“Once, my mom and I disabled his car so that he couldn’t drive it, and he soon realized what we’d done,” Powell, 50, says. “He rushed across the living room and literally growled at me like a bear in the most frightful way. Thirty seconds later, he didn’t know he’d done it, and everything was fine.”
The “bear incident” is just one of many that eventually caused Powell and his family to put their 86-year-old father into a nursing home. “Once, the doctors noticed that mom’s eardrums were both ruptured, and they realized dad probably slapped her upside the head and cupped her ears.”
Unfortunately, Alzheimer’s aggression is fairly common among Alzheimer’s patients. There’s cursing, hitting, grabbing, kicking, pushing, throwing things, scratching, screaming, biting, and making strange noises. More than 4.5 million Americans are diagnosed with Alzheimer’s disease every year, and up to half can show some of these behaviors. The number of total Alzheimer’s sufferers is projected to balloon to 16 million by 2050.
Alzheimer’s aggression is one of the main reasons most people put their parents in nursing homes. Fortunately, new medications and coping methods can help, though agitation and aggression are still a misunderstood aspect of Alzheimer’s.
“The public thinks Alzheimer’s is a memory disease,” says Dr. Ramzi Hajjar, a geriatrician at St. Louis University in Missouri. “But, in fact, there are lots of neuropsychiatric symptoms. Alzheimer’s patients often develop delusions. They think their family is stealing things from them, for example. And they get very aggressive and irritable towards their spouse.”
He stresses that families need to always remember that Alzheimer’s aggression really has nothing to do with them. “The child always wants to take it personally, which causes unnecessary anxiety,” Hajjar says.
No one knows for sure why some Alzheimer’s patients lash out and others don’t, but one University of Kansas study showed that recognition was the strongest predictor. Forgetting what something was, or what was inside something, was the most common cause of aggressive behavior.
Other studies have shown that Alzheimer’s patients sometimes act out because of side effects like headaches, constipation, and nausea from some anti-anxiety medications such as Xanax® (alprazolam), Ativan® (lorazepam), and BuSpar® (buspirone). Patients who can’t communicate often express their discomfort from those symptoms by becoming even more agitated and combative.
The first step in managing difficult behavior in the care for Alzheimer’s patients is to find out where it’s coming from and what it means. Does the agitation or combativeness mean the patient is hungry or thirsty or scared? Is it a reaction to something threatening or uncomfortable in their environment?
“I’ve seen people strike out because of their distress,” says Dr. Ruth Tappen, director of the Louis and Anne Green Memory and Wellness Center at Florida Atlantic University in Boca Raton, Florida. “Once, a Holocaust victim would have his memories return at night, and he’d get aggressive, yelling and carrying on at his wife; twice he even brandished a knife. He was defending himself from long-gone dangers.”
Other times, agitation starts when patients get frustrated with themselves, as simple memories start slipping away. They might forget where they put the keys, or what time their dinner appointment is that night. After asking a few times, everyone around them becomes irritated, and they get agitated.
But it’s sometimes hard to know exactly why some lash out. That’s what author Jacqueline Marcell learned, the hard way.
Marcell, who wrote the book “Elder Rage” after an entire year of experiencing her father’s Alzheimer’s aggression, says she grew to learn what situations would trigger her dad’s outbursts. But first, it took a year of doctor visits to even diagnose him correctly with Alzheimer’s.
Using medications to manage aggressive behaviors in dementia patients is considered very controversial. Doctors have tried using traditional (first-generation) antipsychotic drugs such as Mellaril® (thioridazine) and Haldol® (haloperidol), but their effectiveness was limited and carried some unpleasant side effects such as vomiting and nausea. Atypical,” or second generation, antipsychotics (such as Seroquel® and Risperdal®) have been found to be somewhat more effective in reducing behavioral problems, but they havenot been approved for use in dementia patients by the FDA. In fact, the FDA has issued a warning in April, 2005 regarding “atypical” (second generation) antipsychotics in dementia patients. The warning states”that older patients treated with atypical antipsychotics for dementia had a higher chance for death than patients who did not take the medicine.” Because this warning does not actually prevent doctors from legally prescribing these medications for this type of “off-label” use, it is extremely important that families understand the potential risks involved and proceed with caution.
Fortunately, drugs aren’t the only answer. There are other ways that you can improve your situation. The following are some techniques and strategies that have helped many people successfully care for Alzheimer’s patients and manage the Alzheimer’s aggression:
Place signs on rooms to say what they’re for, put name tags on guests when they visit, and put labels on common items, like clocks and telephones. Tape explanatory phrases on doors or cupboards to tell them what’s inside.
Once you identify situations that frequently cause upset, you can work toward achieving gentle transitions. If your loved one doesn’t like leaving the house, for example, you can take the process step by step. The actions of bringing current activities to a natural close, standing up, putting on shoes and a coat, etc, can all be introduced sequentially while you distract the person with small talk.
“When my mom-who also had Alzheimer’s-left her watch in the sugar bowl, I didn’t accuse her,” Marcell says. “Instead, I said, ‘Mom, why is there a watch in the sugar bowl?’ She’d say, ‘I don’t know,’ and I’d say, ‘How do you think it got there?’ Using logic helped her a lot.”
Tell them it’s OK to be frustrated, or sad, or lonely.
Studies consistently prove this works. “Always smile, and look kind and gentle,” Drea says. “Your face is an important signal that everything is alright.”
This will help minimize the number of unexpected and stressful events.
If distraction and support do not work. If the situation is threatening, make sure he is unlikely to harm himself and stay clear until he calms down.
“Anticipating that there will be ups and downs, and maintaining patience, compassion, and a sense of humor will help you cope more effectively with difficult behavior,” says Catherine Johnson, PhD, a psychologist who specializes in dementia at St. Joseph’s Hospital in St. Paul, Minnesota. “It’s important to remember that it’s the disease, not the person, causing the behavior.”
Sometimes singing an old favorite song can get someone to calm down instantly. The American Academy of Neurology recommends using music to reduce many problem behaviors. They say it’s most effective during meal or bath time. If you don’t sing, play a song from their old collection.
Learn how to debrief after an incident and identify what caused it. Ask yourself, “‘What can I do differently the next time, to avoid the aggressive reaction?'” Johnson says. “Learn to resolve the emotional reaction you as a caregiver had. Then, you can move forward effectively. Take care of yourself.”
Finding support groups and counselors to help you cope is one of the most important things you can do. Not only can you help yourself deal with the difficult times, some of the people you meet may have some useful advice on managing the aggression. Some good places to begin include The Alzheimer’s Association and the Alzheimer’s Disease Education and Referral Center (ADEAR).
Perhaps the most comforting thing about Alzheimer’s aggression is that, for many patients, it’s a phase that will pass. While the dementia itself is irreversible and will continue to worsen, for many patients the aggressive behaviors do seem to subside over time. Because this is a phase that can last for years, however, trying to wait it out without dealing with the behaviors is usually not an effective strategy for coping with the problem.
For some, the challenges of handling Alzheimer’s aggression can become too great, and they may decide that they must place their loved one in a skilled nursing facility. Although this is never an easy decision, those like Charlie Powell know they have done the best they can, and that relying on the professional care available in a nursing home is the smartest choice.
“I know my dad is getting the best possible care now,” Powell says. “And that’s all that matters.”
Dementia is a brain disorder that seriously affects a person’s ability to carry out daily activities. The most common form of dementia among older people is Alzheimer’s disease (AD), which initially involves the parts of the brain that control thought, memory and language. Although scientists are learning more every day, right now they still do not know what causes Alzheimer’s, and there is no cure.
Scientists think that as many as 4.5 million Americans suffer from Alzheimer’s disease. The disease usually begins after age 60, and risk goes up with age. While younger people also may get AD, it is much less common. About 5% of men and women ages 65 to 74 have AD, and nearly half of those age 85 and older may have the disease. It is important to note, however, that AD is not a normal part of aging.
Alzheimer’s disease is named after Dr. Alois Alzheimer, a German doctor. In 1906, Dr. Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. He found abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles). Today, these plaques and tangles in the brain are considered signs of AD.
Scientists also have found other brain changes in people with AD. Nerve cells die in areas of the brain that are vital to memory and other mental abilities, and connections between nerve cells are disrupted. There also are lower levels of some of the chemicals in the brain that carry messages back and forth between nerve cells. AD may impair thinking and memory by disrupting these messages.
Scientists do not yet fully understand what causes Alzheimer’s, but there are several known risk factors:
In addition to the above, scientists are finding increasing evidence that some of the risk factors for heart disease and stroke, such as high blood pressure, high cholesterol and low levels of the vitamin folate, may also increase the risk of AD. Evidence for physical, mental, and social activities as protective factors against Alzheimer’s is also increasing.
Alzheimer’s disease begins slowly. At first, the only symptom may be mild forgetfulness, which can be confused with age-related memory change. Most people with mild forgetfulness do not have AD. In the early stage of AD, people may have trouble remembering recent events, activities, or the names of familiar people or things. They may not be able to solve simple math problems. Such difficulties may be a bother, but usually they are not serious enough to cause alarm.
However, as the disease goes on, symptoms are more easily noticed and become serious enough to cause people with AD or their family members to seek medical help. Forgetfulness begins to interfere with daily activities. People in the middle stages of AD may forget how to do simple tasks like brushing their teeth or combing their hair. They can no longer think clearly. They can fail to recognize familiar people and places. They begin to have problems speaking, understanding, reading, or writing. Later on, people with AD may become anxious or aggressive, or wander away from home. Eventually, patients need total care.
An early, accurate diagnosis of Alzheimer’s helps patients and their families plan for the future. It gives them time to discuss care while the patient can still take part in making decisions. Early diagnosis will also offer the best chance to treat the symptoms of the disease.
Today, the only definite way to diagnose AD is to find out whether there are plaques and tangles in brain tissue. To look at brain tissue, however, doctors usually must wait until they do an autopsy, which is an examination of the body done after a person dies. Therefore, doctors can only make a diagnosis of “possible” or “probable” AD while the person is still alive.
At specialized centers, doctors can diagnose AD correctly up to 90 percent of the time. Doctors use several tools to diagnose “probable” AD, including:
Sometimes these test results help the doctor find other possible causes of the person’s symptoms. For example, thyroid problems, drug reactions, depression, brain tumors, and blood vessel disease in the brain can cause AD-like symptoms. Some of these other conditions can be treated successfully.
Alzheimer’s disease is a slow disease, starting with mild memory problems and ending with severe brain damage. The course the disease takes and how fast changes occur vary from person to person. On average, AD patients live from 8 to 10 years after they are diagnosed, though some people may live with Alzheimer’s for as many as 20 years.
No treatment can stop AD. However, for some people in the early and middle stages of the disease, the drugs tacrine (Cognex), donepezil (Aricept), rivastigmine (Exelon), or galantamine (Razadyne, previously known as Reminyl) may help prevent some symptoms from becoming worse for a limited time. Another drug, memantine (Namenda), has been approved to treat moderate to severe AD, although it also is limited in its effects. Also, some medicines may help control behavioral symptoms of AD such as sleeplessness, agitation, wandering, anxiety, and depression. Treating these symptoms often makes patients more comfortable and makes their care easier for caregivers.
Scientists are exploring several new potential Alzheimer’s treatments in hopes of slowing down the disease’s progression and lessening it’s effects, including:
Most often, spouses and other family members provide the day-to-day care for people with Alzheimer’s disease. As the disease gets worse, people often need more and more care. This can be hard for caregivers and can affect their physical and mental health, family life, job, and finances.
The Alzheimer’s Association has chapters nationwide that provide educational programs and support groups for caregivers and family members of people with AD. Contact information for the Alzheimer’s Association is listed below.
Updated April 2015