Unmanaged Pain in Dementia Patients

Dementia is a condition that affects millions of people worldwide, and it can cause a range of symptoms, including pain and discomfort. Unfortunately, pain is often under-detected and undertreated in people with dementia, leading to significant suffering and a reduced quality of life. In this article, we will explore the prevalence of pain among dementia patients, the impact of unmanaged pain on their quality of life, behavioral changes that may indicate pain, and the use of the PAINAD pain scale as a tool for assessing and managing pain in dementia patients.

Prevalence of Pain among Dementia Patients

Understanding the Scope

Unmanaged pain is a significant issue for dementia patients. In the community, more than half of patients with dementia experience daily pain, while in nursing homes, around 60% to 80% of individuals with dementia regularly experience pain. The prevalence of pain in dementia varies, with some studies reporting that 50% of people with dementia regularly experience pain. This high prevalence underscores the importance of addressing pain management in this vulnerable population.

Impact on Quality of Life

Pain can make life very hard for people with dementia. It can make them feel unhappy, angry, or scared. They may act out or say things that hurt their caregivers. Pain can also make it hard for them to do things they enjoy, like eating, sleeping, or moving around. These things are important for their health and happiness. When pain takes away these things, it makes their life worse.

Behavioral Changes Indicating Pain

Recognizing the Signs of Pain

Identifying pain in dementia patients can be challenging due to their limited ability to communicate verbally. Caregivers should watch for behavioral changes that may indicate pain, including:

Facial grimacing or expressions of distress: Sometimes, people with dementia show pain on their faces. They may look sad, angry, or scared. They may frown, squint, or make other faces that show they are hurting. These are signs that they need help with their pain.
Gestures that indicate distress, such as guarding a particular body part or reluctance to move: Other times, people with dementia use their hands or body to show pain. They may hold or touch a part of their body that hurts. They may not want to move or do things that make their pain worse. They may shake their head or wave their arms to say no. These are signs that they need help with their pain.
Moaning, groaning, or crying, especially during movement: Some people with dementia make noises when they have pain. They may moan, groan, or cry out loud. They may do this more when they move or change positions. They may also breathe faster or harder. These are signs that they need help with their pain.
Limited range of motion or slow movement: Pain can make it hard for people with dementia to move. They may not be able to bend, stretch, or reach as far as they used to. They may move slower or more carefully. They may need more help with walking or getting dressed. These are signs that they need help with their pain.
Sleep disturbances, such as excessive daytime sleepiness or difficulty sleeping: Pain can affect how people with dementia sleep. They may have trouble falling asleep or staying asleep. They may wake up often or have bad dreams. They may feel tired or sleepy during the day. They may not want to do things they enjoy. These are signs that they need help with their pain.
Rigidity, striking out, or being resistive: Pain can make people with dementia feel tense or stiff. They may not relax or let go of their muscles. They may clench their teeth or fists. They may hit, kick, or push away people who try to help them. They may not cooperate or follow instructions. These are signs that they need help with their pain.
Calling out, shouting, or exhibiting new behaviors: Pain can make people with dementia act differently. They may say things that don't make sense or are rude. They may yell or scream for no reason. They may do things they never did before, like wander, hide, or take things. They may not recognize people or places. These are signs that they need help with their pain.
Behavioral symptoms like depression, verbal abuse, wandering, agitation, and aggression: Pain can affect how people with dementia feel and behave. They may feel sad, hopeless, or guilty. They may say mean things or curse at others. They may walk around without a purpose or get lost. They may be restless, nervous, or angry. They may be violent or harmful to themselves or others. These are signs that they need help with their pain.

PAINAD Pain Scale for Dementia Patients

The Pain Assessment in Advanced Dementia (PAINAD) scale is a reliable and valid tool for assessing pain in dementia patients, including those with varying degrees of cognitive impairment. The PAINAD scale evaluates pain based on five specific indicators: breathing, vocalization, facial expression, body language, and consolability. A trained healthcare worker can complete the assessment in less than five minutes through observation.

Benefits of Using PAINAD

Incorporating the PAINAD scale into a comprehensive pain management plan can help reduce the risk of undetected and untreated pain in dementia patients. Proper use of this tool enhances pain management strategies, ultimately leading to an improved quality of life for individuals with dementia.

How to use the PAINAD Scale

The PAINAD scale is a tool that helps you measure how much pain a person with dementia has. Dementia is a condition that makes it hard for people to remember, think, and talk. Sometimes, they cannot tell you if they have pain or where it hurts. The PAINAD scale helps you look for signs of pain in their body and behavior. Here is how you use the PAINAD scale:

Step 1: Observe Your Loved One

Before using the PAINAD scale, you must observe your loved one for five minutes. During this time, look for behaviors that might indicate discomfort or pain. These behaviors include:

Facial expressions: Look for frowning, grimacing, or other signs of distress on your loved one's face.
Vocalizations: Listen for moaning, groaning, or other sounds that might indicate discomfort.
Body language: Look for tense muscles, restlessness, or other signs of discomfort in your loved one's body language.
Breathing: Observe your loved one's breathing for signs of distress, such as rapid or shallow breathing.
Consolability: Try to console your loved one by holding their hand or speaking to them soothingly. Observe how they respond.

Step 2: Score Your Loved One’s Behaviors

After observing your loved one for five minutes, you can use the PAINAD scale to score their behaviors. The scale uses a score of 0-2 for each behavior, with a total score ranging from 0-10. Here's how to score each behavior:

Facial expressions: Look for furrowing of the brow, narrowing of the eyes, or deepening of the nasolabial furrow (lines on your face around your nose and mouth)—score 0 for no expression, 1 for mild, and 2 for moderate to severe.
Vocalizations: Listen for moaning, groaning, or other sounds that might indicate discomfort. Score 0 for no vocalization, 1 for occasional moaning or groaning, and 2 for frequent or loud vocalization.
Body language: Look for tense muscles, restlessness, or other signs of discomfort in your loved one's body language. Score 0 for relaxed muscles, 1 for tense or restlessness, and 2 for rigid or constant restlessness.
Breathing: Observe your loved one's breathing for signs of distress, such as rapid or shallow breathing. Score 0 for normal breathing, 1 for occasional labored breathing or short periods of hyperventilation, and 2 for noisy labored breathing, long periods of hyperventilation, or Cheyne-Stokes respirations.
Consolability: Try to console your loved one by holding their hand or speaking to them soothingly. Observe how they respond. Score 0 for easily consoled, 1 for difficult to console, and 2 for unable to console.

Step 3: Interpret Your Loved One’s Score

Once you have scored your loved one's behaviors, you can interpret their score. A score of zero (0) means no pain. A score of 1-3 indicates mild discomfort. A score of 4-7 indicates moderate discomfort. A score of 8-10 indicates severe discomfort. Providers should be notified of severe discomfort.

Hospice PAINAD Score to Rating and Recommendations

PAINAD Score	Pain Severity	Recommendations
0	None	None
1-3	Mild	Nothing to Acetaminophen (Tylenol)
4-7	Moderate	Opioid / Breakthrough Pain Medication
8-10	Severe	Call your provider! Opioid / Breakthrough Pain Medication

Please always consult your hospice provider or doctor in terms of the recommendations or changes to the table that they would apply and follow their instructions!

Examples of the PAINAD Scale

Example 1: PAINAD score of 0

You are visiting your grandmother, who has dementia, at her nursing home. You notice that she is smiling and relaxed. She usually breathes and does not make any noises. She does not seem to have any pain in her face or body. She is happy to see you and responds to your voice and touch. You use the PAINAD scale to score her pain as follows:

Breathing: 0 (normal)
Negative vocalization: 0 (none)
Facial expression: 0 (smiling)
Body language: 0 (relaxed)
Consolability: 0 (no need to console)

The total score is 0, which means she has no pain. You are glad that she is comfortable and enjoy spending time with her.

Example 2: PAINAD score of 3

You are helping your father, who has dementia, with his morning routine. He has arthritis and sometimes has pain in his joints. You notice that he is breathing harder than usual and occasionally moans. He looks sad and frowns when you touch his arms or legs. He is tense and fidgets with his hands. He is distracted by your voice and touch but still seems unhappy. You use the PAINAD scale to score his pain as follows:

Breathing: 1 (occasional labored breathing)
Negative vocalization: 1 (occasional moan or groan)
Facial expression: 1 (sad)
Body language: 1 (tense)
Consolability: 1 (distracted or reassured by voice or touch)

The total score is 3, which means he has mild pain. You decide to give him his pain medication and massage his joints gently. You hope that his pain will improve soon.

Example 3: PAINAD score of 4

You are taking your mother, who has dementia, to the dentist. She has a toothache and needs a filling. You notice that she is breathing rapidly and deeply. She makes a low-level speech with a negative or disapproving quality. She looks frightened and grimaces when the dentist examines her mouth. She is rigid and pulls away from the dentist. She is unable to console, distract, or reassure. You use the PAINAD scale to score her pain as follows:

Breathing: 2 (short period of hyperventilation)
Negative vocalization: 1 (low-level speech with a negative or disapproving quality)
Facial expression: 2 (frightened)
Body language: 2 (rigid)
Consolability: 0 (unable to console, distract or reassure)

The total score is 4, which means she has moderate pain. You ask the dentist to give her some local anesthesia and explain what he is going to do. You hold her hand and talk to her calmly. You hope that the procedure will be over soon and that her pain will go away.

Example 4: PAINAD score of 7

You are watching your husband, who has dementia, at home. He has a urinary tract infection and needs antibiotics. You notice that he is breathing noisily and laboriously. He cries out loud and repeats troubled phrases. He looks angry and facially grimaces. He is rigid and strikes out at you when you try to help him. He is unable to console, distract, or reassure. You use the PAINAD scale to score his pain as follows:

Breathing: 2 (noisy labored breathing)
Negative vocalization: 2 (repeated troubled calling out)
Facial expression: 2 (facial grimacing)
Body language: 2 (striking out)
Consolability: 0 (unable to console, distract or reassure)

The total score is 7, which means he has severe pain. You call his doctor and ask for advice. You give him his pain medication and try to keep him comfortable. You hope the infection will clear up soon and his pain will subside.

Example 5: PAINAD score of 10

You are accompanying your sister, who has dementia, to the hospital. She has fallen and broken her hip. You notice she is breathing in a rhythmic pattern of very deep to shallow respirations with periods of no breathing. She screams and cries loudly. She looks in agony and facially grimaces. She is rigid and clenches her fists and knees. She is unable to console, distract, or reassure. You use the PAINAD scale to score her pain as follows:

Breathing: 2 (Cheyne-Stokes respirations)
Negative vocalization: 2 (crying)
Facial expression: 2 (facial grimacing)
Body language: 2 (rigid)
Consolability: 0 (unable to console, distract or reassure)

The total score is 10, which means she has severe pain. You alert the hospital staff and ask for immediate help. You give her your support and sympathy. You hope that she will get the treatment she needs and that her pain will be relieved.

Conclusion

Unmanaged pain in dementia patients is a significant concern that affects their well-being and quality of life. The prevalence of pain among individuals with dementia is high, emphasizing the need for effective pain management strategies. Pain can have a profound impact on the daily lives of these patients, affecting their mood, behavior, and ability to engage in activities they enjoy. Recognizing the signs of pain in dementia patients, who may have difficulty expressing themselves verbally, is crucial for providing timely and compassionate care.