By Michael A. Bower, BA

When I first started working with people with dementia in the late 1980s, I had a doctor tell me that people with Alzheimer’s don’t feel pain. Even as green as I was then, I knew that couldn’t be true, and I was right! So how did that myth get started? Why would anyone think that?

The answer is simple; people with more advanced dementia don’t express their pain in ways that we expect them to. They don’t just walk up and announce that they have a headache or that their back hurts, but they do tell us.

How people with dementia express their pain will depend on what stage of the disease they are in. For people who can still use language but are going backwards in time, you may find pain expressed in terms borrowed from previous pain experiences. I knew an 86 year old lady who would walk up to staff members and tell them that she was in labor. While it was obvious that she wasn’t pregnant or in labor, it was also obvious that she was in distress. After a discussion with the family we discovered that the lady had given birth to six children and that her labor had always been in her lower back. With a little more research we recognized that this was the lady’s way of telling us that she was constipated! And we soon came to realize that she put all of her aches, pains and physical needs in terms of pregnancy, labor and delivery. We had broken her “code” and could now better help her.

When people have lost all of their language, they still use non-verbal skills to communicate pain. Pacing, disrobing, yelling, hitting out, swearing, flinching, protecting an area of the body, crying and moaning are a few of the ways they can be telling us, especially if these are changes from their usual behavior. Some people may want to be left alone when they are in pain, while others might become clingy and want constant attention.

As a caregiver you want to get some basic information, especially if you think medical help is needed:

• Where is the pain? Ask the person if they can point to where it hurts. Use language the person is familiar with (in my family we always called bumps, scratches and bruises “owies”). If the person can’t point then you can, very gently, touch areas of the body and observe the person for reactions and ask if it hurts where you are touching – it is usually pretty obvious when you get to a tender area.
• How bad is the pain? This takes observation; look at the quality of the person’s pain indicators. For example, is he or she crying out louder or more frequently?
• What kind of pain is it? Can you tell if this is a pain that comes and goes or is constant? Can you tell if it is a jabbing, sharp pain or a dull throbbing pain? If you use familiar words, can the person give you an accurate yes/no response when you ask about the pain?
• How long has the person been in pain? Has it been hours, days, weeks, etc.?
• When does it occur? Are there certain times when you see the person’s pain reactions, like first thing morning, right after eating, when standing up, or following exercise?

Keeping a written log to track the items above can help; sometimes it’s hard to remember when a person’s behavior changed or a bruise appeared after a few days have passed.

Remember, pain is the body’s way of telling us that something isn’t right. When people can no longer speak up for themselves, it is up to those of us who care for them to be alert, know what we are looking for, and know how to report and be an advocate for the person that we care for. Interested in learning more? Register for Discovery 2016 today! 

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