Your mild-mannered elderly mom, who’s had Alzheimer’s disease for a few years now, has suddenly exploded into rage, frustration, and paranoia.
What’s going on here?
It could be agitation, a common symptom of Alzheimer’s disease (AD) and other types of dementia. Agitation is an emotional, physical, and often verbal acting-out of anxiety, loss of control, physical discomfort, and fear. And it’s not something the person with Alzheimer’s can control.
“It’s important to remember that what seems combative is actually the result of brain damage,” says Tam Cummings, PhD, gerontologist, speaker, and author of four books on dementia.
In a disease marked by heartbreaking deficits, episodes of agitation are among the toughest for friends, family, caregivers, and the individual themselves to face.
What Is Agitation?
A person with Alzheimer’s who is agitated appears anxious, restless, and upset. They may pace or move around in other ways and may become verbally or physically aggressive.
For some people, periods of agitation tend to start around dusk, as the sunlight fades; this is called “sundowning.”
Agitation is common among people with dementia: According to a research article published in July 2021 in the Journal of Alzheimer’s Disease, 60 percent of people with mild cognitive impairment (problems with memory or mental function that may or may not progress to Alzheimer’s dementia) and 76 percent of those with Alzheimer’s disease experience it. What’s more, the severity of agitation tends to increase over time.
Not surprisingly, agitation is distressing to both the people experiencing it and their caregivers. A research article published in August 2022 Scientific Reports noted that agitation is the only Alzheimer’s symptom strongly associated with both caregiver burden and depression.
What Causes Agitation?
To some extent, agitation is a result of the neurodegeneration — the damage to neurons — occurring in the brain of someone with Alzheimer’s disease.
But environmental factors play a role, too. According to a review published in April 2021 in Frontiers in Neurology, pain, sleep disturbance, acute illness, depression, a change in medication, and hospitalization can all trigger agitation.
In some cases, then, episodes of agitation can potentially be prevented or the cause of the episode addressed.
“The semi-good news is that the things that trigger agitation can usually be found and altered,” says Laura N. Gitlin, PhD, distinguished professor and dean emeritus at the College of Nursing and Health Professions at Drexel University in Philadelphia.
Along with colleagues, Gitlin developed a protocol for dealing with agitation and other behavioral symptoms called the DICE Approach — short for "describe, investigate, create, and evaluate" — that calls for caregivers to pinpoint the cause, find ways to change it, devise solutions, and then adjust as needed.
In many cases, the precipitating factor is one or more of the following:
Pain or Discomfort Caregivers may have to troubleshoot the source of the discomfort by putting together imprecise cues, including grimacing, impaired movement, or holding an aching body part.
Confusion Any change in routine, whether the arrival of a new caregiver, a change in living facility, or an unexpected stimulus, can create alarm and terror.
Poor Sleep The fuzziness, headaches, and unsteadiness of dysfunctional sleep can contribute to agitation.
Medication Problems Drug side effects and interactions can compromise memory, balance, and well-being and lead to agitation.
What Caregivers Can Do to Help an Agitated Person
To keep agitation from spinning out of control, experts suggest tactics that short-circuit the attack and its consequences.
Ensure physical safety. Agitated individuals can lash out, harm themselves, or wander, so their environment must be secured. Check that child safety locks on doors that lead outside are engaged, ensure stove burners are covered, and remove articles that can be damaged or thrown.
Remain neutral. Maintain a dispassionate, nonjudgmental demeanor, and avoid language that implies disapproval, negativity, or criticism.
“Use an even tone of voice, and try not to correct things like factual errors or memory lapses,” says David Geldmacher, MD, director of the division of memory disorders and behavioral neurology at the University of Alabama Heersink School of Medicine in Birmingham, and a leading researcher on agitation in dementia.
Validate and forgive. Agitated people don’t mean to attack; they’re simply powerless to handle runaway emotions. Approach them with sympathy, understanding, and compassion.
“Say something like, ‘I see you’re feeling very frustrated, but I assure you that everything is okay,’” suggests Cummings.
Deflect and distract. Divert the person’s attention. Offer a favorite snack, share an interesting photo, or engage the individual in a “helpful” chore.
“When you provide a task that can be easily mastered, like helping fold towels or sort coins, you create an opportunity for them to be productive,” says Dr. Geldmacher.
“And when you’re productive,” he adds, “you can’t be destructive.”
Make eye contact. “When talking to an agitated person, bend over and look her right in the eye,” says Cummings.
Warm, direct, eye-to-eye focus communicates empathy and kindness. But approach the agitated person slowly, gently, and with forewarning to ensure she doesn’t feel confronted or threatened.
Manifest calm. A soothing tone, slow and deliberate speech, dimmed lights, and quiet, peaceful surroundings dial down emotional intensity. Eliminate extra noise, play soft music, draw the shades, offer tea, and capture their full attention with a relaxing, but meaningful, diversion.
“If someone loved old Westerns, stockpile them to use at critical times; if they enjoy big band music, have selections ready,” says Geldmacher.
Keep it simple. Avoid complexity.
“Many people with dementia can retain only one piece of information at a time, so skip things requiring multiple steps. Better to say ‘let’s see what’s for lunch,’ than to expect them to understand the discrete actions needed to assemble a sandwich,” says Geldmacher.
In fact, the word “let’s” reassures them that you’ll be a co-participant. Manage your expectations and listen carefully to what the individual says, repeating the exact phrasing to demonstrate you’ve heard him and care about his needs.
What to Do to Help Prevent Agitation
Maintaining a controlled, peaceful environment with adequate personal attention can help diminish future episodes. Doing that on a daily basis requires that caregivers:
Reinforce predictability. Build milestones and routines into the person’s day.
“That doesn’t mean that you have to follow a specific time schedule, just that the person knows to some degree what to expect. For example, he understands that the day begins with picking out clothes, or lunchtime is followed by a walk,” says Geldmacher.
Create ‘agency.’ Provide opportunities for the individual to exercise choice. Having options enhances the person’s agency — their perceived impact on the world — without overtaxing them. Whether that means giving the individual the chance to select between two different outfits, a few menu options, or a couple of activities, “owning’ a decision bolsters self-reliance without overtaxing memory.
“She may forget major family events, but the memory for habits, tasks, and procedures is often retained, and reinforcing it can reduce the risk of agitation,” says Geldmacher
Consider gentle touch. Touch stimulates the release of the feel-good neurotransmitter serotonin. But any physical interaction should be preceded by an explanation and a request for permission. Once that’s established, gently hold her hand, stroke her back, or massage her feet.
Normalize sleep. “The brain chemistry that supports sleep breaks down as Alzheimer’s progresses, so when sleeplessness becomes a trigger for agitation, supplemental melatonin can replicate what the brain should be doing,” says Geldmacher.
Geldmacher finds that a 3- to 5-milligram dose generally improves sleep, particularly when accompanied by a predictable bedtime ritual.
Encourage physical activity. The American Heart Association recommends that all adults spend 100 to 150 minutes each week walking, pedaling a stationary bicycle, swimming, or engaged in some kind of activity. For those prone to agitation, the movement not only promotes general health, but may help siphon off excess energy that could otherwise escalate agitation.
What Not to Do When a Person With Alzheimer’s Is Agitated
In general, and particularly when a person is agitated, using precise, sympathetic, and nonjudgmental language is a must.
“Things like yelling, screaming, and correcting just add fuel to the fire,” says Gitlin. Instead:
Don’t correct, scold, or blame. Instead of stating, “that’s wrong,” guide the person into the right behavior. Never imply deliberate intent. The individual understands things are not “right,” but implying purposeful misbehavior is insulting and shows unrealistic expectations.
“This disease is so complicated that your mother may recognize you in the morning and by the afternoon, when she has used up all her attention, she may no longer remember your name,” says Gitlin. Both reactions are beyond her control.
Don’t label. Never refer to a person with Alzheimer’s disease as disabled, demented, out of her mind, or slow. Instead, acknowledge her frustration, and assure her that things will soon calm down.
“Any reference to impairment, including when you say, ‘I just told you that, you must remember,’ can trigger agitation. Always reinforce the positive rather than pointing out the negative,” says Geldmacher.
Don’t command. Rather than issuing an order, proffer a respectful invitation, like, “why don’t we go into dinner together?” Many older people bristle at “infantilizing” words that make them feel like misbehaving children.
“No matter how they act, they are adults who have lived a full life, and they deserve respect for that,” says Gitlin.
Don’t argue or contradict. If dad insists you haven’t seen him for years, graciously accept the error.
Saying “I know it must seem like a long time since you’ve seen me,” shows understanding and empathy without criticism, even if you spent yesterday by his side.
“In a provocative situation, take a deep breath, take a step back, provide objective information, and thank him for his thoughts,” says Gitlin.
Don’t overstimulate. Keep stimuli to a minimum. Minimize exposure to loud noises, strong smells, rapidly changing visuals, and sudden movements.
“Approaching someone too quickly, talking too rapidly, or asking too many questions can all feel threatening,” says Cummings.
Don’t overmedicate. Uncontrolled agitation can imperil the individual and others, but medicating him into submission is equally harmful. Rather than turning to pharmaceuticals to restore calm, Gitlin encourages caregivers to use DICE to diagnose, address, and reevaluate ways to reduce anxiety and stress.
To Prevent Caregiver Burnout, Get Support
Providing care for an individual prone to agitation can be depleting, isolating, and exhausting. To prevent burnout, Geldmacher encourages caregivers to meet and compare notes with others who minister to people with Alzheimer’s disease.
“The best place to share knowledge is in a support group for caregivers,” says Geldmacher.
The Alzheimer’s Association provides support referrals through its website and its 800-272-3900 helpline. In addition, the Alzheimer’s Foundation of America, the National Institute on Aging (through local Agency on Aging offices ) and the Caregiver’s Alliance maintain links to helpful groups, as well as to other caregiver resources. Many local government offices, geriatricians, and religious institutions, too, can connect caregivers with peers.
With the number of people diagnosed with Alzheimer’s projected to double to about 13 million by mid-century according to the Alzheimer’s Association, the demand for new techniques and treatments promises to be astronomical. But Geldmacher believes the outlook is hopeful.
“We’re rapidly moving towards an improved ability to diagnose the pathology of dementia before symptoms occur, as well as on medications that may be able to slow the illness,” says Geldmacher.
“I believe we’ll be able to destigmatize the disease and make it easier to prevent and handle agitation in the years ahead,” he adds, “so that Alzheimer’s will be handled the way we now approach heart disease, as a chronic controllable condition.”