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 co-morbidities. 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causing the person with dementia to communicate their distress through their behavior, such as becoming agitated, withdrawn or combative.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 behaviors or physical changes such as sweating or elevated heart rate. A change in the person’s behavior, 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, cryingFacial expressions such as looking tense, frowning, grimacing, looking frightenedChanges in body language such as fidgeting, rocking, guarding a part of the body, becoming withdrawnBehavioral changes such as increased confusion, refusing to eat, change in usual behavior patternsPhysiological changes such as temperature, pulse or abnormal blood pressure, perspiring, flushing or becoming palePhysical 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.
Comforting the person
“You have to take yourself out of the situation and think of the person who is dying. It’s not about you; it’s about your loved one. It was about making my mom comfortable and going through the transition from life to death with her.” – Debbie George, a caregiver in Nova Scotia
📷Even though the person may not seem to be aware of you during the last stage, your presence is still a comfort. Here are some suggestions on how to offer comfort to the person:
Connect through the senses such as holding the person’s hand, smelling a perfume together or listening to music that the person has enjoyed in the past.Continue to touch and reassure the person that you are close by.Speak calmly and naturally.If needed, wash the skin gently and blot dry, using as little force and friction as possible.Raise the head of the bed to a 45-60 degree angle if breathing is difficult OR if your patient is not using a hospital bed then 📷simply raise the person’s upper body with pillows to assist with breathing.Gently massage hands and feet with lotion.Tell stories, reminisce about past events, read aloud or listen to music together.Keep lights low. (NOTE: The patient’s eyes become very sensitive to light at this late stage. Their ears also become sensitive to loud sound at this stage.) When the person no longer accepts food or drink, keep the lips moist and get direction on providing mouth care including cleaning the teeth, tongue and inside of the mouth.Speak soothingly and reassuringly to remind the person that they are safe and cared for.Focus on the person’s physical, emotional and spiritual needs.Continue to use proper pain control medications to relieve any pain or discomfort.(NOTE: If your patient was in pain prior to being in the end-stage of his/her disease, you can assume your patient is still in pain even though they are unable to respond at this late-stage of the disease process. Continue administering the prescribed pain medications around the clock via a route they can tolerate such as a rectal suppository, sublingual route (liquid medication given by dropper under the tongue), buccal route (liquid medication given by dropper on the inside of the mouth so it becomes absorbed through the mucous membrane). When the patient begins to have difficulty swallowing, notify the hospice nurse to have the medications transferred over to routes that are more practical and better tolerated at this late stage.)Use slow, gentle movements to re-position the person to relieve pressure areas but do so in one part of the body at a time. (Note: The patient should be turned/repositioned every two hours to avoid decubitus ulcers or pressure sores/ulcers. Keep the skin clean and dry. Moisturize with a thick cream/lotion to help avoid pressure sores, especially on the bony areas like the sacrum, coccyx bone, elbows, heels, and behind the shoulders. Be sure to keep the pillow case clean and dry and remember to check the back of the patient’s head often. He/she lays a lot on the back of the head so it is possible for the pressure sores to occur at the bony prominence at the back of the head. The area often goes unnoticed because it is often covered with hair. As long as there are no skin openings, gently massage the head and scalp with slightly warm olive oil or almond oil and comb through. Place a soft, cotton towel on top of the pillow case to absorb the oil overnight. Remove the towel in the morning. Gently massage the head and scalp once a day to help circulation and to comfort the patient.)Follow the person’s lead. For example, if they wince when trying to move them, stop doing it and try at a later time.
“She wanted us to hold her hand at all times. We felt we were giving her comfort. We stayed with her and stroked her hand, making her transition as easy as possible.” – Debbie George, a caregiver in Nova Scotia
It is important to check with health-care professionals before offering any food or fluids to the person. Some people may begin to experience difficulties with swallowing.
Saying goodbye when the end is near
📷Rachael Mierke got the call at 2 a.m. from a nurse at the long-term care home letting her know her father’s breathing had changed significantly and that the end was near. Rachael appreciated and was comforted by the nurse’s compassionate words. “She said, ‘I’ll stay with your dad until you come, so he isn’t alone.’ I knew someone was watching over him and that she cared. That was beautiful – that intimacy and thoughtfulness,” says Rachael, a First Link® Coordinator with Alzheimer Society of Manitoba in Winnipeg.
As a former palliative care nurse, Rachael recognized the familiar pattern of end-stage breathing as soon as she arrived in the room and saw her dad. He liked country and western music, so she put on some Johnny Cash songs in his room. “We watched him and kept the music quiet because dad was a quiet man. I said we were with him and loved him. I talked about how he had been a good father and about all the good things he had done. I believe hearing is the last thing to go and thought that if he could hear us it would be soothing,” she says.
As Rachael and her sister stayed with him during those final hours, something remarkable happened. “My sister and my dad had a difficult relationship,” explains Rachael. “Near the very end, dad sat upright, looked at my sister and said, ‘Well, well, well.’ He was so pleased to see her. She looked at him and said, ‘Dad, I’m here.’ It was a perfect death. There was communication between them and his pleasure in seeing her. It was a very powerful experience for me and a gift for both of them,” she says.