Understanding pain management
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
Non-verbal signs of pain
“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
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.
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
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
“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
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.