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How to care for someone with Alzheimer’s disease (while still caring for yourself)
The effects of Alzheimer’s are ever-changing, which means you, too, must constantly adapt. These tips can help you navigate each step of the way.
Alzheimer’s disease isn’t a condition that remains the same. And the changes it brings can make caring for someone with the disease difficult.
You may feel frustrated when they repeat questions. You may find it hard to keep them calm when they become frustrated. And your heart may break when they forget your name or even who you are.1 All the while, you’re mourning the relationship you once had.
More than a quarter of Americans care for someone with Alzheimer’s disease. That’s more than ever before.2 The path may never be easy. But there are ways to make it more manageable for both of you. You can try these tips below no matter where you are in the Alzheimer’s journey.
Caring for your own mental health is critical. If you need extra support, resources from Optum can help. Here’s how to get started.
Stay on schedule
“Consistency is key. That’s why it’s important to stick to a daily schedule,” says Maria Dibner, MD. She’s a staff neurologist at Reliant Medical Group, part of Optum, in Worcester, Massachusetts.
“A routine offers structure. This is helpful for the person with Alzheimer’s,” Dr. Dibner says. And it becomes even more critical as the disease progresses.3
For early-stage patients: Create a daily routine that includes quality sleep and engagement with others. Invite your loved one’s friends over for lunch or do a puzzle together.4
For middle-stage patients: Routine tasks, such as getting dressed and bathing, start to be a struggle. If you know you need to get out of the house, plan on more time to help them get ready. Less rushing is always a good thing.
For late-stage patients: Set a schedule around your loved one’s needs. For example, keep track of when they get hungry and when they go to the bathroom each day. You can plan a routine for them based on their behaviors.5
“Having a schedule also lets you work in some time for yourself,” Dr. Dibner says. Set aside 15 minutes for a solo coffee break. Or give yourself an hour to relax and read a book.
Have empathy and patience
Your loved one might feel embarrassed or frustrated that they can’t care for themselves the way they used to. Just as you had to come to terms with their new capabilities, so do they. Try to react with compassion and patience.
For early-stage patients: Create a “help signal.” Pick a cue to make sure the person you're caring for is OK with you stepping in to help them. If they're having trouble with a job, you might ask them if they would like you to help. But first assume that the person can complete the job on their own. Step in only when they have confirmed they need support.4
For middle-stage patients: Changes in mood and behavior are common during this stage. These shifts can be some of the most distressing for families. People with Alzheimer's may have depression, anxiety and mood swings. They might also be prone to verbal outbursts and wandering. Knowing what behaviors to expect can help you reply with more empathy.3
For late-stage patients: It can be frustrating and upsetting when your loved one shouts at you. They may even say hurtful things. But for late-stage Alzheimer’s patients, shouting can be a sign that they’re in pain. So can trembling, anxiety, nervousness and sleeping issues. Try not to take those behaviors personally. They’re not intentional.5
Connecting with other caregivers who’ve been where you are can help you feel better. And you can learn what helped them get through these tougher moments. To find support groups, visit the Alzheimer’s Association.
Maximize opportunities for stimulation
Dr. Dibner says there are three major culprits that add to memory loss:
- Lack of exercise
- Lack of a social life
- Not keeping mentally active
“You want to help the person [with Alzheimer’s] get at least three hours of exercise per week,” Dr. Dibner says. Try to help them stay social. Also, give them activities to stimulate their brains, she says.
If it’s in your budget, think about hiring someone to come in for a few hours a week to play cards. Or just invite them to talk with them. “This way, they get a new activity, and you get some time to yourself,” Dr. Dibner says.
An adult day program is another great choice to expand their social circle, says Laura N. Gitlin, PhD. She’s the executive director of the AgeWell Collaboratory at Drexel University’s College of Nursing and Health Professions in Philadelphia.
“Adult day services are very helpful as they provide people living with dementia a safe place to be engaged,” she says. These centers offer activities and meals for your loved one. And you get a much-needed break.
“It’s hard to keep someone with Alzheimer’s busy all by yourself,” Dr. Dibner says. “A day program gives them a chance to be social and to talk with others.”
If you don’t know where to find home health aides or adult day programs, try the Eldercare Locator.
Outside care also comes with a price tag. Talk to their health insurance company. It may offer certain benefits for home health care. Home health care is skilled nurses and trained aides who offer care in the home. If you have trouble paying for these services, there’s help:6
- Government programs
- Program of All-Inclusive Care for the Elderly (PACE)
- Medicare and Medicaid
- State Health Insurance Assistance Program (SHIP)
- Department of Veterans Affairs
It can be frustrating if you keep asking them if they know who you are. The same goes for quizzing them about things they don’t remember. Learning how best to talk with someone with Alzheimer's is key to keeping their anxiety levels low.
If the person you’re caring for has trouble putting names to faces, introduce yourself every time you see them. You can say, “Hey mom, it’s your daughter Emily,” for example.
Your loved one may not be comfortable with you calling them “mom” or “dad” if they don’t remember who you are. Even though that may upset you, know that your loved one can still feel connected to you. Try these tips to strengthen your relationship.
For early-stage patients: If something becomes too much, just skip it. Maybe going to the grocery store has become overwhelming. Ask for their help writing the grocery list instead. It’s OK if they don’t want to shop.
For middle-stage patients: Memory issues worsen during this stage. Try to be patient. Use a calm voice when responding to repeated questions. Know that communication changes are common during this stage, too. Speak slowly and gently. Be patient if they spend a long time searching for the right word. And learn how to rely on non-verbal cues, such as gestures, sounds and facial expressions.3
For late-stage patients: Do your best to meet them where they are. For example, people with Alzheimer's may often forget to eat or find mealtimes hard. Try adding sugar to their food. You can drizzle honey on fruit. Or stir some maple syrup into their morning oatmeal. The sweetness may help them eat. Utensils getting in the way? Ditch them and serve finger foods instead.5
You’ll also likely feel overwhelmed in these situations. That’s completely normal. But it’s important that you stay aware of how the stress of caregiving impacts your health. Over time, long-term stress has been linked to conditions such as heart disease, diabetes and depression.7
Take five minutes for a mini reset. Close your eyes and imagine a peaceful place. You can also try meditation. Sit quietly and focus only on your breath. Let other thoughts just float away. Here are more ways to feel calmer in minutes.
Looking for more stress-relieving essentials? From aromatherapy to massage tools, the Optum Store has what you need. Shop now.
Make sure that your home is safe
If possible, hire an expert who can check your home for safety. This type of expert is called a geriatric social worker or geriatric nurse practitioner. They can suggest ways to update your home to be as safe as possible, Gitlin says.
Here are some easy ways to start:
- Put covers on all the electrical outlets.
- Install carpet or grip strips on the stairs to prevent falls.
- Install handrails in the showers and throughout the house where needed.
For a complete list of home safety products, visit the Optum Store.
For early-stage patients: People with Alzheimer's may still be fairly independent at this stage. Put basic home safety measures in place. Keep an eye on them to see if you need to make any adjustments.
For middle-stage patients: They may struggle to be aware of familiar places at this point. As a result, they may become prone to wandering. Install deadbolts on doors (out of sight — either up high or down low). Night-lights may also help make the home look more familiar. You can even camouflage doors by painting them the same color as nearby walls.8
For late-stage patients: Your loved one’s needs may go beyond what you can offer at home. If this happens, think about moving them into a facility that can better help them. You can work with their doctor to learn more about your options and when the time may be right.
Take time for you
Practicing self-care is essential, Gitlin says. It’s necessary for your own physical and mental health. And it also helps you be a better caregiver.
“Before burnout occurs, stay on top of your own health,” she advises. “Respite for the caregiver is critical.”
Eat healthy meals and get enough sleep. And make time for exercise, Gitlin says. “This could be walking, gardening or going to the gym,” she says.
It’s easy to let your own life fall by the wayside when you’re so focused on caring for somebody else. But don’t skip out on your own doctor’s appointments. And remember to stay in touch with friends and keep up with your hobbies.
Talking to people who can relate to your situation might help you feel less alone. There are Alzheimer’s caregiver support groups that meet in person or online. Ask your doctor about local groups. You can also check online. Or get in touch with your local chapter of the Alzheimer’s Association. Resources from Optum can help too.
Ask for help
Be prepared for when someone offers to help you, says Kenneth Hepburn, PhD. He’s a professor in the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta. Use a simple yet effective technique called “Plot and Pounce.”
Plot: Create a list of things you’re doing as a caregiver that someone else could do. That could be sitting with the person with Alzheimer’s while you take a walk in the park. Or it could be helping with some of the many tasks on your plate. There are finances to deal with, appointments to schedule and keep and medications to pick up. Maybe someone could prepare a meal for you.
Then plot some more: Who in your network of family and friends has the skills to do some of these things? “Maybe another family member could handle the finances or deal with the insurance companies,” says Hepburn. Or maybe you could teach a neighbor or friend some specific caregiving tasks you’d be comfortable delegating to them.
And pounce: When someone says to you, “You’re doing such good work, I wish I could help you,” give that person the “opportunity” you have prepared for them. Hepburn urges: “The more you can say yes to help, the better you’ll be able to focus on what matters most — loving the moments you have together.”
- National Institute on Aging. Alzheimer’s caregiving: Caring for yourself. Last reviewed May 17, 2017. Accessed August 8, 2022.
- National Alliance for Caregiving. Caregiving in the U.S. 2020. Accessed July 25, 2022.
- Alzheimer’s Association. Middle-stage caregiving. Accessed August 19, 2022.
- Alzheimer’s Association. Early-stage caregiving. Accessed August 19, 2022.
- Alzheimer’s Association. Late-stage caregiving. Accessed August 19, 2022.
- National Institute on Aging. Paying for care. Last reviewed May 1, 2017. Accessed August 8, 2022.
- American Psychological Association. How stress affects your health. Published 2013. Accessed August 19, 2022.
- Alzheimer’s Association. Wandering. Accessed August 19, 2022.
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