The first time Lori Venable’s husband, Tom, experienced paranoia came as a shock. The episode happened after a meeting to plan a memory cafe, a gathering the couple helps host for people affected by memory loss. He’d forgotten that she’d asked him to join the conversation, and that he’d said no.
“He just got so angry that I was trying to exclude him, and it really threw me for a loop because we’ve always had a very loving and cordial relationship,” says Lori, 62, a retiree and dementia advocate who lives in Ann Arbor, MI. “We’ve never yelled at each other about anything.”
Tom, 78, was diagnosed with mild cognitive impairment at age 72 and later with Alzheimer’s disease. When he accused her of lying to him, Lori hadn’t had much practice handling conflict with someone who has dementia.
While tense moments and misunderstandings like those happen less often now, Lori says she feels more prepared to handle the next one. You will, too, with these tips.
Learn All You Can About Dementia
Halima Amjad, MD, PhD, MPH, is a dementia specialist at the Johns Hopkins Memory and Alzheimer’s Treatment Center. She says when people first hear the diagnosis, they often imagine what is typically advanced dementia.
“A person is extremely confused, they might not recognize family members, they need help for every basic activity,” she says.
But people are often diagnosed much earlier than that, and it’s important to understand:
- What kind of dementia your loved one has
- The stage they’re in
- How the disease might change a person and your relationship with them
For example, in the early stages, loved ones can sometimes confuse dementia-related behaviors with everyday stubbornness. But it’s key to realize that even though your loved one is the same person and may be lucid sometimes, Amjad says, their brain is not working the way it used to.
“With dementia, it’s not always going to look the exact same every minute of the day or on different days,” she says. “They might be able to do something better one day than the next. It’s not all or nothing.”
The disease affects everyone differently. But according to Amjad, here are some tips that may help you communicate better with your loved one:
Expect ups and downs. Their memories or ability to do things may come and go.
Notice timing of mood changes. They may get agitated in the evening, also called sundowning.
Approach them slowly. Sudden, fast movements can seem scary.
Walk away if you get upset. Give yourself space to calm down when you get frustrated.
Don’t correct them. You can’t argue or reason with someone who has dementia.
You’ll also want to acknowledge your loved one’s underlying feelings, even if they believe something that isn’t true.
“Be willing to go into their reality and join them there,” says Amjad, who’s also an assistant professor of medicine at Johns Hopkins University School of Medicine. “Trying to pull them back to ours usually backfires.”
While Amjad tells caregivers to be realistic about their loved one’s condition, she also urges families to stay positive and to focus on what the person with dementia can still do.
Get input from a health professional on how much independence is safe for your loved one. But, in general, Amjad says, it’s good to let people with cognitive changes do as much as they can for themselves for as long as possible.
Take Tom, for instance. He can still handle most activities of daily living alone, Lori says. He can shower and dress himself. He can’t drive safely, but he can still enjoy walks. She just makes sure he has his cellphone when he leaves the house.
Lori does need to remind Tom to wear his hearing aids and take his morning and nightly meds. And now that it’s summer, she’s moved his shorts to the front of the closet. That way, he doesn’t grab his winter pants by mistake.
“But he loves to garden and he still does that independently,” Lori says. “Because he has the green thumb and I do not.”
Keeping Your Loved One Safe and Comfortable
Jenn Henry, 48, cares for her 55-year-old wife, Leslie, who was diagnosed with early-onset Alzheimer’s disease in early 2023. Jenn asks herself two questions every day: Is Leslie happy? Is Leslie safe? And if she can answer yes to both, “Then it’s a successful day.”
The happy part often comes easily.
“She’s always loved animals, and we have two dogs,” Jenn says. “But she really, really loves animals now. And it’s sunny today, so we’re going to the zoo.”
Jenn has made a few changes around the house to make things safer. For example, after their puppy got out and nipped a neighbor, she installed a latch at the top of their front door. It’s a simple metal bar, but it’s up high and a little too complicated for Leslie to use.
Leslie also wears a lanyard with an Apple AirTag, a small Bluetooth device designed to keep track of things like keys, wallets, and suitcases. And unlike when the couple first started dating, they avoid packed places.
“Last summer, we went to a big concert, and she got really scared when we were separated by only two or three people,” Jenn says. “At that point, I knew large crowds were a no-go.”
People in the early or moderate stages of dementia can often tell you when they're upset, as Leslie did when she yelled out Jenn’s name in the crowd. But someone with more advanced disease may not be able to communicate their needs clearly.
If that’s the case with your loved one, here are some things Amjad suggests you consider:
- What types of things made your loved one uncomfortable in the past?
- Do they have other health problems, such as arthritis or heartburn?
- Do they have a history of constipation or trouble controlling their bladder?
- Do you notice nonverbal cues of discomfort, like a frown or a hand grab?
And if you’re doing a lot of the same activities or have a similar daily routine, Amjad says, pay attention to how you feel. Are you too hot or too cold? Are you hungry or thirsty? Do you need to go to the bathroom? If so, maybe your loved one feels the same.
Create a Calm Environment
The brain of someone with dementia can’t filter things out the way it used to, Amjad says. This often means lights, sounds, or other things that may not bother you may distract or distress your loved one.
Try your best to simplify the environment as much as possible, Amjad says, especially in the evening for those who sundown. Things you can do include:
- Keep noise or lights low.
- Play music that your loved one likes.
- Keep comfort items around, like old photos.
- Clear clutter from the walls or other spaces.
- Build in breaks if visitors stop by.
- Make sure your loved one has a quiet space to rest and recharge.
You can also take steps outside of the home to maintain a sense of calm.
Lori and Tom still go to restaurants, but the couple dines out a little differently now. They visit familiar spots and tend to go out earlier. She’ll try to alert the staff ahead of time that someone in her party has dementia. Often, she gets a quiet corner table, away from the front door or the kitchen.
She also carries cards that she’ll slip to a waiter. They say: My partner has dementia, and I apologize in advance if he says or does something that makes you feel uncomfortable. Be patient and speak slowly.
“People are willing to be kind and accommodating to you if they know what’s going on,” Venable says.
Try to Avoid Confrontation
Ronald Migalski is a licensed clinical social worker and a psychotherapist with Northwestern Medicine Medical Group in the greater Chicago area. He helps spouses and partners of people with dementia learn how to handle conflict and when to use these skills in their daily lives.
“It’s hard to develop a new pattern of expressing emotions, managing one’s frustrations, and building tolerance and restraint,” Milgalski says. “It’s hard, but it’s not impossible.”
He has some key guidelines for avoiding arguments with someone who has dementia. First, don’t debate or engage in power struggles, as this often worsens anxiety and tension. Second, develop a “sense of pause” before you respond or take the next steps in the conversation.
Often, Lori says, she just needs to take a deep breath and answer a repetitive question like it’s the first time she’s heard it. With practice, she’s also learned to redirect conversations, which would’ve helped during the episode of paranoia that caught her off guard.
“What I should have done is say something like, ‘OK, I can see that you’re upset right now, but I need to get dinner started,’ or, ‘I need to go walk the dog. Let’s pick this conversation back up in a few minutes,’ ” Venable says. “Chances are, he probably would have forgotten all about it.”
Create a Strong Support Network
Jenn leans heavily on her faith. And along with meditation and prayer, she’s active in a support group for female spouses of people with early-onset Alzheimer’s disease. The group has been a “godsend” and gives her a sense of community and connection.
“It feels isolating and debilitating when you think you’re the only one going through something so earth-shattering,” she says. “But you are not alone. So, even if you’re an introvert, try to muster the courage to go out and find a support group.”
Lori sees a therapist, and both she and Tom belong to support groups. She’s also a founding member of Dementia Friendly Saline, a nonprofit in Saline, MI, that provides education and events for people with memory loss and their loved ones, including dementia-friendly movies, festivals, and other meetups.
When it comes to their regular memory cafe, Tom often leads events where he tells stories, shares jokes, or plays some of his favorite music for the group.
“He used to be a professor, and he still likes being center stage and having the microphone,” Lori says.
The two also decided early on to share Tom’s diagnosis with nearby neighbors who know to call or text Lori if they’re concerned; like if they see Tom walking around the block without shoes or dressed inappropriately.
“I feel like everybody is looking out for us,” Lori says. “And it helps me feel a little less alone.”
If you need more support, ask your loved one’s dementia care team to connect you with local services or groups. You may find other resources through the Alzheimer’s Association, Facebook groups, or Area Agencies on Aging.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Lori Venable, 62, dementia advocate, Ann Arbor, MI.
Jenn Henry, 48, dementia advocate, Willis, MI.
Halima Amjad, MD, PhD, MPH, dementia specialist, Johns Hopkins Memory and Alzheimer’s Treatment Center; assistant professor of medicine, Johns Hopkins University School of Medicine.
Ron Migalski, licensed clinical social worker; psychotherapist, Northwestern Medicine Medical Group, Greater Chicago Area.
