CHAPTER EIGHT
Treating Challenging Behavior with Medication
TREATING THE BEHAVIORAL SYMPTOMS of dementia remains controversial. There is a sense in the medical community that dementia’s behavioral issues are insoluble. In study after study of medications, the conclusion is that nothing works.
Paradoxically, this has resulted in the common prescription of anti-anxiety drugs like lorazepam (Ativan), alprazolam (Xanax) and clonazepam (Klonopin) for people with dementia. While tranquilizers like these may yield short-term results—improved behavior for a few weeks—they’re highly addictive. If used for more than a few days in elders with dementia, the withdrawal syndrome often leads to delirium or worse behavior in elders. These drugs can remove inhibitions, cause paranoia, and increase confusion and falls. The person may be better for a few hours after a dose, but if these meds—particularly Xanax, which is twice as powerful as Ativan and shorter acting (the “crack” of anti-anxiety drugs)—are used more than a couple times a month, they often cause more problems than they solve. These drugs start to produce more agitation, poor sleep, or confusion. That leads to an increased dose of Xanax, which increases the withdrawal symptoms, which leads to another increased dose. It becomes a vicious cycle.
A common view in dementia care is that behavior-altering medications should never be used in the treatment of dementia. In this view, all aggressive or anxious behaviors stem from unmet needs that aren’t understood by caregivers. Elders get agitated because something’s wrong. Their caregivers aren’t doing the right thing. They’re in pain. Their family isn’t being attentive.
In my practice, I have found that it’s often not that simple. Linking all agitation to environmental causes is akin to the now-debunked notion that autism or schizophrenia are caused by a lack of parental warmth. Sometimes behavioral or practical measures won’t solve the problem. What if a family is loving and attentive? What if a family is attuned to practical issues and medical needs? What if the elder is still lashing out and uncontrollable? These families didn’t cause their elder’s agitation.
Some doctors feel there isn’t yet enough evidence to establish drugs as part of the standard of care for behavior problems in dementia. There’s little conclusive research in this area. Just as most drugs aren’t tested in children under six years of age, few pharmaceutical studies focus on complicated medical patients over sixty-five, with or without dementia. In the doctors’ view, using drugs in this way is like using cough syrup to treat a case of pneumonia; it doesn’t treat the underlying cause of the disease.
A better analogy, in my experience, would be that certain powerful psychoactive medications are like chemotherapy. They’re difficult to use correctly, and there is higher risk of harm. However, like chemotherapy, these medicines may relieve serious symptoms. Psychoactive medications might mitigate paranoia or delusions that can lead elders to assault others, injure themselves, or live with serious distress that makes their days miserable. In these cases, the medication can restore quality of life. As with chemotherapy, the elders should be followed closely to assure the use of the minimum dose needed for the least amount of time.
However, with careful follow-up, most elders can have symptoms relieved—less pain, distress, or aggression—but remain alert, not sedated. When I prescribe psychoactive medications to treat the behavioral symptoms of dementia, I am trying to make my patients’ lives better. I am trying to allow them to enjoy as much of life as they can for as long as they can.
Not treating these behavioral problems robs the patients and their families of the healing that can allow quality relationships. It keeps the elders in a constant state of fear and panic. When dementia patients are antagonistic—claiming they’re being held prisoner, that their spouse is unfaithful, that all their food is poisoned, that their children are trying to control them—everyone suffers, the elders most of all.
Treating behavioral symptoms can improve patients’ lives, but that doesn’t mean there aren’t trade-offs. Make no mistake: these are strong medications that can carry difficult and serious side effects. They’re not approved by the U.S. Food and Drug Administration (FDA) for use in dementia. These psych medications, particularly when used incorrectly, may cause documented harm: sedation, aspiration, dehydration, weight loss, blood clots, and pressure ulcers from the sedation. It’s extremely common that behavior medications, particularly the Xanax and Ativan type, lead to overtreatment and sedation, The key is to reassess the situation every few weeks and start tapering the medications when the elder is alert and engaged. It’s never okay to wait for them to go facedown in their lunch to make a medication change.
I believe antipsychotic drugs are worth the risk, if carefully monitored for psychotic symptoms of paranoia and delusions. This isn’t a matter of giving patients a pill so that doctors and caregivers have a better day; it’s prescribing medications to make the patient’s life better. When relieved of anxiety, delusion, compulsion, paranoia, and anger, dementia patients can live more fully in the moment. When behavior symptoms are treated, loved ones and caregivers do not need to be on edge, accused of being jailers, or always wondering when the next outburst or crisis will hit. Aggression, anger, and paranoia decrease. Patients can enjoy their friends and family.
It is also worth noting that many facilities will refuse admission or evict elders with difficult behaviors. I have heard it said that some elders with aggression “will just need to be put in mental institutions.” Most often, behaviors can be addressed with behavioral and medical interventions to allow a person with dementia to stay at a more homelike facility, closer to family. Usually, effective treatment involves treating pain adequately and stopping the use of drugs that make the behavior worse, though it may take months to slowly remove the offending medications.
The treatment of pain has become more controversial as well. The Centers for Disease Control and Prevention (CDC) has advised that narcotics should not be used in patients with chronic pain. I trained at an inner-city public hospital and cared for my share of drug- or alcohol-addicted people. I have been threatened over medications. But that was a different population from elders with severe, bone-on-bone arthritis or spinal stenosis. As with other areas of medication use, we use the most simple solution first—a tablet of long-acting acetaminophen (Tylenol) two to three times a day, every day. (As with all medications, check with your loved one’s doctor since liver damage can sometimes—but rarely—be a contraindication to its use.) Yes, Tylenol should be given every day for someone with known pain and arthritis. I like to say, “Dementia does not cure arthritis.”
Someone who had pain before dementia likely still has it but may not be able to locate the source of the pain and may just become more irritable. Caregivers and nurses are more likely to reach for the Ativan or Xanax for the irritability than the Tylenol for the pain causing the agitation, but I suggest you try the Tylenol first.
I’m always up front with families about the risks of using strong psychoactive medications. When families have tried every physical, social, and medical treatment available and still their elder remains extremely hostile, paranoid, or delusional, they often decide to take the chance. Here are examples from my practice.
• Maggie’s husband, Joe, started having symptoms of early onset dementia in his early sixties. At six foot, four inches and 240 pounds, Joe was extremely strong. When Maggie finally had to place him in a dementia unit, he was extremely agitated. He would throw a bundle of his clothes over the facility fence, then try to scale the wall. He grew so upset and so violent that Maggie had to hire a one-on-one caregiver just to watch him.
After several weeks adjusting to a new medication regimen that included antipsychotics, Joe stabilized. He required 3,000 mg of valproic acid (Depakote) and 800 mg of quetiapine fumerate (Seroquel). He was not sedated, but he was not as aggressive, and he could finally be engaged in activities for a short time. After several stable months, the doses were decreased to the point that he was somewhat aggressive. That showed what dose he required.
Then we increased the dose slightly. This increase lead to calm, engaged days. His wife and son could visit without him charging the door when they left.
“I hate to think what would have happened if we had not been able to get his behavior under control,” Maggie told me. “He would have had to have been locked up, restrained, and heavily sedated. It would have been a very sad ending.”
• Barry’s mother, in her eighties, became so out of control that even several grown men could not subdue her. When she came to see me, she was on a cocktail of medications, but they didn’t seem to help. With some trial and error, we were able to find a combination of drugs that calmed her down.
“There is no way my mother could have been treated without these meds,” Barry told me. “My mother wasn’t doing well on the normal drugs that a regular physician who doesn’t deal with elders prescribed.”
• Kyle’s mother started to have memory problems in her early sixties. She fought her family and her medical team at every turn. Her dementia pushed her into a state of constant fear. She saw her own reflection in the mirror and thought someone was stalking her. She took a big metal spoon and broke every reflective surface in her room. She stabbed a caregiver with a pen. She broke the furniture. She overturned her bed. She frightened the other residents and the caregivers. She had been treated with increasing doses of Ativan and quetiapine fumerate (Seroquel). The Ativan was very slowly tapered, and the Seroquel was replaced with a small dose of olanzapine (Zyprexa) and valproic acid (Depakote).
Once we changed her medications, she wanted to see her children and grandchildren. Kyle told me, “She thought we were the enemy, but she didn’t realize we were trying to help her. With the right medication, she became calm, not sedated, and wasn’t afraid anymore.”
• Andre, in his eighties, was horrified when his wife of many decades, Emily, became so violent that she had to be taken from her dementia unit in handcuffs, escorted by police officers, because she was a danger to herself and to others.
“We had tried all the standard medications, the Alzheimer’s medications like Aricept and Namenda, but they didn’t seem to be helping much,” Andre told me. “Your way of handling her case has given her back to me. I lost her. You helped her to overcome some things, not completely of course, but enough so that I could visit her.” Emily did not tolerate any antipsychotic medications. However, a small dose of methadone for her severe hip pain and some gabapentin (Neurontin), which also helps with muscle, skeletal, and nerve pain, and a little valproic acid (Depakote) helped to allow her to stay in the facility near her husband without being sedated or in pain.
Finding the Right Combination
Treating these symptoms requires a measure of trial and error, which is typical in other fields of medicine as well. I emphasize to the families of my patients that there is no way to be absolutely sure of finding the right combination of activities, behavioral intervention, pain management, and medications that will lead to calm engagement without side effects. But we can’t reach that desired balance if we don’t try.
Some of these methods involve the prescription of drugs for uses other than those approved by the FDA. This is quite common in medicine. For instance, doctors may use gabapentin (Neruontin) for the treatment of joint pain or anxiety, while it is only officially approved for treating shingles pain. Older, less-expensive medications such as Neurontin are not cost-effective for any company to test and market. That said, not all off-label uses of medications are beneficial to patients. Ideally, doctors would only use FDA-APPROVED medications. But in cases where no medications are approved and the studies do not point to a reliable treatment, educated estimations and close observation have served patients well.
Informed consent is crucial. Each family should know of the risks, benefits, and alternatives of any medication and should be aware if a medication is not FDA approved. The person starting any medication should be monitored closely, and if there is any new symptom, the medication may need to be stopped to determine if it is the source of that symptom before more medications are added to treat the new symptom.
This is a common scenario, particularly with Parkinson’s medications such as Sinemet (carbidopa /levodopa), which increases dopamine to allow better movement. However, it also is more likely to lead to psychosis, paranoia, delusions, and aggression. I have seen Parkinson’s treated with risperidone (Risperdal), an antipsychotic that decreases dopamine, but makes Parkinson’s stiffness worse. And so it goes, with increasing doses and other medications, trying to find the right balance. The right answer is to stop the medications that make Parkinson’s disease worse. In my opinion, risperidone should never be used with Parkinson’s. Any Parkinson’s medications that have adverse side effects should be tapered to the point that the elder cannot function as well, and then increased a little more to allow function. Medications should be reassessed periodically.
Doctors prefer to stick to “evidence-based” medicine, treatments that have been proven effective by studies. The problem is that there are few definitive studies of the behavioral symptoms of dementia patients. As practitioners, we can easily see if behavior improves. But it remains difficult to quantify that improvement in an academically rigorous way. In addition, as previously noted, the use of lorazepam (Ativan) or donepezil (Aricept) may affect behavior, and some studies use them while testing the new medication. Other studies withdraw all psychoactive medications. Unfortunately, as we discussed earlier, rapid withdrawal of the benzodiazepines (Xanax, Ativan, Klonopin) can lead to withdrawal agitation or delirium, which is confused for agitation of dementia.
Definitive direction from studies is still years away. Yet, so many of our loved ones need help today. And the number of those living with dementia increases each year. Ensuring comfort, addressing needs, and providing meaningful engagement are always the go-to options. However, when they fail, I have seen these medicines make a huge difference in the lives of my patients, allowing them more comfort and bringing peace to their families. I have also seen these medications abused, used to sedate, without a lot of thought about the underlying cause of the behavior. To be clear, it is never acceptable to leave an elder sedated. Medications must be reduced and adjusted.
Medical practitioners, families, and caregivers should closely monitor patients who use these medications. Even if a person with dementia remains calm, the team needs to remain alert to possible problems: constipation, decreased interest in food and fluids, poor balance. The goal should be to use the gentlest medications that work and to reduce the dose when possible. I find that after a few months with stable behavior, many people can reduce the amount of behavior medications that they take.
Adjust, and Then Adjust Again
A middle-aged couple struggled with the husband’s mother, Pam. In her eighties, the woman’s body was strong, but her mind had become clouded. After a reaction to a seizure medication, she became uncontrollable.
One night, she became so combative that six firefighters, three policemen, three paramedics, the facility staff, and her family all converged on her room to calm her. They failed. (Having so many people in a room can make matters worse, but this occurred before I met her. I would advocate for a calm, gentle presence of one or two people if possible.) Eventually, Pam became so disruptive that she was forced to leave the facility.
The family was prosperous and tried to provide the best care available. Pam seemed physically comfortable; she had access to good food and to activities that might engage her. She had patient, trained caregivers. Yet nothing worked. The family didn’t know what more they could do.
When I saw Pam, I knew it was going to be a trial-and-error process. She could no longer communicate, so she couldn’t tell me what she was feeling. Was she agitated because she was angry and paranoid? Or might she be agitated because something was annoying her?
As possible medical and physical irritants were ruled out, I started adjusting her medications. She had a history of arthritis, so I first tried the long-acting acetaminophen (Tylenol), one tablet three times a day. Then a small dose (100 mg or less) of Neurontin, once at night, then twice a day. She was still aggressive to her caregivers, refusing needed personal care, despite the caregivers being patient and trying different approaches. Pam did not like help in the bathroom, but she could not clean herself and was at risk of skin breakdown. In similar cases, I usually begin with a low dose of an antipsychotic like quetiapine fumerate (Seroquel), then wait to see if the patient responds. If the response is not good, I try another. It took a few months, but eventually I hit on a complicated regimen that stabilized Pam.
Now, she functions well enough to live in a board-and-care home a few blocks from her son. She can go on short trips with her son and daughter-in-law. She can go out to lunch. She can go to the movies. She is living in the moment, and living well. It just took time, some patience, and the right combination of medicines.
All drugs have pluses and minuses. While it’s important for families to know medication basics, be sure to discuss these options in detail with your doctor. Remember that as a disease progresses, it usually makes sense to taper down most medications. This is especially true if someone is hospitalized; often when elders are sick, they become more sedated from the medications they had been stable on previously. Again, with any sedation, the sedating medications need to be reduced and possibly stopped.
The Case Against Tranquilizers
Would you give Grandma a shot of whiskey to keep her from calling out? Tranquilizers work the same way alcohol works. In fact, they’re used to help wean patients from alcohol use. Doctors soften the withdrawal symptoms with drugs like lorazepam (Ativan), alprazolam (Xanax), or clonazepam (Klonopin).
Tranquilizers, like alcohol, can’t be stopped suddenly, cold turkey. If a person with dementia takes a tranquilizer for more than a few days, suddenly discontinuing the medication may cause agitation, even delirium. In people with dementia, medical professionals often attribute this distress to the dementia itself or to a medical issue like an undiagnosed bladder infection. Overtreatment of presumed bladder infections is a whole other problem in care of elders. In my experience, in most cases the tranquilizers are to blame.
My first rule for coping with the behavioral symptoms of dementia is this: Don’t prescribe any medication that’s likely to make the patient less inhibited. Many anti-anxiety drugs do just that, damping self-control. Tranquilizers act very much like a couple shots of booze.
In my opinion, we are far too liberal with tranquilizers for elders.
The tranquilizer Ativan is prescribed to millions and is completely accepted by the medical orthodoxy. Nearly one-third of the elders taking Ativan have long-term prescriptions, mostly given by primary-care doctors.
Nearly 5 percent of Americans take sedating tranquilizers in the Ativan or Xanax family, according to a study in the journal JAMA Psychiatry. That’s about 16 million Americans on tranquilizers.
Elders and women are three times more likely to get tranquilizer prescriptions, especially if they suffer from insomnia or anxiety.
Yet tranquilizers are far from risk-free. Ativan use increases the risk of falls, and thus fractures. It can cause addiction, increased confusion, and aggression. All these risks are greater for older people.
All too often, when someone with dementia suffers with insomnia, they are treated with tranquilizers such as zolpidem tartrate (Ambien), triazolam (Halcion), temazepam (Restoril), lorazepam (Ativan), alprazolam (Xanax), or clonazepam (Klonopin). These drugs have been shown to result in decreased brain function. Tranquilizers may lead to oversedation, increasing the danger of falls. If they are used for a few months and the person develops a tolerance, agitation may then increase. Often, the dose is increased and the cycle begins again. Or the withdrawal delirium looks like worsening dementia. These drugs may even make patients psychotic and less socially inhibited, like someone bruising for a barroom brawl.
Tranquilizers have their place for emergencies. If the elder becomes violent, a tranquilizer may be the only solution. Short-term use in a hospital may sometimes make sense so that a needed test or procedure can be done.
But why is this person in the hospital? It’s very common for elders with dementia to be afraid of hospitalization. I sat in the ER with Stan, an eighty-four-year-old man I had helped bring in after being called to his home and realizing he was delirious. As I sat there, the tech said the cursory, “We need to draw blood and do an EKG,” and he started to take Stan’s arm, tie the tourniquet on, and poke him. Stan pulled away, and the tech held harder. Then the EKG monitor leads were put on without a word. The tech left, and Stan took them off.
People with dementia don’t understand the strange routines of a hospital, the hustle-bustle, the scary machines, and unfamiliar sounds. Are we improving quality of life for dementia patients by hospitalizing them? Or are we distressing them and exposing them to drug-resistant bacteria that they wouldn’t encounter at home? If patients pull out IV lines and fight with the hospital staff members, they’re likely to be tied down and sedated. Is that the goal that we set for care?
Stan died three weeks later in the hospital. He had a bladder infection, which was treated, but the doctor would not release him unless he could sit up calmly on the edge of the bed. He fought the care and was restrained at his wrists and with liberal doses of haloperidol (Haldol). He was stuck in bed the whole time and then aspirated. I had lobbied to get him home with two sets of caregivers, but I did not have the last word.
Many of my patients do not tolerate hospital care well. I provide almost all care at their homes. Much-needed care can be supported at home, from podiatrists, nurses, even dentists. X-rays, blood samples, even infusions can be done at home. And when the end is near, hospice care can also take place at home, where elders feel comfortable and safe.
When All Else Fails
The director of the dementia unit had reached the end of her rope. She had trained all of her staff members in the correct techniques for handling aggressive patients. Her caregivers knew how to go slow, how to be friendly. Over decades in the field, this director had earned a reputation for compassionately handling even the toughest patients. Yet nothing worked with one eighty-year-old man. No matter what the staff members did, this patient continued to slam aides and nurses against the walls. The director contacted the man’s doctor, asking for help.
The doctor, who cited his training in caring for dementia patients, sent the unit director a note. In it, he said that medications were not indicated in the treatment of dementia. The staff members on her unit, he wrote, just needed to love the resident.
The next day, the man slammed another resident, an eighty-four-year-old woman, against the wall. He had to be sent to the hospital because he was a danger to others.
Sometimes love isn’t enough.
Better Alternatives
Use the following sections for reference as you design a strategy with your doctor.
The challenge is this: Everyone’s body chemistry is slightly different. Everyone has a different situation and a different history. Elders are very different from one another in their response to medications. Two people may look the same. They may have the same level of dementia and have similar symptoms. Yet they may react very differently to the same drug. If you’ve seen one person with dementia, then you’ve seen one person with dementia.
The key is to know where to start and then be available to hear feedback and adjust strategy. Only then can behavioral symptoms be eased so that life “in the moment” can be pleasant.
Trial And Error to Find the Sweet Spot
Mary is eighty-four years old and recently got kicked out of her nursing facility. She yells, refuses to be moved, and is somewhat sedated with Ativan and a little Haldol. Her daughters report that she has been a difficult woman for a long time.
Upon further discussion, they report she has had spinal stenosis for more than eight years. As her dementia worsened over the previous two years, she has begun to have problems walking.
I stop the Haldol and taper down the Ativan. Mary remains irritable and refuses care. I try gabapentin (Neurontin) and pregabalin (Lyrica), but they do not work to relieve Mary’s pain or mood. I try mirtazapine (Remeron), but it does not calm agitation,
After discussing the risks with her family (2 percent increased stroke risk, 1 percent increased sudden death risk), I prescribe one-quarter tablet of methadone at night.
Mary has less pain, is allowing care, and after increasing to one-quarter tablet twice a day, she has the other psych meds tapered down and enjoys her days.
Antipsychotics
All antipsychotics increase the risk of stroke and sudden death, as I’ve noted before. Obviously, then, they shouldn’t be used for behavior that is merely annoying, such as restlessness, simple insomnia, or repetitive questions or actions. Again, behavioral interventions are always first; engagement, comfort, addressing needs. Several antidepressants—citalopram (Celexa), mirtazapine (Remeron) or sertraline (Zoloft)—make much better first choices in cases of anxiety or aggression that haven’t responded to other interventions.
Antipsychotic medications are the meds to use if a patient is severely paranoid or delusional. If the patient has extreme anxiety brought on by delusions, antipsychotics can be helpful as well. Each medication has a different effect. Risperidone (Risperdal) is less sedating but rarely causes more stiffness or restlessness (akathisia, which is Greek for “inability to sit”), and quetiapine (Seroquel) is more sedating and rarely causes more confusion, but it may be less effective at treating paranoia.
If one fails, another may work. As previously discussed, they all have a 2 percent increased stroke risk, a 1 percent increased sudden death risk, and all can affect walking. Occasionally, the drugs may interfere with swallowing and may lead to further decline. Try to use the minimum amount necessary for the shortest time possible.
Here are the antipsychotic medications most frequently used.
• Risperidone (Risperdal) can help reduce paranoia and delusions. However, it may sedate an elder at higher doses or cause restlessness or akathisia. Because it may cause stiffening or trouble walking, particularly in those with Parkinson’s disease (which causes those same problems), those patients should always be given something else, often quetiapine (Seroquel) or clozapine (Clozaril). In some cases, risperidone has been associated with what are called “extrapyramidal symptoms,” strange movements or twitches of the mouth or body, another reason it should be avoided in patients with Parkinson’s disease.
• Haloperidol (Haldol), an older medication, may alleviate delusions, hallucinations, and paranoia, but it causes extrapyramidal symptoms in 30 percent of those treated, also restlessness, walking problems, and general stiffness. This medication should also be avoided in patients with Parkinson’s disease; it is dangerous in that the person can become immobile. This drug stays in body fat for some time, so effects often linger even after the drug is discontinued.
• Aripiprazole (Abilify) may decrease hallucinations and agitation without sedating patients. But because of the way the drug works, some patients may actually experience more agitation while taking it. The only way to know is to try it. However, we do not use this antipsychotic often as other alternatives are better tolerated.
• Ziprasidone (Geodon) may also be used to treat hallucinations and delusions. There are some reports that it may not be as effective as the other antipsychotics above, but sometimes it may work when others are not tolerated.
• Quetiapine (Seroquel) may help moderate paranoia, delusions, and hallucinations, but is less potent than Risperdal (risperidone). It is less likely to cause side effects like involuntary movements or stiffness. Because of this, Seroquel remains a better option for those suffering from Parkinson’s or Lewy body dementia. Side effects can include sedation and lower blood pressure or, at times, more agitation because of the drug’s anticholinergic effects.
• Olanzapine (Zyprexa) may also treat paranoia and delusions. However, it can also increase levels of blood glucose (dangerous for diabetics) or lipids (dangerous for heart patients). However, it may be helpful when Risperdal and Seroquel haven’t worked.
• Clozapine (Clozaril) is a drug typically used to treat schizophrenia and bipolar disorder. It can be difficult to use: for each weekly supply, a blood test is required to confirm that white blood cell counts remain normal. However, this drug can help some patients, especially those with Parkinson’s dementia, who haven’t responded to other medications.
Sometimes You Need to Change the Situation and the Meds
Larry, an eighty-year-old man, went into the hospital with mild dementia. As he was being treated for a stroke, physicians had to insert a catheter to drain his urine. He didn’t understand why it was there, and he kept trying to pull it out. The hospital staff had tied him down to keep him from doing this. He had become completely incoherent, delirious, not eating or drinking well, and spent all of his time tied to the bed.
When he left the hospital, his dementia had become many times worse, and he was incredibly upset about the catheter. Several times, Larry would pull out his catheter. This sometimes resulted in severe bleeding and a return trip to the hospital. At times the bleeding became so bad Larry needed a blood transfusion. It became a vicious cycle. The family begged the doctors to remove the catheter, but the medical team told them it wasn’t possible because the patient was too ill to undergo general anesthesia. They prescribed sedatives and antipsychotic medications to help him cope.
When I first saw Larry, he was completely delirious. He didn’t know where he was. He didn’t know what was happening. His family was desperate.
I helped the family to schedule tests that could tell us if a simple procedure (a laser TURP) might make his catheter unnecessary. We found a surgeon willing to do this procedure with spinal anesthetic, rather than general anesthesia. I tapered down Larry’s tranquilizers and prescribed a small dose of Risperdal. He was back in street clothes just a few days after his surgery, happier, more alert.
In this case, a combination of addressing the catheter problem, moving him out of the hospital where they would not take definitive action, and changing his medicines helped this man to get out of crisis.
“He’s my sweet Dad again,” his daughter told me
Sometimes Only Antipsychotics Work
Margo, an eighty-six-year-old woman, started to decline quickly after her husband died. She moved in with her daughter and son-in-law, who had run a senior center for decades. Even with the couple’s experience in the field, the family struggled: One night, Margo snuck out of the house at 1:30 A.M. with a bag full of potatoes, costume jewelry, and a remote control. Another time, with two people watching her, she still managed to slip out of the house. She would become agitated, then aggressive, then delirious. She refused to eat. She stayed up all night and then slept all day.
The time came when Margo had to go to the hospital for treatment of a bladder infection. The staff there heavily sedated her to keep her from becoming too disruptive. She was released to an excellent dementia care facility, but even there, she struggled with constant agitation. She tried to escape, fell, and banged her nose. Her family felt confused and upset.
I used a small dose of antipsychotic medication and tapered down the tranquilizers. Within seventy-two hours, there was a turnaround. Her daughter told me she was back to where she had been six or seven years before.
Once Margo stabilized, we tapered down the antipsychotic drugs. She now takes very few meds and has become the social darling on her hall at the dementia facility.
Antidepressants
Understandably, those suffering from dementia may show signs of depression. They may be irritable and edgy. They may not be able to explain their bad mood. They may eat and sleep too much or too little. Early symptoms of dementia may first be diagnosed as depression.
It’s important to first address the depression by getting the elder engaged. Sometimes the first episode of late-life depression can be treated with a simple change of schedule or situation: a good day program to end the elder’s isolation or the removal of stressors such as an alcoholic, abusive grandson who lives with the person. Or if behavioral interventions do not work, perhaps a prescription for the appropriate antidepressant will work. Not all antidepressants are alike; some may make the elder more agitated, resulting in insomnia and confusion. It’s crucial to find a physician who is aware of the challenges of treating older individuals because medications may have more adverse effects on older people than on younger patients.
Just a few decades ago, treatment for depression was limited. Luckily, we live in an age where there are many drug options for easing depression Most of these medicines work by affecting the supply of or the absorption of key brain chemicals.
The largest group of the newer antidepressants are selective serotonin reuptake inhibitors (SSRIs). These drugs work on serotonin, a chemical that helps carry messages in the brain. The drugs block nerve cells from absorbing serotonin, thus increasing the supply of this important nerve transmitter. SSRIs may cause stomach upset or diarrhea and may decrease the sodium levels necessary for health. They may affect walking. For people with dementia, older medications like sertraline (Zoloft) or mirtazapine (Remeron) often result in better outcomes than newer, more complicated drugs. Other drugs affect the supply of norepinephrine, a brain chemical that helps control attention, and dopamine, a chemical key to muscle control and the ability to feel pleasure.
Here are some of the most common antidepressants.
• Fluoxetine (Prozac) is the best known and the oldest of the newer SSRIs. It works well in younger adults, but it’s not such a good choice for elders. It is very long acting and is likely to dampen appetite, exacerbate insomnia, and lead to irritability and anxiety.
• Paroxetine (Paxil), another SSRI, works for depression, anxiety, and obsessive-compulsive disorder. However, it can be very sedating. It also interferes with choline (is an anticholinergic), resulting in confusion, constipation, dry mouth, and urination difficulties for men. It’s likely to exacerbate behavioral problems and can be difficult to discontinue. It’s usually best to taper it off very gradually, and it may be better to give it at night and lower the dose if withdrawal symptoms prove difficult. I do not prescribe this medication for older individuals.
• Citalopram (Celexa) selectively inhibits the absorption of serotonin. Since its patent has expired, it is very affordable. Some studies have concluded that citalopram decreases agitation, but it doesn’t work for all patients. The side effects (as with all SSRIs) include a possible decrease in sodium, stomach upset, and diarrhea. This drug often causes sedation, so it makes sense to take it at night. Still, it’s a better choice than a tranquilizer like lorazepam (Ativan), unless a patient needs to be sedated or restrained right away to treat dangerous behavior or is unresponsive to other interventions. Beware that SSRIs, particularly citalopram, can increase heart rate and that in combination with antipsychotics, antibiotics such as ciprofloxacin (Cipro), and certain other medications, SSRIs can lead to serious heart arrythmias.
• Escitalopram (Lexapro) is functionally similar to citalopram. This medication can also be sedating, so it’s better given in the evening. Its side effects are similar to those of citalopram. Some believe this is a more effective medication, but results vary.
• Sertraline (Zoloft) also selectively blocks serotonin reuptake. It’s less sedating than related formulations, and it can help those struggling with sleepiness. It is also good for those who may be eating too much, which is sometimes a symptom of dementia. On the flip side, it may “rev up” some patients, leading to insomnia, irritability, stomach upset, diarrhea, and decreased appetite.
• Mirtazapine (Remeron) works mainly on the receptors for serotonin and norepinephrine, another neurotransmitter. It’s particularly good for patients suffering from anxiety, poor appetite, and insomnia. In the older patient (those who are over eighty years old or frail), it may cause more walking and balance problems than SSRIs. However, if the patient is no longer walking, this isn’t an issue. Occasionally, this medicine may cause liver inflammation. Recent studies show it is not as affective for severe agitation.
• Venlafaxine (Effexor) improves mood by blocking the reuptake of both serotonin and norepinephrine. It can cause heart stimulation and blood pressure elevation, and its side effects—insomnia or irritability—may worsen in elders. However, it may help patients for whom an SSRI isn’t enough, and it can be more energizing than other drugs. One neurologist calls it “rocket fuel.” It should only be prescribed in consultation with a trained geriatrician or geriatric psychiatrist. There is also a risk of withdrawal syndrome if the drug is discontinued, so it should be tapered slowly.
• Duloxetine (Cymbalta) also blocks the reuptake of both serotonin and norepinephrine. Reports of patient experiences are mixed. This seems to be the flavor of the year, touted as a treatment for pain. However, my patients with pain have not had significant relief, and I spend much of my time tapering it down or discontinuing it because it can cause more agitation and poor sleep. It may also cause headache, dizziness, insomnia, nausea, and constipation, among other side effects. It can be complicated to use because of side effects and withdrawal issues.
• Bupropion (Wellbutrin) may help those who are eating too much or feeling more lethargic or apathetic. This drug may energize patients, reduce appetite, and cause insomnia. It shouldn’t be used in those at higher risk for seizures.
In some cases, elders taking antidepressants to treat agitation may instead become more agitated and restless, and they may suffer more insomnia and emotional unpredictability. This may be a side effect of the medication or the symptoms of bipolar disorder. One of my patients, Ralph, had appeared depressed with his hip replacement, so he had been given Celexa. One day Ralph disappeared and returned with a new car! Our psychiatrist helped stabilize his previously undiagnosed bipolar mood disorder with valproic acid (Depakote), and the car was returned. A psychiatrist should be consulted in these complicated situations.
Radical Treatment, Radical Improvement
Bonnie was an eighty-six-year-old woman who was withdrawn, apathetic, and had been diagnosed with advanced dementia. In the past, she had suffered an episode of severe depression and had responded well to electroconvulsive therapy (ECT), once known as shock treatment, to trigger changes in brain chemistry. We tried this treatment again. The woman did so well after ECT that she was able to move from a dementia unit to a structured, assisted-living facility. Yes, that is an unusual story, but ECT and other treatments should be thought of in select cases.
Mood-Stabilizing Medications
Some elders may become quick to anger or have serious mood swings that don’t respond well enough to multiple trials of various antidepressants. In some cases, there’s simply not time to wait three months or more for symptoms to change when a patient enters another stage of dementia. Another group of drugs called mood stabilizers may yield results in these situations.
Prescribing these drugs for dementia patients remains controversial. These medications calm nerve function. When first introduced, they were used to treat seizures. Later, physicians realized that they could be useful in treating schizophrenia and bipolar disorder, once called manic depression. They help with mood swings, insomnia, accelerated or frenzied speech, and grandiosity (“I just talked that over with the President” or “I’m going to buy an airplane tomorrow”).
The FDA has not approved these meds for use in dementia patients, yet they are prescribed off-label. A discussion of the risks and the benefits is essential in order to give informed consent. If they are used, it is best to start at low doses.
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Valproic acid (Depakote) can be very tricky to use with elders who are frail. However, for a patient who is climbing walls, trying to escape, and physically lashing out at family and staff, someone who is quick to anger, this drug can ratchet back the aggression where other medications have failed. There are risks in using this drug. The biggest risk is that it can affect balance for frail elders who are walking. Rarely, it can cause liver inflammation or lower blood cell counts. It should be administered at the lowest dose possible for the shortest time. I’ve found that it’s best to look at the patient’s behavior to determine quantity (usually starting with 125 mg once in the evening, or less). This is a key point: to use only the minimum dose, rather than follow a conventional therapeutic level that is standard in treating bipolar disorder, which often results in oversedation (and the resultant increased risk of falls, aspiration, blood clots, pressure ulcers, dehydration, and sleep cycle disruption).
It may irritate the stomach. It can never be crushed, but comes in sprinkles and liquid form. Both physicians and caregivers need to monitor the patient carefully. When the elder is doing better, that’s the time to start tapering off.
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Gabapentin (Neurontin) was originally developed to treat seizures and is FDA approved for the treatment of shingles pain. However, it has been used off-label to treat the nerve degeneration known as peripheral neuropathy, joint pain, and anxiety. When the nerves that carry messages to and from the brain and spinal cord don’t fire correctly, the result can feel like burning pain and numbness
While peripheral neuropathy can happen to anyone, I have treated many patients in long-term care who have abused narcotics or tranquilizers. I found that gabapentin avoided addiction issues and helped calm a wide variety of patients: one man with post-traumatic stress disorder who had to stay in the hospital to receive IV antibiotics for six weeks, another who suffered from terrible sciatica, another who had spinal pain.
The most possible side effects of gabapentin include; sedation, rare confusion, constipation, dry mouth. Most elders tolerate this drug pretty well, and it has fewer serious effects than long-term Xanax or lorazepam (Ativan).
• A similar, but more expensive medication,
pregabalin (Lyrica), is FDA approved for treatment of fibromyalgia. It may be more effective for nerve pain and is less sedating than gabapentin, but again, some people may become more confused.
Likewise, I have found that gabapentin can effectively calm some people with dementia, where behavioral interventions are not enough and when another doctor might reach for the Ativan. It may decrease anger and anxiety for some; for others, it may do little but make them sleepy.
• Carbamazepine (Tegretol) is used by some, but it has not been shown to relieve symptoms in most patients and leads to serious sedation. This drug also has many side effects, including liver inflammation and decreased cell counts.
Daughter Held Hostage
In her middle age, Penny leaves her home in New York to help care for her mother, Kathy, in Detroit. Kathy can’t take care of herself, but she won’t accept any caregiver except for her daughter. Kathy’s needs swallow up the daughter’s life. Kathy grows increasingly paranoid and aggressive, but she will not allow anyone else to help her at home. This goes on for years.
Several times, when the mother is hospitalized, Penny asks to have her placed in a care facility. Penny has reached the end of her rope. She can’t go on taking care of her mother without help, but her mother vetoes outside caregivers. Yet each time Penny asks, the social workers at the hospital just send the mother home.
The first step to softening the mother’s paranoia and anger employed ice cream—with a small dose of valproic acid (Depakote) and olanzapine (Zyprexa) mixed into it because the mother wouldn’t take pills whole. Most facilities are reluctant to take on disruptive elders, but with medication, Kathy’s behavior calmed down, and it became possible to place her in a facility.
Five years on, the mother is smiling more, takes only a small dose of Zyprexa (which when stopped leads her to refuse all care and medications), and is engaging in activities with other residents. Penny was able to reclaim her life, and she is relieved knowing that her mother is well cared for and enjoying her days.