I think one of the most feared scenarios with Alzheimer’s and other dementias is that a loved one will become permanently (and possibly dangerously) angry and aggressive.
As I recently read in the comments section of a New York Times article, “Not everyone is still nice or interesting when they get dementia. I have to confess that my mother was a monster when she got dementia.”
Although there’s no normal pattern with dementia, short-term moods of anger and aggression are fairly common. No one knows how the disease will progressively affect any given person; as the saying goes, “When you’ve seen one case of Alzheimer’s, you’ve seen … one case of Alzheimer’s.”
But this particular stereotype—that a person can turn into a monster 24/7—is one that gives me pause, largely because in all my experience working with elders I’ve never seen it happen.
That made me wonder: Is my experience unusual? Is it possible for dementia to cause a perpetual state of anger, aggression, and just plain nastiness? Or is something else at play?
Dementia Experts Weigh In
I decided to put on my journalist hat and ask some dementia experts. I put the question like this:
“Can dementia physiologically damage the brain in such a way that anger is the only available expression for that person?” Or: “Can dementia alone result in someone being in a permanent emotional state of anger and aggression?”
“The answer is, not typically,” she said. “For people who tend to be angry people, [dementia is] certainly going to give them more opportunities to be dissatisfied and to be irritated and angry more often. [But] I’ve not seen any dementia keep a person angry all the time. I have seen [people tend] be more negative, but it’s often the environment or our behavior that escalates them into anger.”
“Brains are so complicated that anything is possible—so I’m not going say it’s not possible,” said Melanie Bunn, RN, MS, nurse consultant for more than 30 years and Positive Approach to Care trainer. “But I haven’t really seen anybody in my practice who I couldn’t do something to make life better. There are some people who are just not ever going to be ‘happy,’ but I’ve never had anybody I wasn’t able to help.”
For Megan Carnarius, RN, a Colorado-based memory-care consultant and a 30-year veteran of skilled- and assisted-living administration (and a hero of mine), the numbers are small. “Respecting the elders I provided care for, which is over 900, I would say eight people come to mind. Not very many people at all, but it happens. There are so many stories about people getting violent, [but] I can count on my hands how many people I worked with that have really been that way. I think people are more scared than what the reality [warrants].”
What Causes Anger and Aggression in Dementia?
“I think about half of [a person’s mood with dementia] comes from the inside and half of it comes from the outside,” Melanie said. All three of these expert women detailed numerous possible causes for persistent anger, including the following.
- Situational frustration. “When people are in an environment they can’t switch, they can get very irritable and angry because they don’t want to be there to start with,” said Teepa. “And the longer they’re in that environment—with people they don’t want to be with, in a place they don’t want to be—all they want is to get out, and [we tell them] ‘well, you can’t go.’ So that’s pretty aggravating; it would be aggravating for any of us! But [the anger] is not a continuous state; it’s that we’re continuously saying no, [even though] we mean it for a reason, to be helpful. It’s not the person that’s angry; it’s an angry-inducing environment and situation.”
- Unresolved life issues. “I’ve worked with families and have found out things about miscarriages or the first love that died in World War II that nobody ever talked about,” said Melanie. “If people don’t resolve issues in their life and they get dementia, those issues come back; and if people don’t get what they need to help them work through that, they can get really stuck.”
- Physical pain. “Some people have persistent pain that isn’t well-managed. That can make people really angry, and support doesn’t make that go away,” Melanie said. “Things like UTIs and even delirium can create temporary, high levels of distress unless you treat the underlying issue.” Many caregivers who see irritability start by checking for a UTI.
- Earlier brain trauma. “Brain injury definitely tips [difficult behavior] a little bit harder,” Megan said. “Somebody [may have] had traumatic head injury, something that has done damage to the brain. And then the person is trying to compensate and they can’t.” She recalled one person with dementia who had experienced oxygen loss during an earlier surgery. “He was a healthy man, super strong, and it was just so scary trying to take care of him. He would just explode at everything. His brain was so damaged that he couldn’t respond any other way.”
- Medication needs. Many senior care residences hew to a “no meds” policy—with good intentions (it’s not helpful to simply sedate someone into compliance). However, wisely prescribed meds can do a world of good. “There are some people that take a tiny bit of something, either it’s an antidepressant or antianxiety or an antipsychotic, a smaller amount at the right time of day so it hits their sundowning or allows them to sleep at night,” said Megan. “Antidepressants can be a small [solution] to the deeper irritability that’s going on with dementia and can help increase people’s resilience and endurance. They don’t get as reactive because there’s something supporting their mood.”
- Undiagnosed mental illness. “[A person] may have had bipolar disease all of their lives but enough frontal lobe function to stay put,” noted Melanie. “Now that they have dementia, they lose that frontal lobe function and that underlying psychiatric disease starts to shine through. That’s a case where it’s cruel not to treat with medication. You aren’t going to ‘support’ that out of them.”
- Speed. “There’s definitely a reactivity to not being engaged or touched or assisted in a way that helps the person process the information of what you’re doing or how you’re doing it,” said Megan. She described one woman with dementia who became aggressive about three or four weeks after moving to a new place. “I said to the director, ‘talk to the staff about how they were in the beginning.’ Because there’s been a subtle shift, [and now they’re] not giving her enough time. As soon as people started speeding up, just assuming they knew her, then she began reacting. And when people are non-verbal that can’t be expressed any other way than being reactive. I told the director that [this woman] could be an extraordinary teacher for the staff.”
- Terminal agitation or terminal restlessness. Hospice workers use these terms to describe a common symptom very near the end of life (that is, within days or two weeks), whether or not someone has dementia. When near death, even a formerly quiet, calm person may start to thrash about, make angry demands, experience delirium, and be unable to calm down. Purported causes range from physical (such as medication toxicity, organ shutdown, waste buildup, and decreased oxygen intake) to “psychosocial and spiritual distress”—in other words, fear and anger caused by facing the end of life.
Not Their—or Your—Fault
Even with this knowledge, it’s incredibly hard to deal with someone living with dementia who’s also perpetually angry, day in and day out. When you feel afraid and frustrated, here’s what you can do.
- Know that your loved one isn’t treating you badly because they’ve turned into a mean person; they have a brain injury. They may be trying to tell you something but can’t. Try not to react with anger or fear.
- Step back; walk away if you need to, especially if you feel physically threatened.
- Breathe and stay calm. If there’s a task you’re trying to get done (such as getting the person dressed), slow way down, or come back later.
- Reassure the person that you understand their frustration. Keep your body language relaxed, and maintain eye contact.
- If you are a praying person, and especially if you know that the person has a faith background, offer to pray for him or her. You don’t have to be a “professional” minister to do this! Simply ask, “I am so sorry you’re unhappy/hurting. Would you like me to pray for you?” If they say yes, ask if you may hold their hand or put your hand on their shoulder. Then keep it short–no more than 30 seconds. Speaking slowly and clearly, a prayer can go something like this: “Dear God, I ask you to bless [name] right now, and to send your comfort. God, please stay close to [name], to reassure and remind [name] that You are with [him/her] and will never leave [him/her]. Thank you, dear God, for being our joy and our strength. Amen.”
- Get help often, and talk to others. It helps to know you’re not alone.
Perhaps most important: Be gentle and forgiving with yourself as you do your best to love your person with dementia. There’s no one right way. “It’s like the rules of the game have changed, and nobody told you,” said Melanie. “You can’t be held accountable for breaking a rule if you don’t know the rule exists. Helping [someone with dementia] isn’t about logic and reason. It’s dealing with it on an emotional level—helping her through her fear, and helping her feel that somebody is on her side.”
As you begin to figure out the rules and learn to love even in the difficult valley of anger and aggression, my hope is that you’ll feel more compassion for the person with dementia—and for yourself. Our loved ones can be great teachers for all of us.
Please let me know your thoughts in the comments below, or contact me privately if you prefer.