Dementia and end-of-life care
Understanding pain management
It is important to remember that people with dementia feel pain, just like everyone else. Major causes of pain often stem from immobility, arthritis, infections or a combination of conditions, referred to as comorbidities. A person who has constant pain needs regular pain medication to control it and be comfortable.
Challenges of recognizing pain
As a person with dementia progresses through the disease, they will become less and less able to express themselves verbally, thus making it increasingly difficult to tell others when they are in pain. As a result, pain often goes undetected and untreated, causing the person with dementia to communicate their distress through their behaviour, such as becoming agitated, withdrawn or combative. You may be able to find out if the person is in pain by asking direct simple questions such as “Are you in pain?”, “Is it sore? or “Does it hurt?” but often the person with advanced dementia will not be able to answer your question verbally.
Non-verbal signs of pain
In order to ensure that the person with dementia is not experiencing untreated or inadequately managed pain, it is important to look for non-verbal signs of pain such as grimacing, moaning, uncharacteristic behaviours or physical changes such as sweating or elevated heart rate. A change in the person’s behaviour, which may indicate pain, is often noticed first by family and friends.
“My siblings and I learned to recognize the subtle signs – wincing, frowning or increasing agitation – that indicated our father was in pain or discomfort. Having an end of life comfort care plan in place meant we could request an extra or increased dose of morphine to alleviate his suffering.” – Barbara Dylla, a former caregiver in Montreal
This intimate knowledge of the person with dementia is valuable and should be shared with care providers. However, showing such signs does not always indicate pain and the person may instead be scared or frustrated. All sounds and changes should be considered for what the person is trying to communicate.
Pain Scale for people with dementia
Pain scales can also help staff and family caregivers assess whether a person with dementia is in pain, especially if the person can’t tell you in words.
These pain scales record the signs and symptoms that are likely to indicate the presence and intensity of pain that the person is experiencing. For example, the Abbey Pain Scale can be used to help measure pain for persons with dementia who cannot express themselves verbally. This scale suggests six possible signs of pain:
- Vocalizations such as whimpering, groaning, crying
- Facial expressions such as looking tense, frowning, grimacing, looking frightened
- Changes in body language such as fidgeting, rocking, guarding a part of the body, becoming withdrawn
- Behavioural changes such as increased confusion, refusing to eat, change in usual behaviour patterns
- Physiological changes such as temperature, pulse or abnormal blood pressure, perspiring, flushing or becoming pale
- Physical changes such as skin tears, pressure areas, arthritis, contractures
Opioids, such as morphine, are often the most effective medications to relieve moderate to severe pain. Pain medication is often given regularly to control pain in the last weeks and days of illness. In addition to morphine, medications for anxiety or hallucinations are often given because they can be highly effective in providing a more comfortable end of life.
Since pain is easier to prevent than it is to relieve, it should be treated on a regular basis rather than on an ‘as required’ basis. Some caregivers have concerns about the use of opioids, fearing that the person may develop an addiction. Many experts believe that the risk of addiction for people who take opioids for pain near the end of life is very low because a brain in pain reacts differently than a brain not in pain. Discuss the benefits and risks of opioids with health-care providers to help you decide if they are the best option for managing pain, especially toward the end of life.
Next section: Comforting the person