Home > Communication, Diagnosis, Medical issues > Pain and Dementia, Part 2

Pain and Dementia, Part 2

Recent comments and search engine inquiries have led me to give a lot of thought to the subject of pain as it relates to dementia.  Actually, this subject can be broken down still further into not only the management of pain, but how we recognize that the individual is experiencing pain.  And often it’s harder than one might think just to determine that someone is in pain, or to determine where that pain is coming from.

I’m not aware of anything about dementia, of a direct nature, that could cause pain.  Dementia is caused by deterioration of the brain, and the brain itself doesn’t feel pain.  One possible exception to this this that comes to mind might be damage to the blood vessels in and around the brain that occurs with vascular dementia, which do have pain receptors.  But there are a number of secondary factors that could influence pain and/or its management.  Some of these are as follows:

1.  As we get older, there is a tendency to ignore pain or to rationalize it as “just a part of growing old.”

2.  Different people feel pain differently, and each responds to it in their own way.

3.  As persons with dementia decline, their ability to report pain also deteriorates.  They may have difficulty communicating, or recalling that they have been in pain, or interpreting the sensations their body is sending to the brain.

4.  Persons with dementia may not remember to take pain medications, or those prescribed for the treatment of other health concerns.  They may also forget non-pharmaceutical procedures or treatments that have been prescribed for them, such as checking their blood sugar, following a prescribed diet, or using a walker.

5.  Some pain medications may increase the level of confusion in a person with dementia, and this may motivate their caretakers to with-hold their use.  Paradoxically, however, pain itself can produce increased confusion.

6.  Some caregivers may also worry about the addictive nature of certain medications used for pain relief.

Some causes of pain for a person with dementia may include urinary tract infections (which occur with a greater frequency in persons diagnosed with dementia), sitting or lying in one position for too long, wearing poorly-fitting clothing or shoes, mouth pain related to tooth decay or ill-fitting dentures, bed-sores, and undiagnosed fractures.   The person may have arthritis or diabetes, or have a history of cardiac problems, or have any of a number of other conditions.

Often, the first problem that has be surmounted is determining if the person with dementia is in pain.  He may no longer be able to communicate, at least verbally, that he is in pain.  Or, he may have a vague awareness that something is “not right,” but be unable to conceptualize that pain is the sensation that is being felt.  Interestingly, a person for whom English is her second language may actually lose the ability to understand or to speak anything but her native tongue.  I remember encountering a woman who could no longer speak anything but German, which none of her caretakers were able to understand, which caused a great deal of consternation for all concerned.

Eventually, though, all persons with dementia will reach a point where they can no longer express themselves verbally, regardless of their native language.  But that doesn’t mean that he isn’t able to communicate.  Often, this person is saying a great deal, if we just use our powers of observation and spend a little time interpreting their behaviors.  I like to tell family members and caregivers that Mom can no longer speak our language, so it’s up to us to learn hers.

So many times, I have family or facility staff come to me about helping them to correct a person’s problem behaviors.  But it has been shown that probably 95% of behaviors in these people are a form of communication.  And at least 50% of the time, what they are trying to communicate to us is that they are in pain.  Some of these behaviors are readily apparent.  Does the person cry out when touched, or grimace when they try to walk to the bathroom?  Does he grow restless, or fidgety, when it gets close to time for his bath?  Does she refuse to get out of bed, or dress herself, even though she has done so easily only a short time before?

Often, if we can answer these questions and others like them, we can do away with the need for pain medications, or use them less frequently.  At other times, we can give needed medications where none were given before.  (For example, a woman who was noted to have a sad expression most of the day, and who had rheumatoid arthritis, benefited from being placed on a low dose of Tylenol given regularly throughout the day.)

It may be that an evaluation by the physical, occupational, or speech therapist is in order.  Perhaps adding a cushion to the wheelchair, to provide for better positioning, will help.  Or having the person do some exercises to return flexibility to a stiffened joint might be in order.  And, more than once, I have found that changing a person’s diet to make her food easier to chew will cause her to eat more, and avert a weight loss.

There are pain rating scales available for use with persons who have dementia.  They basically assign a numerical value to various behaviors and facial expressions, for those who are unable to tell us any other way.  But what’s most important here is for us to become good at using our powers of observation, paying attention to the whole person and being familiar with their background (cultural as well as medical).  Make use of available resources, including other health professionals, in determining the source of pain and its remediation.  And you may need to try more than once before you solve the problem.

In the future, I plan on adding a page to this site with resources for use by caregivers, as well as persons with dementia, including pain rating scales and other information.  If anyone has any suggestions for addition to this file, please do let me know.

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