Over time, changes in the brain of a person with Alzheimer’s or dementia can lead to more and more puzzling and disturbing behaviors. As memory and cognition decline, the simplest tasks can take enormous effort, leading to frustration and emotional outbursts (what the authors of The 36-Hour Day call “catastrophic reactions”), aggressive behavior, accusations that relatives and health aides are stealing or lying, disrobing and even inappropriate sexual comments and behavior. Everyday routines around getting dressed and eating become a battle as people who never cared for sweets before start binging on candy, or refuse to eat a certain color of food, or insist on wearing multiple pairs of pants.
“People always think of Alzheimer’s as memory loss, but I’ve seen it all,” says Sharonna Bloom, LCSW, senior social worker in the department of neurology at Columbia University Irving Medical Center. “People start acting completely out of character.” Whatever strange behavior may be cropping up, you are not alone. Here are some strategies on how to handle unusual behavior in a person with Alzheimer’s.
Rule out other possible causes
Whenever a new behavior crops up, your first step should be assessing whether there’s a physical cause, says Nataly Rubinstein, LCSW, founder of Alzheimer’s Care Consultants and author of Alzheimer’s Disease and Other Dementias—The Caregiver’s Complete Survival Guide. “Infections such as UTIs can cause a sudden behavioral change—a simple blood test or urinalysis can tell you what’s going on,” she says. It’s also possible that your loved one has fallen and broken a bone or has another injury, but isn’t able to communicate their discomfort to you, or that the behavior could be a side effect of medication. Seeing a health-care provider for a medical exam should always be your first step.
It’s also possible that your loved one is reacting to something unpleasant in their environment that they can’t quite express to you, so check if the bedroom is too hot, there’s too much noise, or their clothing is too tight or itchy; making sure they are physically comfortable may help manage any troubling behavior.
Keep it in perspective
If your mother snaps at you every time you try to get her out of bed, accuses you of stealing her jewelry, or starts hoarding cookies in her dresser drawer, remember that she is not doing this to be manipulative or to annoy you—it is due to physical changes in the brain that are beyond her control. As Rubinstein points out, you wouldn’t get mad at someone for having diabetes or breaking their arm, so it’s important to remember that it is the disease that is causing these changes, not the person with the disease.
And it is crucial to never take their emotional outbursts personally, adds Bloom. “People with dementia may say hurtful things, and the problem is when caregivers assign these outbursts meaning that isn’t really there,” she says. “If your mother yells at you but is calm around your sister, you may think that those are her true feelings coming out, that she always loved your sister best, but that may not be true at all. Her brain is shrinking and she just may be unable to access specific memories about you—there’s no real meaning behind it.”
Validate, distract, and redirect
One strategy that will get you nowhere is trying to reason with a person with dementia, says Amy Goyer, the family and caregiving expert for AARP and author of Juggling Life, Work and Caregiving. “You can’t convince them that they are wrong, so it’s better to validate their feelings to soothe them.” For example, if your spouse insists that a relative has been stealing all her jewelry (when it’s clear she just misplaced the items), you can say, “Oh, that is terrible, I know you love those earrings. I will see what I can do about getting them back.” Then, distract them with another activity, like going for a walk, listening to music, or leafing through an old photo album. By redirecting their attention to another pleasant activity, they may quickly forget what it is they were upset about. Learning how to redirect a loved one with Alzheimer’s is a very important coping strategy for caregivers.
Problems with bathing and eating
If your relative gets upset and acts out any time you try to help her get her dressed or bathed, there is a good reason: Tasks that people with healthy brains can do on autopilot can be completely overwhelming for those with dementia, who struggle to remember and master every little step: how to put an arm through a sleeve, pull on socks, button a blouse. Keeping things as simple as possible, by choosing clothing with few buttons or zippers, for example, can help, as well as calmly giving clear, simple instructions every step of the way.
Keeping to a set schedule every day can also help with managing behavior, says Rubinstein. “A set routine is very comforting, because they know what to expect—they don’t have to be anxious wondering what is coming next,” she says.
Use white lies when you need to
Honesty is the best policy in most areas of life, but there will be times when telling a little fib is the kindest thing you can do for your confused relative, says Rubinstein. For example, if your wife does not want to eat lunch because she insists her mother (who has been dead for 30 years) is coming soon to pick her up, you can say, “Oh, that’s so lovely, and I know how much you enjoy seeing your mother. She got stuck in traffic and will have to come another day this week, but she asked you to have lunch with me today.” Keep in mind that there is a difference between a lie that is for your own gain, and what Rubinstein calls a “loving deception,” which is to help the person transition through a difficult moment.
Remember the three-month rule
The dementia brain is changing all the time, and that means that most difficult behaviors will last only a limited amount of time, says Rubinstein. “As soon as you get used to one type of challenging behavior, poof, it’s gone, and something else happens.” That is why flexibility—and the ability to adapt all the above techniques to whatever challenge comes next—is the greatest skill a caregiver can have.