Living in the Moment

MOST BEHAVIORAL PROBLEMS ARISE from unmet needs. The patient is lashing out because he or she’s hungry or misunderstood or bored. Behavior is communication, but it may be expressed because of the brain damage that complicates his or her understanding of the world. Dementia does more than just render people forgetful and confused. It also commonly makes people anxious, paranoid, angry, and depressed. Dementia may make elders delusional. They may think that the president is coming to get them in Air Force One or that the hospital has been taken over by Nazis or any number of fantasies. Families seldom realize how common truly disturbing emotional and psychological challenges are among dementia patients.

An elder can be receiving excellent, compassionate care and still exhibit extreme behavior: calling out endlessly, crawling out of windows, trying to hit caregivers.

I always advocate simple, practical solutions first. “The storm cannot hurt the sky” is a saying worth remembering when you have a family member struggling with dementia. If he or she is acting out but that behavior doesn’t create any practical problems (such as danger to the caregiver or the elder), then it may be best to try to just live with it. Absorb the behavior as the sky absorbs the storm. The person with dementia is more likely to reflect back the attitudes he or she is receiving. Be open and patient and smile; it goes a long way.

Never lecture an elder with dementia for “bad behavior.” He or she won’t understand and will reflect back your irritation. Communicate in a pleasant manner. Talk at a pace the elder can process—only one idea or task at a time—and wait for the elder to understand and then respond.

Many behaviors shouldn’t be treated with medication. Rather, people with cognitive decline should be engaged in activities they find rewarding. They should be free of pain. Their family members and their caregivers must slow down enough to understand the world as the elder sees it. Only then can they help the patient navigate the parts that don’t make sense, with love and empathy.

Sometimes, unfortunately, these measures don’t work. And the behavior challenges may become so severe that they interfere with the medical and day-to-day care of these loved ones. The elder refuses crucial diabetes medications, thinking he or she is being poisoned. Even with a gentle approach, a warm bathroom, and towels to cover the elder, a caregiver can’t give a bath to someone who keeps trying to strike out. If a patient needs help eating but tries to bite the caregivers, how can they keep the patient fed?

I use a test similar to one used by addiction counselors: If the behavior is interfering with the elder’s ability to live his or her life, then it’s something worth dealing with. In these more severe cases, I advocate the cautious use of medications. Often, treating pain adequately and with a more gentle medication, such as long-acting acetaminophen (Tylenol) and low-dose gabapentin (Neurontin), which is an anecdotal treatment to decrease pain or anxiety, or more gentle selective serotonin reuptake inhibitors (SSRIs) such as sertraline (Zoloft), escitalopram (Lexapro), or mirtazipine (Remeron) may decrease the elder’s distress and the behaviors that failed to respond to other measures.

If those treatments don’t work or the elder is a danger to himself or herself or others or is inconsolably distressed by delusions and paranoia, I use more complicated psychoactive medications. At times mood stabilizers like valproic acid (Depakote) or antipsychotics are needed to calm these serious symptoms.

This remains controversial, but working with thousands of families with distressed loved ones has proven that it often may be the most effective and most compassionate approach. Yes, these medicines can have serious side effects. Antipsychotic medications increase the risk of stroke by 2 percent and raise the risk of sudden death by 1 percent. The numbers may seem small, but they’re not trivial. I have seen a few patients (out of hundreds) have a stroke soon after the medication was given. The distress the elder is experiencing must outweigh this serious risk.

Such drugs shouldn’t be used for general restlessness, such as patients who repeatedly say, “I want to go home, I want to go home.” They shouldn’t be used for the convenience of the caregiver, just to help the elder sleep, or to replace engaging activities. However, they should be used when the behavior is endangering the elder or others, when the behavior prevents needed personal care despite the best behavioral approaches, or when unrelenting distressing delusional thoughts cause daily misery.

Most importantly, these medications are not to be used to sedate an elder into submission. If a patient is sedated, the cause needs to be evaluated. The sedating medications must be held back and any medical issues treated, only restarting the medication at a lower dose if serious symptoms persist. This elder should be examined every one to two months and the medications tapered when the person is doing well. The medical condition changes frequently as the disease progresses. We must adjust the treatment frequently, as well.

The list of troubling behaviors that elders with dementia exhibit is long indeed. They may forget or refuse to eat, or they may eat the same meal again and again because they can’t remember having eaten. They may refuse to bathe or change their clothes. In their mind, they’ve just done those things and how dare someone suggest they can’t handle such simple tasks? Because they can no longer distinguish help from a swindle, they’re at risk. They may be easily influenced by traveling salespeople or by charity fundraisers. Caregivers, and even people they meet on the street, may take advantage.

The Most Common Behavioral Symptoms

Agitation

Agitation is one of the most common challenges in dementia care. In my practice, I find that it often underlies other behavior challenges. It develops at some point in a majority of elders as the disease progresses, and it may pop up when you least expect it.

Agitation can include being easily upset, anxious, or restless, pacing, irritability, yelling, threatening, repeating words and phrases, asking the same questions over and over.

In the early days, people with dementia may be frustrated by their inability to navigate the world they knew. Their capacity to plan and get things done, known as executive function, is off, and they get angry at small things. They can’t understand why others are trying to pay their bills or take their car away; they’ve never had problems with that before. Those with vascular dementia caused by small strokes are more commonly engaged and present in the moment, but they cannot remember what happened before and may therefore think someone is stealing from them. They may misperceive the purpose of help or safety measures (such as having a caregiver in the home).

Toward the end, when they no longer seek to make sense of things, elders may get agitated because they can’t communicate what they want or what’s bothering them. Some don’t want to be touched, even for needed toilet care to prevent skin ulcers. Caregivers who understand dementia patients are crucial to help people with dementia communicate their needs and wishes, and this alone can calm many situations. Sometimes the best medicine is to provide enjoyable diversions and simple pleasures, like ice cream, music, and an upbeat attitude.

Paranoia

As some with dementia feel their mental acuity begin to slip, they begin to doubt themselves. They forget where they put things—not just glasses but also the car they parked at the mall. However, others have no self-awareness and think it is all the fault of (fill in the blank; usually the person who has given up his or her life to help the elder—the spouse, the adult child, etc.). It’s not unusual for a person with dementia to become paranoid about money or the car; of course those are two things that loved ones often do try to take away when they perceive that the elder doesn’t have the capacity to handle them.

Dementia patients may become angry with visitors and doctors. They count as an enemy anyone who is telling them there is a problem or keeping them from what they think they should be doing. They may become convinced that their food is poisoned. They may come to believe that their spouse is cheating on them or that their spouse is an imposter.

Wandering

If the world seems unfamiliar to people with dementia, it makes sense that some will go looking for anything that is familiar. Elders can insist on “going home,” even though they’re in the house they’ve occupied for thirty years; what they really mean is they want to return to where things made sense. Some wandering may just reflect poor short-term memory, leading an elder who thought he or she could just walk to the store and back to get lost. Wandering is among the most common reasons for moving someone to an assisted-living dementia care facility.

Loss of Inhibitions

Damage to the frontal lobes of the brain can remove social controls, reasoning and courtesies that have been a lifetime in the making. When affected, elders may misinterpret social cues. They can become convinced that caregivers and staff members want to be romantic or misperceive the intentions of someone trying to bathe them. They may touch people inappropriately, try to kiss a stranger or fondle a caregiver.

They may say things that they would never have said in the past. They may make tactless comments, create scenes at family gatherings, or start yelling out in the supermarket. They may burst into tears or become upset for reasons that may be difficult to understand.

Sensitivity is the key in these situations. We must help them navigate. We can keep them engaged, perhaps taking them to the opera or a grandchild’s school performance. Music is healing to the soul and calming. When that doesn’t work, there can be walks in the park. When going out of the home or facility is too much, we can have music and picnics at home. The schedule for an elder with dementia may seem sparse to the daughter who would prefer to do more, but multiple activities in a day may be tiring later in the disease. A chance to rest for an hour or so will lead to a more enjoyable dinnertime.

Compulsion

Some dementia produces repetitive behaviors. Some patients call out a name or just “Help, help!”—only to have no requests when the caregiver responds. Just as the caregiver leaves the room, the calling resumes. Others pace. Still others endlessly sort their junk mail. They may ask the same questions over and over and over. These behaviors are best addressed with engagement. Find things for the elders to do; purpose is important. Ask them to help sort socks, sweep, set the table, fold linens, garden in raised beds, or sort screws or spare change. Of course, other ideas include playing music that the person—not the caregiver—prefers, gentle massage, playing balloon volleyball, going for a walk, or even just holding hands. Sometimes the key is to treat pain. Long-acting Tylenol, 650 mg, three times a day, may take the edge off and not sedate. (Always review with your doctor before using any medical treatments.)

Depression, Apathy, Withdrawal

Some people with dementia may descend into apathy, refusing to see anyone. They may sit indoors with the blinds drawn and watch TV all day or all night. They may start refusing to participate in activities they had once enjoyed. Growing old is challenging for anyone, and it’s very common for depression to affect dementia patients at all stages of the disease. Left untreated, clinical depression makes dementia worse. Again, engagement in enjoyable activities is key. If older individuals refuse to accept the presence of a caregiver at home, perhaps it is time to go to assisted living, where they can see others and enjoy the music or art programs. Again the key is engaging activities; it’s not fancy décor, but the people and engagement that count.

Sundowning

While research has not pinpointed the cause, people with dementia may become more confused and agitated in the late afternoon and early evening, when the sun goes down. It is a cyclical delirium: Patients may be quite sociable every morning but start crying for their mother every evening or become terrified for no apparent reason. Patients may become unusually demanding, upset, fearful, or suspicious. Sometimes an afternoon rest or a distraction can help this problem. But sometimes the distress can be so severe that medication, sometimes antipsychotics, may be the answer. To be clear: this isn’t anxiety, so anti-anxiety medications shouldn’t be used.

Irritability

People with dementia face challenges that would be familiar to a toddler: they have trouble understanding the world and even more trouble getting the world to understand them. Elders with dementia often cannot express their needs and communicate that they have wet underwear, the pain of arthritis, a chill from a draft, or hunger.

Not surprisingly, this can make dementia patients irritable, even prone to tantrums. Of course, they’re not children and still need to be addressed with the respect of an adult, but their ability to reason and their impulse control has waned. Damage to the frontal lobes leads to the loss of social graces. These elders react differently to problems than they might have done in earlier years.

“Rule Out” Practicalities

Doctors have a method for narrowing the search for solutions to problems. It’s called “rule out,” which means to eliminate or exclude something from consideration. A blood test, for instance, can rule out whether signs of depression are related to thyroid disease or another medical problem.

In the treatment of dementia, it’s important to investigate whether behavioral problems stem from practical issues. Anger, paranoia, and inappropriate action can have a medical basis, but they can also be traced to a wet Depends, to hunger, to fatigue, or to pain. The elder with arthritis pain may express it as anger. He or she may be annoyed about a neighbor’s yelling, a bladder that will not empty, or serious constipation that hurts. If a man repeatedly tries to crawl out the window of his nursing home room, is he having hallucinations or does he not know how to get to the bathroom?

In science, a problem-solving principle is that the simplest explanation is usually the correct one. All the issues covered above should be considered and addressed before proceeding with more involved intervention.

Boredom Causes Trouble

Most people have heard the expression “Idle hands are the devil’s workshop” applied to children. I always emphasize to families and caregivers that the lack of something to do can actually make an older individual’s behavioral challenges worse. People with dementia need meaningful activities to fill their days.

What this means is different for everyone. Elders with vascular dementia tend to be high-functioning at first, in some areas, but often with very poor short-term memory. (It’s common for them to look down on others in a dementia facility.) They may like puzzles, playing cards, or outings to shows. Those with more advanced disease may spend hours on simple puzzles or manipulating simple gears or enjoying music, or they may only be able to engage in an activity for a few minutes before they move on. Gardening, baking with assistance, flower arranging, or going on an outing are great for most elders in many phases of dementia.

The trick is to find the right activity to allow an elder to enjoy what capacities he or she still retains. Don’t assume that just because someone has dementia he or she can’t do anything. I had one man with early-stage disease who still wanted to take his boat out on the lake. His family didn’t want him to do it, even though his symptoms remained mild. Going with someone who could do most of the work would have been a good work-around. In this case, the fears of his family limited this man more than his disease progression. Let your loved one enjoy as much as he or she can, for as long as he or she can. Having assistance will often allow elders to participate in activities they traditionally enjoyed.

The key point is that it’s not okay to park someone in front of a TV. If someone sits at home all day with a caregiver who says nothing or gets left in a nursing home common room for hours, that patient may get into trouble, acting out from frustration or boredom. Understandably, this often leads to restlessness, calling out, and sleeping during the day, followed by nurse requests for a sleeping pill at night.

Just the act of sitting without moving for several hours to watch TV may cause agitation from back pain. The leg muscles often become weak and contracted after remaining in the sitting position for hours at a time, increasing the risk of falls. Sitting for prolonged periods also increases the risk of pressure ulcers and blood clots.

The “no-parking” rule continues to be important as the dementia progresses and the elder’s connection to reality becomes more fragile. For instance, a person with more advanced dementia who watches a news report about flooding may become convinced that he or she is in danger and act out.

More commonly, the experience of sitting in a room with others and watching TV may overstimulate an older individual. The noise and the commotion can become overwhelming and lead to agitation.

Listening to music, painting, playing cards or dominos, or cutting out shapes from magazines are better alternatives to watching television. Ensure that the elder has frequent food and fluid. Elders have fewer sensations of thirst and hunger and may forget to eat. If nothing else works, I find ice cream a reliable alternative (sugar-free ice cream, if necessary, but watch for loose stool from Xylitol and other artificial sweeteners) that decreases irritability.

While some individuals with apathy and dementia can’t be engaged, these cases are rare. It’s more likely that the family and caregivers just aren’t doing what interests the person now.

Be patient, encouraging, and friendly. What did the elder enjoy in earlier years? If someone took pleasure in woodworking but can no longer handle tools, there is sculpting clay (with supervision; occasionally nonfood items can be ingested by those who don’t remember they aren’t edible) or “gears-and-wheels” sets for kids that can be put together and taken apart. One woman I treated had loved golf. After she was assisted in playing golf on a Wii video game console, she became much less aggressive.

Boxed In Too Early

Gabe was relatively young, only sixty-nine, and suffered from alcoholic dementia. After his wife’s death, he began drinking even more heavily. His behavior became erratic and angry. Twice, he ended up in a hospital with alcohol-related illnesses. Finally, his family placed him in a dementia facility, where the other residents were fifteen to twenty years older.

Gabe balked. He refused to participate in the life of the facility, shunning group activities. Although impaired, Gabe—an avid motorcycle rider—still saw himself as active and independent.

“I only want to get on my bike and go down the coast,” he said.

Gabe grew increasingly unhappy, angry, and aggressive. His sons were at a loss for what to do. Allowing him back on the road was out of the question. Balancing the risks against quality of life, the sons asked their father if he’d like an off-road dirt bike. Gabe said he would. His doctor told him he would need to train for it and go walking daily. He got out more, and found he enjoyed other activities.

In the end, Gabe never rode the dirt bike. He lacked the physical strength needed to handle the bike. But the act of taking his preferences seriously turned the corner for this man. He began to go golfing, and his agitation decreased as he became busy with outings.

When Behavior Demands Action

If you’ve taken into consideration preferences, practicalities, and personal engagement but your loved one is still having problems, what do you do? Behavioral issues may make caring for elders with dementia very difficult. Bedridden patients who absolutely refuse to bathe risk skin problems, and those who refuse to be repositioned every few hours may develop bedsores.

Elders who hit their caregivers or who become so distressed and paranoid that they refuse basic care may need medical treatment.

The standard medical approach to these problems hasn’t changed in many years. The first step is to rule out disease: Is there untreated pain from a bladder infection, pneumonia, or constipation? A rapid change in behavior might be caused by delirium, which would be marked by acute onset, waxing and waning symptoms, inattention, confusion, and change in level of awareness (too agitated or too sedated). Delirium is different from dementia. It is not a disease but a set of symptoms, a syndrome marked by confusion and inattention that is a medical emergency and is more common in people with dementia. The evaluation should be completed immediately, since mortality from delirium can be up to 65 percent.

There are no approved medications for the behavioral symptoms of dementia. The anticholinesterase inhibitors donepezil (Aricept), memantine (Namenda), and rivastigmine (Exelon) may help with delusions and behavior in a few people. However, these drugs will not reverse delirium. Most times, they will not stop an aggressive male patient from slamming his caregiver against the wall or keep an elder woman from repeatedly giving her caregivers the slip. They may decrease irritability and some aggression in 10 percent to 30 percent of those treated.

In unresponsive cases, after behavioral interventions and needs are addressed, it makes sense to discuss the risks and benefits of medication in treating behavioral issues. In my experience, there is a role for powerful medications such as antipsychotics or mood stabilizers such as Depakote. Telling families that “nothing can be done” is not only untrue, it’s also inhumane.