These expert tips can help you understand what your loved one is going through — and make life a little easier for both of you.
Caregiving requires time, dedication, and strength in any situation. But taking care of a loved one with dementia can be particularly challenging.
There are 16.7 million people who care for folks with dementia, according to the Alzheimer’s Association. They often spend more hours in the role each week than caregivers of people with other conditions. And they spend time doing more difficult tasks.
Yet time isn’t the only concern. “One of the biggest challenges is recognizing that the changes in a family member’s cognition or behavior are due to the disease, not things they’re doing because they’re intentionally angry, agitated, or forgetful,” says Brian D. Carpenter, Ph.D. He’s a professor of psychological and brain sciences at Washington University in St. Louis. His research focuses on family relationships in late life.
“The disease is responsible for causing many changes in behavior,” he says. “And it’s easy for a caregiver to forget that the disease is changing how their brain works.”
Tasks that were simple and routine for your loved one become more difficult and challenging. “You need to learn to be patient with the new way of interacting,” Carpenter says. Here are four strategies that can help.
Turn to the experts
Good information about dementia — and strong support from doctors and others with similar experiences — is super important. Start with your loved one’s care team, of course. But you can also gather helpful information from these sources:
- Alzheimer’s and Dementia Caregiver Center, from the Alzheimer’s Association
- National Alliance for Caregiving
- National Institute on Aging
- Dementia Guide Expert for Families, a free app developed by the University of Illinois
And no matter how much you know, joining a support group can be incredibly helpful. Meeting people in a similar situation can decrease your feelings of isolation and loneliness, says Valerie Gruss, Ph.D. She’s a biobehavioral health science expert at the University of Illinois at Chicago. “Caregivers may feel reduced stress and burden and an increased sense of well-being through being involved in the group.”
You can join an online group or an in-person one. These resources can help you find a match:
- alzconnected.org, operated by the Alzheimer’s Association
- Family Caregiver Alliance
Stay strong
Take care of your own health. Make sure you get enough sleep, eat well, take a break from time to time, and maintain social networks. Keep up with your regular health checkups and let your provider know if you’re struggling physically or mentally. Get the help you need to stay healthy.
Find meaning in your work
As a caregiver, you need to find your own personal meaning for what you do, Carpenter says. Develop ways to reinforce your understanding that caring for your loved one makes a difference. A couple of possibilities:
- Volunteer. You’re already a super helper. Volunteering can recharge your energy, connect you with others, and give you a powerful sense of purpose.
- Move more. Physical activity is great for your mind — and your spirit. For example, going out for a jog can help you clear your head and let go of the stress of the day. Not enough time to work out? Try a 12-minute exercise “snack,” which can bring big benefits.
Take time for yourself
Learn something you’ve always wanted to learn. Sign up for an online class to study a language, or pick up an old skill that you’ve neglected for years. Or get creative — studies show that engaging in any kind of art can boost your mood, always a good thing for a caregiver. Or just spend some time reading a book or streaming that series everyone is talking about.
“It’s essential for caregivers to make time for themselves, maintain their own interests and activities, and spend time away from the caregiving role from time to time,” says Carpenter. “Caregiving is a marathon, not a sprint. Pace yourself — for the best care for you and your loved one.”
Additional sources
Alzheimer’s overview: Alzheimer’s Association
Caregiver statistics: Family Caregiver Alliance
Research on older volunteers: University of Maine
Exercise and sense of purpose study: Circulation
