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

What is Triple-R?

That is a funny little name isn't it? So what is Triple-R? A ranch? (no)....

A Day at Triple-R

Every day dozens of older men and women gather together in a special place called Triple-R to enjoy each other's company, dance to their favorite song, try their hand at a new art project, laugh and joke with each other--and stay safe. What they have in common is some form of dementia--usually Alzheimer's Disease--that often hinders them from socializing and makes it impossible to do things we take for granted such as drive a car, cook or even use a telephone. But in an environment where the emphasis is placed on the person's abilities and where experienced staff can minimize the daily frustrations of living with memory loss and deal with the tougher issues of dementia (such as wandering, confusion and anxiety) , the participants thrive. Conveniently located in senior centers in Midtown as well as North and South Sacramento, you can hear peals of laughter coming from one of the program rooms where participants are enthusiastically finishing reciting riddles they learned in childhood at the prompting of a smiling staff member. "Round and round the rugged rock a ragged rascal ran!" shouts a participant triumphantly, remember the phrase exactly. The session will soon end and the participants will go for a walk in the tree-lined park around the senior center and then as evening nears, family members will arrive to pick their loved ones up for the night.

The Gift of Time

The time the participant has spent in the program has been a blessing for the family member as well. Studies now show that providing care long-term for an older adult can do significant damage to the caregiver's health if they don't successfully manage the stress that naturally surfaces when taking care of someone with special needs. Unfortunately, there are few resources available for families to cope with dementia. Triple-R offers expert care in a community setting, giving the person caring for a loved one a break and allowing them the freedom to take care of other parts of their lives. For some, this may mean being able to go to work. For others, attending their child's soccer game without having to worry about her mother wandering away and getting lost. For another person, just an afternoon to themselves with no responsibilities. Respite takes many forms depending on the individual circumstances of the caregiver.

The Results

Caregivers often remark that participation in the program is the cornerstone to allowing them to care for their loved one at home longer than if they were doing the care solely on their own. In a recent survey, 80% of caregivers with a family member currently enrolled in Triple-R reported they have been able to keep their loved one at home--rather than placing them in institutional care--because of their participation in Triple-R and 60% of current caregivers strongly believe their own overall health and wellbeing has improved since the person they care for started attending Triple-R. Caregivers also report that the participant is often more content hours or even a day after attending Triple-R.

If you are caring for a loved one with dementia, Triple-R might be able to help. A program of the City of Sacramento Parks and Recreation Department for 18 years and licensed by the State Department of Social Services, Triple-R is the leading adult day program in Sacramento county specializing in providing quality recreational and personal care for people with early, moderate and even late stage dementia. For more information about Triple-R visit our website at: www.tripler.org

Stay Hydrated!

Good hydration is essential for proper body function. Water maintains body temperature, distributes essential nutrients to cells and eliminates waste from the body. Our bodies simply cannot survive without it.

There are several unique factors that make hydration more challenging for someone 65 years or older. Older adults tend to lose muscle mass as they age and so they have reduced ability to store (or conserve) water. There is also a decreased thirst perception associated with age so this cannot be relied upon as a good indicator of whether the body needs more water. There is also the possibility of decreased renal concentrating, so you cannot rely on the color of the urine to determine if there is a problem (typically well-hydrated individuals will have lighter urine than those who are dehydrated). Caring for someone with dementia can add an additional challenge because the person may not be able to express their need for liquids or describe symptoms that may indicate dehydration.

Problems associated with dehydration can be very serious. A dehydrated person frequently experiences severe constipation, decreased functional abilities, fluid and electrolyte imbalance, increased number of falls, increased Urinary Tract Infections (which people with dementia are particularly prone to getting) and in very extreme cases, the body can go into shock and lead to death. Particular risk factors for dehydration include presence of a fever, diarrhea, vomiting, use of diuretics and under-nutrition.

There are several ways you can increase fluid intake if you are providing care for a loved one:

• Determine the person's food and liquid preferences and make sure these options are available on a daily basis.
• Provide encouragement and assistance during meal and snack times.
• Offer beverages throughout the day.
• If it helps, use a straw.
• Use smaller glasses and offer beverages more often if the amount is overwhelming in one sitting.
• If the person you are caring for has a tendency to choke or aspirate liquids, talk to the doctor about using a thickener to make swallowing easier.
• Keep a journal of food and beverage intake--if the person is consistently refusing 25% or more of the offerings, they need to be seen by a physician.

Remember too that you as a caregiver can also be at risk for dehydration as you concentrate of the care of your loved one and sometimes forget your own needs. If your loved one attends the Triple-R Program, we include water breaks 6-8 times in the day to ensure proper hydration. For more information about Triple-R go to: http://www.tripler.org/

Memory Loss- How do I know if it is something I should worry about?

We have all had moments when we walked into a room and forgot why we were there. Or we were driving home and suddenly couldn't remember the last five minutes of our journey. As we get older, we become more pre-occupied about whether our memory lapses are normal or not and we begin to watch our parents actions more closely to try to detect any signs they may have a problem.


So when should you worry?


The Alzheimer's Association has a great web link with the top 10 warning signs that may need to be evaluated for Alzheimer's Disease or a related dementia here: http://http//www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp

Often, one of the best indicators to know whether you should seek medical advice about your memory lapses is if you can remember that you forgot. Sounds strange, I know. But the average person will leave the room when they realize they can't remember what they were there for, only to *BAM* remember just what they were looking for five minutes later and go get it. That evening, you will tell your spouse about the incident and will share a laugh about how frustrating it is to do that, but that it happens to all of us. You remembered that you forgot and were able to share the story with someone else.

A person with memory problems, however, will not remember going into the room in the first place and if they are reminded they they went into the room to do something, they will deny that is true and they may get upset that you would make such an allegation, because surely they would remember it if that were true. In this case, it is strongly suggested that you make an appointment to see a doctor. There could be various reasons for the memory loss including things such as stress, depression or being deficient in certain nutrients or it could be something more serious and a doctor can help figure out what is going on.

For more information about Triple-R, go to: www.tripler.org