A Caregiver’s Guide to Understanding Dementia

When it comes to understanding dementia, the first symptoms that probably come to mind are memory loss and confused thinking. But personality shifts and behavior changes can be just as common.

“As Alzheimer’s and other dementias progress, a person may exhibit anxiety, agitation, and in some cases aggression,” says Monica Moreno, senior director of care and support at the Alzheimer’s Association. “It is important for caregivers and others to recognize that these are not intentional. They are caused by the disease.”

Dementia-related behaviors and outbursts are forms of communication, says Moreno. And they’re often brought on by minor things (think: a surprise visitor or fatigue). “As it becomes more difficult to communicate their thoughts and feelings, the person may act out in unexpected ways,” says Moreno.

Other behavior changes can also show up, such as:

In other words, a loved one with dementia will begin to act differently from their old self. It can be confusing, frustrating, and upsetting to family members and friends. If you have someone with dementia in your life, these strategies can help make it easier to communicate and connect with them.

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Slow down. Use short, simple sentences. And make eye contact when you speak, Moreno advises. “Ask 1 question at a time. And give the person time to process and respond before continuing.” 

Another way to make conversations easier: Use multiple choice rather than fill in the blank when asking questions, says Rebecca Axline, LCSW. Axline is a supervising clinical social worker at the Houston Methodist Neurological Institute in Texas. For example, you might normally ask, “What do you want for lunch?” Instead ask, “Would you like a tuna sandwich or grilled cheese?” suggests Axline. “When you do this, you’re giving them power and a sense of ownership.” That’s less overwhelming to them.

They don’t have to be complicated. You might: 

Whatever the activity, it’s important to organize it ahead of time.

As dementia progresses, people often can’t start new activities, Axline says. “The executive functioning part of the brain isn’t working as it should be.” That’s why people with dementia often shadow their caregiver: They don’t know what to do with themselves. Knowing what’s coming next helps them feel more calm, secure, and in control. And that can help ease feelings of anxiety and frustration.

Arguing over things such as facts or abilities will only create problems, not solutions. “When you say no, that’s like a stop sign. It shuts everything down,” Axline explains. “Instead, go into the moment with the person. Even if you know it’s farcical.”

For example, say your loved one wants to drive but can’t anymore. You might make an emotional connection by saying, “We’re going to do Driving Miss Daisy today” if that’s a movie they enjoyed, Axline suggests. Or maybe they insist they dated a famous actor in a movie you’re watching together. Don’t roll your eyes — roll with it. Try using responses such as, “Yes, and what was that like?”

Loud noises and distractions can cause fear, anger, or confusion in people with dementia. So try to minimize those things. Some ideas:

“Being kind, gentle, and relaxed can go a long way toward defusing many dementia-related behaviors,” Moreno says.

Wandering is very common for people who have dementia. “While the term ‘wandering’ may suggest aimless movement, individuals who wander have a destination and a purpose,” says Moreno. They may be hungry or thirsty. Or they may need to use the bathroom. But they can become lost along the way, even if they’re in a familiar place.

Think about putting in a system that sounds a chime when the person leaves a room or their home on their own. You can also use GPS trackers. They come in various forms, including watches, necklaces, keychains, and tags that can be attached to clothing. Or use a smartphone app to find your loved one if they wander off. It’s also wise to get the person an ID bracelet with your contact information on it. That way, if someone else finds your loved one first, they’ll be able to reach you.

To reduce agitation and wandering, set a daily routine that offers structure and predictability. Make sure you meet your loved one’s basic needs within that routine. Schedule regular meals, trips to the bathroom, physical movement, and the like. “It’s saying, ‘This is our reality. Let’s make the most of it,’” Axline says. “It makes it easier for you. And it lends a sense of comfort for loved ones.”

When caring for someone with dementia, frustration can easily build up. Try not to show it. If you feel upset, give yourself a brief timeout. Take deep breaths. Count to 10 and back down to 1 again. Or walk into a different room for a few moments. Remind yourself that getting upset won’t do either of you any good. In fact, it may even rile up your loved one and make things worse. 

Caregiver burnout is very common. A 2020 report found that more than a third of caregivers say they have high emotional stress. It’s important to care for yourself too. Remember, if you’re on edge and wiped out, you won’t be in any shape to care for someone else.

“Find people to give you a break so you’re not doing this 24/7,” says Axline. Ask for help from family members and friends. Or look into hiring respite care. It’s also a good idea to talk to other dementia caregivers or join a support group. Knowing you’re not alone can make a big difference in easing your stress. Plus, you might learn some helpful strategies from fellow caregivers.

A digital health management app such as Wellframe can help connect you with the support and services you need. Many health plans offer Wellframe to their members for free. To find out if you have Wellframe, reach out to your health plan.

Understanding dementia is difficult. It’s perfectly normal to wish that things were different. Sadly, that won’t change anything. So try to accept your new reality and make the most of it. “Instead of looking at the person and seeing what’s gone, focus on what’s still there,” says Axline. Dementia caregivers who rely on acceptance and coping strategies that focus on problem-solving have been shown to have better mental health.