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

Medication Safety

Almost every American adult takes at least one pill or supplement daily. While medication has numerous benefits, including prolonging lifespan, providing freedom from pain and preventing disease, there can also be considerable drawbacks. With an astonishing average of 11 prescriptions taken per person every year, the chances of serious drug interactions are highly likely, not just between the prescriptions, but also with supplements, food and alcohol. While the most serious interactions can be dangerous and need immediate attention, often the most troubling are the side effects that are an expected part of taking the medication.

It is additionally challenging being the person responsible for the medication of someone with memory loss. Any number of problems can come up including the person with memory loss not understanding that the medications need to be taken, physical ailments such as swallowing difficulties, making medication consumption part of a daily schedule, finding time for doctors visits and picking up refills and getting information from the individual about whether or not they are experiencing side effects. The side effects can sometimes make already problematic situations even more difficult, such as insomnia or increased urinary incontinence for someone who already experiences these as part of their memory loss disease.

As the caregiver, you become both the advocate and the detective. The goal is to make sure that the person with memory loss has the medicine they need to keep them comfortable and healthy (this could include pain management) and constantly weigh positive benefits with negative side effects to determine if your loved one has a balanced medical regimen.

Some typical medication challenges include:

Too Much Medication: Having multiple medications to treat multiple chronic conditions, and in some cases, additional medication to treat the side effects caused by the original medication.

Not Enough Medication: including a lack of diagnosis for severe depression or pain. Because people with memory loss have difficulty explaining how much pain they are in, they often receive less treatment than the person who can adequately describe their pain, and so are often left untreated for pain.

Unnecessary Medication: Without regular checkups with the doctor, your loved one could be taking medication they no longer need, either because the condition no longer exists (for example, high cholesterol) or because another medication now covers the same condition.

Wrong Medication: If your loved one is not responding in the way it was anticipated the drug should work, they may have been diagnosed incorrectly or that particular medication does not work for them (this could include medication for anxiety, depression and insomnia).

Wrong Dose: You may be offering the wrong dose, or the doctor prescribed it wrong or the dose that was prescribed is not working for the patient. Check the label to make sure you understand the dosage and how often the medication should be taken. Some drugs require the person to take it for a certain length of time and then to adjust it depending on the side effects the person is experiencing (for instance, high blood pressure medication is often adjusted when the person experiences extreme lightheadedness, which usually manifests as falls or unsteady posture in people with memory loss).

Always find out from the doctor if any new medication that is prescribed for your loved one is going to interact with other medications already being taken, what side effects you should expect from the new medication, how long the doctor thinks the patient will need to be on the medication, if there are alternatives to taking the medication and when you should call the doctor if you think the new medication is adversely affecting your loved ones health.

For more information about the Triple-R Adult Day Program, please visit our website at: www.tripler.org

Dementia 101

Triple-R provides a series of workshops called Triple-R University with the goal of increasing awareness and understanding of what it is like to live with dementia. The first workshop in the series is called Dementia 101. At the end of the three hour workshop, you will:

• Understand the difference between normal aging and dementia
• Be able to recognize the symptoms of Alzheimer's Disease and other dementias
• Know the common causes of dementia and what you can do to minimize your risk of getting dementia.
• Understand the process of how a person becomes diagnosed with dementia
• Have a basic understanding of the effects of dementia on the brain, functioning and behavior

We have a workshop coming up and would love to see you!

Triple-R University: Dementia 101

When: Friday, July 23, 2010 9am-12pm

Where: Hart Senior Center, 915 27th Street, Sacramento, Ca 95816

How much: free!

No need to RSVP...all are welcome! If you are currently a caregiver and need to have care for your loved one while you attend this workshop, please call Stephanie Wilson at 916-808-1591