Pain Management for a person with dementia

Pain is usually detected when people verbally communicate their discomfort. Pain researchers have described pain as having three components: Sensory (the actual sensation), Cognitive (knowledge about the sensation) and Emotional (the emotions associated with the knowledge). People who have dementia often have a difficult time communicating the last two components, Cognitive and Emotional. This does not mean the person does not feel pain, it simply means there are barriers to effective communication relaying where the pain is and how severely it is being felt. Recognizing and properly treating pain for a loved one with dementia is often an agonizing dilemma for family caregivers. Studies show that people with dementia are regularly under-treated for their pain. In one study that tracked post-operative care, 67% of older adults with normal cognition received pain management medication as compared to only 17% of those with dementia. Complicated with communication barriers, are often social and behavioral barriers. Older adults in particular tend to downplay the pain they are in or to not report it at all, thinking that being in pain is just a normal part of aging. This can make diagnosing pain in a person with dementia all the more challenging. Often the response when you ask a person with dementia if they are in pain is "no" either because this is an ingrained social response or because it is too hard for the person to communicate where they are experiencing pain.

In 2002, a tool called The Assessment of Discomfort in Dementia (ADD) Protocol was created to improve comfort and decrease episodes of discomfort in people with advanced dementia. The authors observe that a person's discomfort can sometimes be resolved by simply meeting his or her basic needs. Therefore, a basic needs assessment should be done when you suspect discomfort in someone with dementia. An assessment of the following may reveal the source of discomfort:

• Does the person need his or her glasses or hearing aid?
• Is the hearing aid working properly?
• Is the person's discomfort due to toileting or incontinence problems? Hunger? Thirst?
• Is the person too hot or too cold?
• Has the person been sitting in one position too long?
• Does the person need more stimulation? Less stimulation?

If basic needs have been met and the person still seems distressed, look for nonverbal signs of discomfort or pain, including the following:

Facial Expressions: Grimacing, frowning, blinking, tightly closed or widely opened eyes, frightened, weepy, worried or sad.

Mood: Irritability, confusion, withdrawal, agitation, aggressiveness

Body Language: Tense, wringing hands, clenched fists, restless, rubbing/holding body part, guarding body part, noisy breathing

Voice: Moaning, mumbling, chanting, grunting, whining, calling out, screaming, crying, verbally aggressive

Behavior: Change in appetite, sleep, gait, function, participation, exiting, wandering, physical aggression, socially disruptive or inappropriate actions, resisting care

If potential pain behaviors are identified, the following protocol can be used to help your loved one:

Step One: Look for physical causes of discomfort such as an infection, inflammation or acute illness. Contact your health provider immediately if you suspect any of these conditions.

Step Two: Explore the person's history for possible sources of potentially painful conditions. For example, a history of headaches or arthritis may be the cause of the current pain. Treat accordingly.

Step Three: If you cannot find any acute or historical reason for the pain, implement non-pharmacological comfort interventions, including distraction, relaxation, massage, application of heat or cold, change of position or exercise.

Step Four: When non-pharmacological methods are ineffective, call your health provider and ask about possibly giving the person a non-narcotic analgesic (examples: Tylenol or Advil).

Step Five: If non of the above work, request an appointment with your health care provider for other possible drug interventions or physical therapy.

As a caregiver, you are a vital link to the pain management of the person with dementia. Keeping a journal of non-verbal indications of pain including what behaviors you observe, what time of day they take place and how you respond to those signs, is invaluable information for your health care provider.

For more information about Triple-R Adult Day Program go to: www.tripler.org