Alzheimer’s / Dementia

Assessing pain in a person with Alzheimer disease can be difficult. Pain assessment is usually based on the individual’s ability to verbally report his or her pain, but many people with Alzheimer disease have difficulty communicating. Some people are able to answer “yes” or “no” when asked if they have pain, and some can point to where it hurts.

To assess your mother’s pain, make sure that you ask questions more than once and in more than one way: “Do you have pain right now?” or “Do you have discomfort right now?” or “Does it hurt right now?” These are different ways of asking the same question.

If your mother is unable to verbally communicate her pain, observe whether she shows any change in her usual behaviours. Aggression, agitation, refusal of care, yelling, hitting, grabbing, crying, facial grimacing, increased confusion, and decreased eye contact may be signs that she is having pain. Other signs include guarding her body, grinding her teeth, reacting to touch, withdrawing from contact, and drawing up her knees. Also observe if she seems to show any pain when she moves or does an activity.

When assessing pain in individuals unable to verbally communicate, it’s important to check for potential problems other than pain. Assess whether your mother has any unmet needs. Is she hungry or thirsty? Does she need to go to the bathroom? Are there any other possible causes of pain, such as infection, constipation, a wound, or undetected fractures? Does your mother have any underlying conditions, such as cancer or arthritis, that might be causing her pain?

If you think your mother is having pain, find ways to make her comfortable. Contact your health care team for their assistance. Pain treatment may include medications for pain control and other strategies to promote comfort, such as repositioning or massage. Your mother’s pain and what relieves it will need ongoing monitoring and evaluation.

You may find helpful guidance about assessing pain from Romayne Gallagher, MD, in this video: Pain and cognitive impairment: Reading the cues.

Alzheimer disease is a progressive disease of the brain. It’s characterized by loss of memory, judgment and reasoning, changes in mood and behaviour, and eventually a reduced ability to perform the activities of daily living, such as eating, dressing, bathing and toileting.

In end-stage Alzheimer disease, the brain is no longer able to tell the body what to do. It can be very difficult to predict the length of Alzheimer disease, and each person’s experience of the illness is unique. However, the disease does follow a general pattern as it progresses.

Alzheimer disease slowly depletes a person’s ability to function. While it generally starts with lapses in memory or judgment, it progresses until the person is unable to communicate, make decisions, remember, or perform complex activities. Eventually, a person with Alzheimer disease has trouble with bodily functions, such as swallowing, bowel and bladder control, and coughing.

When swallowing is hard, food may get into a lung, which can result in pneumonia. Difficulty swallowing can limit a person’s intake of food and fluids. But people with advanced illness have decreased appetites and probably won’t feel hungry even when they eat and drink less. Although feeding tubes help supply nutrition to people when they can’t swallow properly, they are not usually helpful to people with Alzheimer disease.
See: The feeding, intravenous fluids and nutrition section in Lack of Appetite and Loss of Weight. 

When a person is no longer able to swallow food, fluids and medications, the focus shifts to ensuring the person’s comfort, such as providing regular mouth care. In the final days of life, fluids and medication are not usually given unless they are required for symptom management.
See: End of life care on the Alzheimer Society of Canada website.

As Alzheimer disease advances, a person’s mobility becomes very limited, and he or she may stay in bed most or all of the time. The person may not be able to move in bed, so regular assistance with repositioning and skin care is important. Decreased mobility and movement may lead to body stiffness, which may make the person uncomfortable. People with Alzheimer disease require ongoing pain assessment and care strategies to ensure their comfort.

Sometimes pain medication is required to relieve general body aches or because of other medical problems such as arthritis. Because people with end-stage Alzheimer disease lose their ability to communicate, non-verbal signs, body language, and changes in behaviour (such as increased agitation, anxiety, or sleep disturbances) become important signs of pain or discomfort.
 

Like other progressive illnesses that deplete energy reserves and strength, people with advancing Alzheimer disease eventually become bedridden. Without the strength to cough and clear their lungs of mucous and secretions, they are more likely to develop pneumonia.
See: When Death is Near to learn more about the changes that commonly occur in the final days and weeks of advanced illness.

If a person has no advance care plan, family members will have to decide on end-of-life care. Around-the-clock supervision of a person with end-stage Alzheimer disease is very difficult for family members to do on their own. Most people at this stage of the disease are cared for in a long-term care facility. However, if family members decide to have their loved one die at home, home care services can provide them with extra support. Whether a person is at home or in long-term care, the family will be faced with many decisions, such as will a transfer to acute hospital care take place to give intravenous antibiotics for an infection?

You may find helpful guidance from Romayne Gallagher, MD, in this video: Crucial conversations: Providing a roadmap for decision-making.

Telling someone about the death of a family member is difficult for most people, but it is even more challenging when the person you have to tell has dementia. Your approach will depend on the extent of the person's disease, where the person is at and how much they remember.

Often the first thought is to try to protect the person with dementia and not confuse them. Some people may avoid discussing death for this reason. However, it is important to remember that your aunt is still the person she has always been, and to respect that she can still feel the same emotions; she just may not be able to express them the way she used to. Also, not sharing the news may confuse her more and make it harder for her to cope, especially if her husband visited regularly.

There isn't one approach that works for all people with dementia, but there are a few things to consider. Several sources give these recommendations for sharing the news of death with someone who has dementia:

• Have only one person break the news, to avoid overwhelming your aunt with a group of people.
• Find a quiet, comfortable spot, and choose a time of the day when your aunt is well-rested.
• Use clear sentences like ‘your husband has died’, and avoid phrases like ‘passed away’. This improves the chances that she will understand what she is being told.

After you tell your aunt about her husband’s death, it is important to watch how she reacts:

• What does she say?
• How does her facial expression change?
• What does she do?
  

Reading these cues will help you to connect with how she is feeling at the time, as well as to know what to say if she asks about her husband in the future. For example, if you are talking about her husband, a change in her facial expression may tell you she is distressed. This in turn may tell you it is time to stop talking about his death.

Responding to her emotions will help her to feel supported and comforted. You may simply acknowledge her feelings by saying ‘this must make you feel sad’. Your conversations may shift into reminiscing about her husband and their times together, which she may find comforting.

You may find it helpful to read this article from Alzheimer Scotland, Loss and Bereavement in People with Dementia. It offers practical tips and strategies for sharing news of a death.

Also contact your local Alzheimer Society office. They may have additional suggestions and/or counselling staff to guide you in talking to and supporting your aunt.