9 Caregivers Share 14 Tips for Looking After Someone With Alzheimer's
Jordan Moss
An Alzheimer’s disease diagnosis isn’t just devastating for the person with the condition. Many people will end up serving as caregivers for loved ones with Alzheimer’s, which can be incredibly isolating and life-altering.
We spoke with several Alzheimer’s caregivers for their best advice on how to look after someone with the disease—and how to care for yourself in the process too.
1. Try to be as patient as you can with your loved one.
Alzheimer’s disease is notorious for tragically stealing a person’s memory. No one could blame you for feeling awful as this affects your loved one. It’s also normal if sometimes you get frustrated about it, but taking that frustration out on your loved one won’t help.
Amy L.’s father, Art, was diagnosed with Alzheimer’s disease years after he first started developing signs of the condition. At first, she and her family tried to chalk Art’s forgetfulness up to him joking around as part of his usual goofy nature. But after Art’s diagnosis, Amy committed to showing her father the same patience she showed the kindergarteners she taught.
Art would often forget where they were headed in the time it took to go from their house to the car, Amy says. “I wouldn’t say, ‘Don’t you remember?’ Instead, I always answered him as if we hadn’t talked about it before,” she tells SELF. “I started thinking about how I would deal with a child who asked a lot of questions. You have to have patience because you know they just don’t get it.”
2. Don’t waste energy reminding them that they’ve learned something before.
Amy is onto something: Trying to make a person with Alzheimer’s remember that they once knew something can just lead to a lot of frustration on both ends. Kim B.’s husband, Jeff, was diagnosed with Alzheimer’s in 2016 and is still in the earlier stages of the disease. Kim has noticed that Jeff can have trouble remembering recent conversations. “I’ll say, ‘We talked about this,’ and he’ll say, ‘No, we didn’t,’” Kim tells SELF. “I found it’s just best to move on. We have to live in our world but also know that they can’t come out of their world cognitively. We need to meet them in theirs.”
That’s not to say you can’t kindly try to help them remember things that would make them happy. Compiling something like a memory box may help a person with Alzheimer’s remember the past. But reminding them that they once knew something—or asking if they remember when they clearly don’t—isn’t the same thing.
3. Keep things simple so they’re easier for your loved one to understand.
Emmy G.’s mother, Linda, died from complications of Alzheimer’s in 2021. Emmy told SELF that her mother was easily agitated when she entered the advanced stages of Alzheimer’s disease. As a result, Emmy tried to keep everything as simple as it could be when interacting with her mom. “I noticed that as long as it was just one-on-one with her and me, I was able to keep control of the conversation,” Emmy said. “There were a few things that I knew made her happy, like talking about our dog.”
Similarly, since Kim’s husband, Jeff, has trouble multitasking, Kim has learned that she needs to talk about one subject at a time.
4. Have go-to methods of calming them when they’re upset.
Emmy says that when her mom got confused, she tried to distract her with something very simple. “I’d point at something in the room or say, ‘Oh, it’s a sunny day today.’ Something easy and positive to keep her comfortable in her surroundings,” she says.
Amy had similar tactics with her dad, Art. “My dad said to me once, ‘Amy, I just feel like I’m going crazy,’” she says. “He started to cry.” In those kinds of situations, she often practiced breathing with him to help calm him down. “I [would sit] in front of him so I wasn’t standing over him, hold his hands, and have him breathe with me,” Amy says. “I would talk about breathing in through your nose and out through your mouth. He was focused on what I was doing, and it would help take his anxiety level down.”
Related: 15 Physical Symptoms of Anxiety That Prove It’s Not All Mental
5. Consider taking extra safety precautions.
It’s common for people with Alzheimer’s disease to wander, but that can become a safety hazard, putting them at risk of getting lost. That’s why Chris C. says that his family installed chain locks high on the exterior doors of their house while caring for his grandmother. “She couldn’t reach them and wander out of the home when we were asleep at night,” he says.
Chris says his family had a scare before deciding to install the locks. “We had an incident in which she wandered out the front door into the yard while we were asleep one night,” he says. “Luckily a passerby saw her in the yard, stopped, and woke us up.” Once installed, Chris says that his grandmother didn’t notice the locks at the top of the doors, which enabled his family to keep her safe. “The one time was enough for us to take extra precautions,” he says.
6. Know that things are constantly changing.
Many caregivers will find hacks that help support their loved one’s Alzheimer’s journey, only to find they’re not effective soon after. Sue R. cared for her grandmother and husband, who both had the disease, and found that caregiving solutions constantly changed. “I’d try something one day or with one loved one, and it worked; I’d try it the next day, and it didn’t,” she told SELF.
One was helping her grandmother get to the bathroom in her condo. “The door to the bathroom was literally across from the door to her bedroom,” Sue says. But her grandmother kept getting lost while trying to find it. “We tried keeping the light on. The first night, it worked perfectly. The second night—she saw the light on, got up, went into the bathroom, turned off the light, [and] went back to bed.”
Sue says she and her family members also tried to put up baby gates to keep her grandmother from wandering to other parts of her condo at night. “These worked perfectly during the day. At night, they made her angry,” she says.
Sue says that caregiving for a loved one with Alzheimer’s disease is a “perfectly imperfect journey,” adding, “it’s reasonable we’ll struggle. We didn’t go to school for this.”
7. Use aids to help them keep track of time.
People with dementia can have difficulty keeping track of details like what time and day it is. “Grammy had a tendency to take a nap and then wake up and think it was a new day,” Cecelia N. tells SELF of her grandmother. So her family installed two clocks on the wall. One told the date; the other told the time and showed a sun or moon to help distinguish night from day. “Those types of things really helped,” she says.
8. Build in more time for chores and self-care tasks than your loved one would have needed before.
Chores and self-care can be a challenge for people with Alzheimer’s. Cecelia cites taking a shower as an example. It might seem simple, but there are actually so many components, from turning the knob on the faucet, to shampooing and conditioning, to picking up the soap and putting it on a washcloth. This can make something as seemingly easy as taking a shower really difficult and time-consuming for someone with Alzheimer’s. (Or, if you’re helping them, it can take longer than you would expect.)
Try to help with some of these duties so life is easier for your loved one. Cecelia and her family helped her grandmother by doing her laundry, or cooking her meals ahead of time and putting them in the fridge so they just had to be warmed up when she was hungry. “The days are long, but their care is so important,” Cecelia says.
9. Accommodate (or anticipate) their requests if you can, even if you don’t understand them.
Jeff used to maintain a website and blog about living with Alzheimer’s but wanted Kim to review his posts before he published them. That often meant she had a bunch of tasks to complete as soon as she got home from work. “It was a lot and was difficult to do, but I know it was very difficult for him,” she says.
On a related note, Amy’s father often liked to write things down to jog his memory. “It made him feel better,” she says. “I started keeping notepads and pens handy so he could write down what was important to him. Often what he wrote down made no sense, but I wanted to do whatever I could to help.”
10. Try to make peace with your new normal.
While you may remember family traditions, your loved one with Alzheimer’s may not—and caregivers say it’s important to try to meet them where they’re at. Jennifer F. tells SELF that she learned to lower her expectations and make peace with a “new normal” while caring for her mother with Alzheimer’s disease.
“My mom always did Christmas big,” she says. “After my dad died, I wanted to do the same for her, not understanding that it was likely far too overwhelming.” Jennifer says that her mom ended up anxious, which made Jennifer feel stressed. “It took too long to understand that simple was all she could handle,” she says.
During their last Christmas together, Jennifer and her mom celebrated together on December 23. “I picked her up, put her in my car, and drove around the assisted living memory care community to their dining room,” she says. “They had excellent food, beautiful decorations, and happy people surrounding us. We had a nice lunch, and I had one very simple gift for her.”
Jennifer says her mother was dressed in a summery outfit that included a T-shirt with a sunflower on it, which was a departure from what she would have worn to a holiday event in the past. “We had a very nice hour, and then I returned her to her home,” Jennifer says.
Jennifer says she didn’t feel guilty that her mom wasn’t with her family on Christmas Eve or Christmas Day. “She didn’t know it was Christmas, so she didn’t feel left out, and I knew our activities were too much for her, and she wouldn’t have been happy or comfortable had she been with us,” Jennifer says. “Adapting our holiday celebration to what she could handle was the right thing to do.”
11. Allow yourself to think—and talk—about things other than Alzheimer’s disease.
Being a caregiver can be an all-consuming task, making it hard to think of anything else. But Karen S. tells SELF that she realized she was neglecting other relationships that were important to her when her son pointed out that she constantly spoke about her husband Anthony’s diagnosis.
“I [lost] the ability to have normal, everyday conversations with loved ones and friends,” she says. “One day, my son said to me, ‘I just want my mom back. I miss the conversations we used to have.’ He was absolutely right.” Karen says her son’s concern was impactful and made her realize that other family members also needed to have a relationship with her that didn’t revolve around Alzheimer’s disease.
“Since then, I’ve made a conscious effort to shift my focus during conversations with loved ones,” she says. “I try to be fully engaged and talk about them—their lives, their joys, their challenges—rather than always centering our discussions on my situation. It’s not always easy, but it’s helped me reconnect with the people I love and maintain relationships that are about more than just caregiving.”
12. Don’t be afraid to ask for help.
When Art’s physical condition deteriorated, he ended up needing hospitalization. “I couldn’t lift him from a bed if I needed to,” Amy says. “It’s important to allow yourself to not feel like you’re giving up when you ask for medical help…. Sometimes it’s what’s best for them.”
13. Build a support network.
When you’re dealing with such an emotionally fraught situation, you might want to carry the load yourself. Don’t. “When your loved one is diagnosed with Alzheimer’s disease or a related dementia, you must take steps to build a web of support for yourself and your loved one,” Katie Brandt, director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit, tells SELF. That means not only finding a team of medical professionals but connecting with others in the Alzheimer’s disease community, she says.
Nearly everyone we talked to offered up this advice. Cecelia says she only discovered the Alzheimer's Association after her grandmother’s death and wishes she had known about it sooner. “We kind of stumbled our way through, and it was hard at times,” she says. Emmy also says she found a lot of help and support through the Alzheimer’s Foundation of America.
14. Remember that you deserve care too.
Kim has gotten very close to having what she describes as a mental breakdown while trying to care for Jeff. “I’m just now taking care of myself,” she says. “I went to the doctor and found that I gained some weight, my blood pressure is up, and I’m pre-diabetic. So many caregivers put themselves aside. I’m trying to find balance.”
Emmy said she joined a running group, trained to become a yoga teacher, and wrote a blog about maintaining a healthy lifestyle while caring for her mom. “Making sure that you are emotionally and physically taking care of yourself as the caretaker is incredibly important,” Emmy says. “I had guilt that I wasn’t doing enough, but it’s important to realize that you can do what you can when you can. That’s what my mom would have wanted.”
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Originally Appeared on Self
