers an understanding of nonverbal signs of pain, and a tool to know if symptoms are present and when to address them.

  • Breathing independent of vocalization: 0 - Normal; 1- Occasional labored breathing or Short period of hyperventilation; 3 - Noisy labored breathing. Long period of hyperventilation. Cheyne-stokes respirations
  • Negative vocalization: 0 - None; 1 - Occasional moan or groan. Low-level of speech with a negative or disapproving quality; 2 - Repeated troubled calling out. Loud moaning or groaning. Crying.
  • Facial expression: 0 - Smiling or inexpressive; 1- Sad, frightened, frown; 2 - Facial grimacing.
  • Body language: 0 - Relaxed Tense; 1 - Distressed pacing. Fidgeting; 2 - Rigid. Fists clenched. Knees pulled up. Pulling or pushing away. Striking out
  • Consolability: 0 - No need to console; 1 - Distracted or reassured by voice or touch; 2 - Unable to console, distract or reassure.

For more information about Memory Moment & Effingham Area Alzheimer’s Awareness, check out their website at www.effinghamalz.org. If you are a caregiver and have specific questions or situations you would like information on, call Shannon Nosbisch at 217-663-0010 or Amy Sobrino at 618-363-8372.

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