Issue Table of Contents
Anger Management: Many neurologic conditions can cause difficult behavioral changes. Try these strategies for keeping your loved one's aggression or confusion in check.
- from mild to monstrous
- mindfulness is better than meds
- strategies to help your loved one
- strategies to help you, the caregiver
- caregiver resources
When Meredith Andrews* met her husband in 2004, she thought he was the perfect combination of Atticus Finch and Fozzie Bear—confident, grounded, and fun-loving. He earned a bronze star in Iraq for his service in the Marines, worked as the chief ethics and compliance officer for an international real estate company, and was the fearless leader of their family. “Nothing ever bothered him,” Andrews says.
That all changed with a thump at 5 am on January 12, 2015, when he fell to their brick kitchen floor. A fitness buff, the 41-year-old hadn't been drinking enough water to fuel his intense workouts and had fainted. The blow to his head resulted in a traumatic brain injury—and the calm, caring husband Andrews knew became someone else.
“Ever since, he gets agitated, flies into fits of rage, and is downright mean,” she says. “It's a unique experience to see your best friend, your husband, as a completely different person. Nothing could have prepared me for the unfiltered yuck he hurls at me every single day. There are brief rays of sunshine, but then it flips, and I feel like a rag doll in a washing machine.”
FROM MILD TO MONSTROUS
Such dramatic personality shifts are not unusual among those diagnosed with a traumatic brain injury or another brain disorder. “Damage to the frontal lobes, whether from traumatic brain injury, dementia, or some other neurologic condition, can cause behavior, personality, and mood problems,” says May A. Kim-Tenser, MD, an assistant professor of clinical neurology at the University of Southern California Keck School of Medicine and a member of the American Academy of Neurology (AAN). The frontal lobes are the center of decision making and impulse control in the brain, she explains. When they get damaged, personality changes such as disinhibition, anger, and aggression are common.
“It's almost like he has no filter,” says Andrews of her husband's behavior. “He has zero capacity for empathy, gratitude, and humility.”
MINDFULNESS IS BETTER THAN MEDS
Emotional and aggressive outbursts can be upsetting and disconcerting for caregivers and may lead to depression, which can, in turn, cause distress in patients. To control these outbursts, doctors traditionally prescribe drugs such as antipsychotics and mood stabilizers. However, a report published this past March in the British Medical Journal suggests that medications meant to ease anxiety, brighten dark moods, and suppress delusions may in fact be less effective than simple strategies for responding to these behavioral changes.
After reviewing two decades' worth of research, the scientists concluded that drugs may create more problems than they solve because of side effects ranging from constipation to worsened cognition. Rather than rely on medications, the report encourages physicians to educate caregivers about behavioral and environmental approaches, says study author Helen C. Kales, MD, a professor of psychiatry and director of the Program for Positive Aging at the University of Michigan. (For information about situations when medication may be appropriate, see “When Drugs May Help.”)
In many cases, providing care that combines mindfulness, love, and logic can defuse difficult situations and alleviate stress and feelings of depression for both you and the person you're caring for.
STRATEGIES TO HELP YOUR LOVED ONE
TAKE CARE OF THEIR PHYSICAL NEEDS
When patients aren't getting enough sleep, aren't eating enough, or feel unsafe, their behavioral symptoms may get worse. To avoid this, be sure your relative is getting adequate sleep and not only eating a balanced diet, but also eating often enough. Untreated medical problems, such as urinary tract infections, dehydration, and pain, may also trigger behavioral problems. In fact, a 2011 analysis of older adults with dementia published by the Alzheimer's Association found that 36 percent had undetected illnesses—identified through a nursing assessment and laboratory tests—that were associated with behavioral and psychological symptoms such as agitation, repeated questioning, crying out, delusions, and hallucinations.
As a patient's brain degenerates, he or she becomes more vulnerable to stressors, and medical illnesses that might seem minor to a younger or healthier person can trigger profound behavioral changes, says Dr. Kales. Be sure the person you're caring for gets regular checkups to catch any medical problems that may need attention.
MEET THEM WHERE THEY ARE
Don't try to correct or contradict what the patient feels or believes. Challenging those beliefs or statements, however false they may be, may only agitate him or her further. If your mom, for instance, calls the family cat a dog, let it be a dog. If you're a woman and your mom calls you “he,” be a “he” for the moment. The more you can let go and join them in their reality, the easier things will feel, says Elizabeth Brood, 35, of Mount Laurel, NJ, who cares for her parents, both of whom have Alzheimer's disease.
KEEP IT SIMPLE
Sometimes people lose the ability to process language following a brain injury or a stroke, or as degenerative diseases like Alzheimer's and multiple sclerosis (MS) progress. If that's happening, speak slowly and use simple phrases. Repeat yourself often and gently. “If I want to take my mom on a walk, sometimes I will repeat the word ‘walk’ five or six times,” says Brood. “I often use visual cues, too. I will hold her coat and open the front door, creating a non-verbal invitation to walk together outside.”
If you find yourself in the midst of a heated disagreement, take a step back, acknowledge the other person's feelings, and steer clear of unnecessary verbal battles. For Lynn Miller* of Beverly Hills, FL, whose partner of 20 years has MS, that means listening without judgment to her partner's delusions, which include believing that doctors gave her MS and that teenage boys in the neighborhood think she's promiscuous and want to have sex with her.
“Trying to stay calm and acting as a sounding board helps defuse her emotional upset,” says Miller, whose internal mantra is “just let her talk.” “I keep asking myself, ‘Is this important enough to require a response?’ If it isn't, I stay mum.” The exceptions, of course, are when the situation threatens her or her partner's health or safety. In that case, Miller, who has become good friends with local police officers, will call the authorities for help.
STICK TO A ROUTINE
Behavioral symptoms are hard to predict. You never know how your loved one is going to act or feel or how tired or agitated he or she is. Sticking to a basic schedule can help your loved one feel safe and keep delusions at bay. Conversely, straying from that schedule can trigger negative emotions, says Jennifer Molano, MD, an assistant professor of neurology and rehabilitation medicine at the University of Cincinnati College of Medicine and a member of the AAN and the Neurology Now editorial advisory board.
For Brood's parents, the daily routine—waking up, going to bed, and eating the same meals at the same time each day, and bathing and dressing on a consistent schedule—“has become part of their bodily memory, even if they don't remember it with their minds,” she says.
REDUCE CLUTTER AND CHILDPROOF EVERYTHING
Sometimes people with brain injuries become accident-prone or are easily overwhelmed. To guard against that, create a safe and simple environment free of unused items and background noise, says Dr. Kim-Tenser. If your mom uses a pan every day, for example, keep the pan on the burner. If she likes the light on at night, keep it on. The goal is to help patients feel safe in their surroundings to compensate for the lack of safety they feel inside their own minds, Dr. Kim-Tenser says.
In her parents' home in New Jersey, Brood maintains an uncluttered environment full of multisensory, functional items. “Like a young child, my mom is attracted to soft, colorful things, so there are lots of stuffed animals around,” she says. “We keep balls of varying sizes and colors and picture books of things my parents love like cats, fishing, Frank Sinatra, and textiles.” Brood has also removed everything breakable. Her parents' china closet is now filled with toys, pictures in plastic frames, books, and other indestructible objects.
Patients with neurologic diseases often go to extraordinary lengths to protect their distorted perceptions of reality. Many don't even realize they're cognitively compromised. Andrews' husband, for example, continued working even though he was no longer capable of responding to emails appropriately. In the end, his boss forced him to sign a contract stating he would adhere to his doctor's orders and keep work to a minimum.
Miller took a different approach, circumventing her partner altogether. Before each doctor's appointment, Miller sends typewritten memos to the physician with relevant medical records attached. She chronicles her partner's delusional behavior and other incidents she knows her partner won't divulge, in order to give the doctor a more complete picture of her partner's health and mental state.
ENGAGE IN SIMPLE ACTIVITIES
Do what you can to make the person you're caring for feel productive and engaged, says Dr. Kales. Focus on simple activities that match their abilities and interests. Brood's parents, for example, love gardening, music, and playing with the neighborhood kids. “We plant a colorful array of flowers in the garden, plants with varying smells and textures that my parents can touch, see, and inhale,” says Brood. She also encourages her mom and dad to take walks, toss a ball back and forth, and cuddle with the family cat.
STRATEGIES TO HELP YOU, THE CAREGIVER
CREATE A NETWORK
As soon as your family member is diagnosed, make a list of people you can rely on in a pinch, including children, sisters, brothers, aunts, uncles, in-laws, parents, and even distant relatives. For example, Andrews says her in-laws watch her daughters on occasion to give her time alone with her husband, and for a while her friends delivered nightly meals regularly.
MAKE ARRANGEMENTS WITH WORK
Ask your supervisor if you can telecommute, take a leave of absence, or use flex time to take an extended vacation, and find out what federal assistance programs are available to support time off for caregiving. If your parent, spouse, or a dependent child is affected, you may qualify for the Family Medical Leave Act, for example, which entitles eligible workers to take unpaid, job-protected leave for specified family and medical reasons without losing group health insurance coverage. Also, search the Internet to find support groups and organizations where you can connect with other caregivers, ask questions, and develop additional networks.
TAKE CARE OF YOUR OWN NEEDS
Just like the person you're caring for, you are probably less irritable and more patient if you're getting enough rest and eating regular healthy meals. The more you take care of yourself, the better you'll be as a caregiver, says Dr. Molano. Don't neglect health concerns or avoid screening exams, and if you feel guilty for taking some much-needed personal downtime, remind yourself that paying attention to your own needs is good for your loved one, too. Andrews says her in-laws take care of her husband once a month to give her a break.
DON'T TAKE IT PERSONALLY
When Brood bathes her mom, a battle inevitably ensues. “She will literally be foaming at the mouth, growling in my face, tearing at my hands as I try to help her undress, banging and kicking at the bathroom door trying to claw her way out. One time she grabbed a can of shaving cream and sprayed it across my body,” she says. Reminding herself that her mother's explosions are not on purpose and are simply the consequence of her disease helps Brood take them in stride.
Andrews has likewise come to terms with her inability to have a rational discussion with her husband. “There's no way to have a productive conversation that involves any type of emotional push-pull with someone who is in this state,” she says. Instead, Andrews relies on the cornerstone phrase, “I love you too much to argue,” to shut down combative conversations.
FIND THE SILVER LINING
Living with a neurologic disease can be traumatic for patients and caregivers alike, but it doesn't have to ruin your life. “When I meet someone new and am asked whether I have children, I reply, ‘Yes, I have two, they are 64 and 81,’” says Brood. “I have become their mother, and in a way our relationship has become more loving and vulnerable than ever before. It's like a grand cycle is completing itself.”
Brood recommends treating caregiving as an adventure. “If you can delight in the simple moments of awe and wonder, the agitations and delusions become so much more bearable,” she says. Her parents' joy in the simplest things—a fresh cup of coffee, flowers bursting through the soil, a brilliant suburban sunset—reminds Brood to observe the world as they do, fresh and new.
In Andrews' case, her focus is on the future. “I'm confident that we're going to look back on this season and wonder how we survived. But we're also going to laugh at some of my husband's outbursts, knowing he reverted to his kinder self over time.”
When Drugs May Help
* Family Caregiver Alliance: caregiver.org
* Caring from a Distance: cfad.org
* Caregiver Action Network: caregiveraction.org
* Home Care Assistance: homecareassistance.com
Experts agree that caregiver strategies should be the first line of defense in treating behavioral symptoms such as irritability, agitation, depression, anxiety, delusions, and insomnia. Nevertheless, drugs may be necessary in some cases, especially for managing situations where the patient or caregiver may be in danger, says Helen C. Kales, MD, a professor of psychiatry and director of the Program for Positive Aging at the University of Michigan.
Antipsychotics such as aripiprazole (Abilify), risperidone (Risperdal), olanzapine (Zyprexa), and quetiapine (Seroquel) may be prescribed for patients who have psychosis or aggression that could lead them to harm themselves or others.
Antidepressants such as fluoxetine (Prozac), sertraline (Zoloft), and imipramine (Tofranil) may be prescribed for patients whose depression interferes with their daily lives, leading to poor hygiene, excessive sleeping, or a loss of appetite.
Always talk to your loved one's doctor about the risks and benefits of a drug. Antipsychotics, for example, are associated with an increased risk of premature death among patients with dementia, in addition to other troubling side effects, Dr. Kales says.
If the doctor does prescribe medication, ask about the lowest effective dose, says Jennifer Molano, MD, an assistant professor of neurology and rehabilitation medicine at the University of Cincinnati College of Medicine and a member of the American Academy of Neurology and the Neurology Now editorial advisory board.
Roll the DICE
Some studies show that non-drug strategies for managing troublesome behavior are more effective than prescription medications. Researchers recommend the DICE (Describe, Investigate, Create, and Evaluate) approach. Here's how it works:
1. DESCRIBE: Note the “who, what, when, and where” of problem situations.
2. INVESTIGATE: Review all aspects of the patient's health including symptoms, current medications, and sleep habits as well as any physical or social factors that might be triggering the behavior.
3. CREATE: Develop a plan to prevent and respond to behavioral problems, from talking to your relative's doctor about discontinuing drugs with behavioral side effects to ensuring a safe and uncluttered home environment.
4. EVALUATE: Assess what is and isn't working for both you and your loved one and figure out what needs to be changed.
When Things Get Charged, Remember the Three
When patients become agitated, trying to argue with them or refute their beliefs may only feed their agitation, says Jennifer Molano, MD, an assistant professor of neurology and rehabilitation medicine at the University of Cincinnati College of Medicine and a member of the AAN and the Neurology Now editorial advisory board. Instead of fighting a losing battle, she suggests you respond to conflict with the “three Rs.”
1. RECOGNIZE or acknowledge their beliefs and fears—their emotions are real.
2. REASSURE them by taking steps to mitigate their fears or delusions.
3. REDIRECT their attention. Engage them in an activity or ask them to perform a task, preferably something that makes them feel productive.
* Meredith Andrews and Lynn Miller are pseudonyms. [Context Link]Back to top