SCOA: Pain and Dementia

There are a number of myths about pain and aging, such as "People with dementia do not feel pain." Beliefs like this cause needless suffering.
Your family member may use a variety of words and behaviours to express their pain.
Family caregivers can provide important information to their family member's health care provider in order to achieve the best possible pain management plan.
It is a challenge to recognize pain in a family member with dementia.

Needless suffering is avoided when pain is recognized, reported to a health care provider, and treated with therapies such as medications, exercise, and relaxation techniques.
When pain is promptly recognized and properly treated, your family member will have a greater capacity to enjoy meals, walks, and other favourite activities.

Myths About Pain

There are a number of myths about pain and aging, such as:

Older adults who have dementia do not experience pain.
Older adults are easily addicted to pain medication.
It is normal to have pain when you are older.
Older adults with dementia cannot tell you when they have pain.

These myths contribute to pointless suffering for older people with dementia and pain. Don't let this be the case for your family member.

Words Describing Pain

Your family member is the best one to report on their pain. Ask your family member if they have pain. They may be hesitant to use the word "pain", so watch for other words like

Aching
Hurting
Soreness
Burning

Use the word or words your family member uses to describe their pain when reporting it to their health care provider.

Pain-Related Behaviours

Over time your family member may lose the ability to speak or may not make sense when they do. Therefore, it is very important to be able to recognize behaviours or actions that indicate pain. Some of these pain-related behaviours include the following:

frowning, grimacing, crying
swearing, moaning, calling out, noisy breathing
fidgeting, pacing, rigid posture
guarding an area of their body, not wanting to move
hitting or striking out
withdrawing or resisting when someone is helping with personal care
refusing food
change in appetite, rest periods, or sleep patterns
increased confusion, crankiness, or distress

As their caregiver, you are familiar with your family member's usual behaviours. Watch for any changes in their behaviour patterns, especially at the following times:

while they are at rest, sitting in a chair or lying in bed
during movement – when walking or changing position

(Most pain-related behaviours are more easily recognized during movement.)

Questions to Consider

The answers to the questions below will provide useful information to your family member's health care provider and help to determine the best pain management strategies plan.

What words does your family member use to describe their pain?
What behaviour changes have you noticed when your family member is at rest or during movement?
What time(s) of the day do you notice changes in your family member's behaviour?
How many times a week do these behaviour changes occur?
What helps to relieve your family member's pain?
What makes your family member experience more pain?