Is your loved one’s dementia-related irritability, anxiety or other behavior change difficult for you to handle?
If your answer to this question is a resounding yes, don’t worry. You’re not alone.
Countless caregivers come to the AgingCare Caregiver Forum to vent about coping with the personality and behavior changes brought on by Alzheimer’s disease and other types of dementia. With a nod to the dark humor that sometimes accompanies dementia behaviors, over 30,000 caregivers have shared their own stories on a thread titled Grossed out and need to vent—I just caught Mom using my toothbrush to comb her hair!
Unfortunately, it’s hard to find humor in many of the changes that dementia causes. In fact, some behaviors, such as wandering or forgetting to turn off the stove, are not only dangerous, but they can also be life-threatening. Other behavior changes are less hazardous (e.g., Mom tells the same story all day, Dad compulsively loads and unloads the dishwasher, Grandpa shouts inappropriate comments in public), but they are no less problematic for caregivers.
Responding to Challenging Dementia Behaviors
Feeling confused, worried, frustrated or even angry about the challenging behaviors exhibited by a family member with dementia is normal.
However, Nataly Rubinstein, MSW, LCSW, C-ASWCM, a former dementia caregiver and the author of Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, points out that the patient and their bothersome behaviors may not be the sole reasons for this stress. Your negative reaction may be to blame as well.
“One big reason these behaviors are ‘unwanted’ is because of their disruption to everyday life,” Rubinstein notes. “Admittedly, many behaviors are unhealthy and dangerous for you and your loved one. Other times, though, it’s not the actual behavior that’s causing so much trouble—it’s our reaction to that behavior.”
Sometimes, caregivers limit their options when it comes to dealing with dementia patients based on their past relationship dynamics. We don’t want to have to dislike, redirect or manage a parent or spouse’s behavior. In fact, we don’t want the relationship with our care recipient to change at all! Sadly, these behaviors are a constant reminder that things have changed dramatically and forever.
Rubinstein speaks from firsthand knowledge. In addition to her years of experience as a licensed clinical social worker and geriatric care manager, she also served as a primary caregiver for 16 years after her own mother was diagnosed with dementia.
“Sometimes, the new normal is more a problem for you than for your parent,” she points out. “For instance, you are the person who tends to get upset when the same question is asked over and over again, not your loved one. I’m not saying it’s easy, but you might need to come to terms with the fact that the best thing to do is get into the patient’s world and just provide the answer over and over again.”
Rubinstein addresses the following common behaviors that frustrate dementia caregivers and offers practical advice on how to cope with them in ways that preserve your own sanity.
Repetitive Stories and Questions
Mom asks you the same question over and over again, even though you just answered it five minutes ago.
At their core, Alzheimer’s disease and other forms of dementia are diseases of forgetting. As these illnesses progress, patients live increasingly “in the moment,” and they lose the ability to think and process information. For someone in this situation, repetition—whether it’s asking a question, stating a fact, or telling a story—is comforting.
SOLUTION: It will take patience on your part, but it’s usually best for everyone if you answer the same question or listen to the same story again and again. Admittedly, it’s difficult having to put the “annoyance” factor aside, but handling repetitiveness in this manner doesn’t hurt you. It may even help your loved one by preventing much more serious episodes of agitation, confusion or aggression, Rubinstein says.
A technique called redirection can help to shift attention away from repetitive questions or statements. Finding a new, familiar or comforting topic to focus on may break the repetition loop and at least buy you some time to turn away, breathe deeply and think of your best next step.
Compulsive Behaviors
Dad keeps taking everything out of his wallet and putting it back in.
Behaviors like constantly checking to see if the door is locked, packing and unpacking clothing, or constantly using the bathroom are usually manifestations of anxiety. It’s not uncommon to deal with this challenging behavior as dementia progresses.
SOLUTION: First, determine if any of these behaviors are causing any real harm.
“Giving cease-and-desist advice to your loved one will only spark stress and arguments,” Rubinstein cautions.
Do all you can to help the patient cope with their anxiety. Speak in a calm, gentle voice and don’t be afraid to try redirecting them. Remember, they are seeking reassurance. Maintaining a routine may help with familiarity and giving your loved one a sense of control. When compulsive behaviors are distressing or at all risky, a physician should be notified. Pharmaceutical intervention may be able to provide some relief for obsessive or compulsive behaviors, benefitting both you and your loved one.
Toileting Problems
Dad has started peeing in the bathtub, peeing in the sink and having accidents regularly.
It’s common for Alzheimer’s patients to struggle with incontinence. Sometimes they simply don’t realize they need to use the bathroom or can’t make it there in time. And other times, they may have forgotten the location of the bathroom or what its purpose is.
SOLUTION: Realize that it’s okay to feel reluctant about assisting with toileting and/or incontinence care. This is a very personal task. If you’re experiencing toileting problems, Rubinstein recommends making a doctor’s appointment to ensure that an underlying medical condition or medication isn’t the cause. Establish a regular bathroom routine and encourage the patient to go instead of asking whether or not they need to.
“You may also find it helpful to place signs indicating where the bathroom is, make the toilet seat a different color, provide clothes without complicated zippers or buttons, or buy waterproof pads for beds, furniture and car seats,” she says.
Ultimately, don’t beat yourself up if you feel too overwhelmed to handle toileting problems. For many families, incontinence is the determining factor in the decision that a loved one needs more help than they can personally provide.
Paranoia
My mother thinks we’re stealing from her.
As time goes on, Alzheimer’s patients lose the ability to recognize their homes, their friends, their family and even their own reflections in the mirror. In the midst of this unfamiliarity, a dementia patient struggles to make some sense of their surroundings. However, their broken brain causes them to arrive at some outrageous conclusions. They can hold on to the false ideas they form for quite some time. Even though your loved one’s belief that you’re trying to steal her jewelry may seem irrational to you, it’s nothing short of reality to her. No amount of convincing or “evidence” will disprove a loved one’s delusional thoughts.
SOLUTION: Dealing with paranoid delusions is tricky. The best things you can do are to remember that your loved one isn’t trying to hurt you and try not to take things personally.
“Know beforehand that rational explanations and clarifications probably won’t work,” Rubinstein says.
Carol Bradley Bursack, author of Minding Our Elders: Caregivers Share Their Personal Stories, suggests keeping tabs on belongings, leaving reminders and keeping very good records. Oftentimes, there is no way of proving yourself to a loved one with dementia, but ensuring you have your bases covered will provide you with peace of mind.
Read: Alzheimer’s: Theft, Paranoia or Forgetfulness?
Agitation and Irritability
Mom wakes up frequently at night, so we’re both tired and cranky all day.
A study published in the Journal of the American Geriatrics Society found that Alzheimer’s-related agitation, irritability and sleep problems are associated with greater caregiver stress, which should come as no surprise to dementia caregivers. The same study found that the frequency of these behavioral symptoms increases with the progression of dementia. What is more, this combination of troubling behaviors and stress is associated with earlier placement in long-term care facilities. Therefore, it’s critical for dementia caregivers to understand the causes of these behaviors since they are important factors in future care decisions.
SOLUTION: To start, it’s best to see a physician to rule out any medical explanation for increased agitation, irritability and sleep problems. Infection, dehydration, pain and medication interactions could all be contributing factors. If no underlying medical issue is found, caregivers should focus on improving sleep hygiene and optimizing the home environment (e.g., comfortable clothing, temperature, lighting, mattress, pillows). Additional measures, such as sticking to a daily routine can minimize stress and provide reassurance. Behavioral interventions may work for a while, but there may come a time when medication yields better outcomes. If initial efforts don’t work well enough to allow for consistent sleep at night and calmer periods during the day, consider hiring a nighttime aide or regular daytime respite to give yourself a break.
Staying Positive While Coping With Dementia Care
“Ultimately, while you can’t change the progression of the disease—or even greatly influence your loved one’s behaviors—you can take steps to minimize the stress both of you feel as a result of behavior changes,” Rubinstein reassures.
“Also, keep in mind that, while many of the behaviors that result from memory loss can be difficult to deal with, it doesn’t mean all the joy is gone from your life and that of the patient,” she adds. “Caring for my mother wasn’t always easy or enjoyable, but I can assure you that we did share plenty of smiles, laughs and love. You, too, can have a positive impact on the patient’s quality of life—and you can definitely still enjoy special moments with your loved one.”
Sources: Management of Neuropsychiatric Symptoms of Dementia in Clinical Settings: Recommendations from a Multidisciplinary Expert Panel (https://doi.org/10.1111/jgs.12730)