Respite Care: How to Give Yourself the Caregiving Break You Need

Learn what services are available to help, such as volunteers, day programs and aides

Kim Painter,

AARP

Comments

En español

Published September 22, 2017

/ Updated March 19, 2024

Getty Images

In this story

What is respite care • Available care • Paying for care • Finding care

If you care for a loved one with health problems, dementia or disabilities, you could probably use some breaks to manage your own health and personal business, or just to get time to yourself. Health professionals call that “respite.”

But chances are, you aren’t getting the respite you’d like. While nearly 4 in 10 family caregivers want respite services, just 14 percent receive them, according to “Respite Services: A Critical Support for Family Caregivers,” a 2024 report from the AARP Public Policy Institute.

That gap comes with a price, says Jason Resendez, president and CEO of the National Alliance for Caregiving. “Caregiving has consequences,” he says. Caregiver surveys show that “the levels of emotional distress that caregivers experience is really high.” Many caregivers say their health has suffered, and more than one-third say their finances have, says Resendez.

“Respite may not be a silver bullet,” but it can help, he notes.

Some programs and policies have improved access to respite care in recent years, says Heather Young, an associate director of the Family Caregiving Institute at the University of California, Davis. But both Resendez and Young say that families often don’t know about the help available.

So here’s what you need to know.

What type of respite care is available?

Some services come to your home to provide you with a few hours’ respite, while others can take your loved one for a few hours a day, an occasional overnight or longer.

1. Volunteers. Whether it’s a family member, a neighbor or friend, or a volunteer from a faith group or service organization, this kind of help can be welcome — and free. But it has limits, Young says. You or your loved one might not be comfortable with a volunteer you’ve never met. And it can be difficult to find people capable of handling the needs of someone with advanced dementia or other intense challenges. “I hear a lot of caregivers saying that that’s not really the best option for them,” she says.

2. Home aides. A home health aide, hired directly or through an agency, can be scheduled regularly to help with dressing, bathing, toileting and eating. It costs a median of $33 an hour, or as much as $6,292 per month, according to Genworth’s Cost of Care Survey 2023. An aide, or companion, who cooks, cleans and runs errands costs slightly less. Typically, aides won’t come for fewer than four hours a day, Young cautions.

3. Adult day programs. Basic adult day care programs offer supervised activities such as meals, snacks and some assistance for several hours a day outside the home. These programs can be a great social outlet for people who don’t need frequent hands-on nursing care, Young says.

For people with more intense needs, such as those with advanced dementia or complex medical routines, there are adult day health programs that, for a higher fee, can provide skilled nursing care and services like speech and occupational therapy. The daily median cost of adult day health programs is $95, according to Genworth. Young says programs with health services generally cost twice as much as basic programs. Unfortunately, day health programs aren’t available in every community.

4. In-patient stays. If you have to leave town, your loved one might need to stay in a hospital, hospice or nursing home for a few days. A semiprivate nursing home room costs a median of $285 a day, Genworth says.

5. Emergency respite care. If you suddenly get sick yourself or have another crisis, you may be able to arrange emergency respite care. That might mean having aides come to your home or moving your loved one elsewhere for anywhere from an hour to several weeks, according to the ARCH National Respite Network and Resource Center. But, the center says, these services can be difficult to find and funding for them is ”extremely limited” in most states.

Who pays for respite services?

You may have to pay out of pocket. But there are other sources, Young and Resendez say. Among them:

1. Medicare. Original Medicare covers respite care only when your loved one is enrolled in hospice. Then it will cover up to five days at a time in an approved facility, such as a nursing home or hospital, with a 5 percent copay.

However, Medicare Advantage plans are increasingly covering broader respite services, and Medicare is studying a dementia care program that would increase caregiver access to respite.

2. Medicaid. Most states cover respite care though programs meant to help older adults stay in their homes. Income limits apply, and eligibility and coverage amounts vary widely. Some states are experimenting with additional options, including allowing caregivers to pay other family members to provide respite.

3. Department of Veterans Affairs. The VA covers in-home care, including respite services, for former service members. It also covers up to 30 days a year of respite nursing home care.

4. Other government programs. The Lifespan Respite Care Program sends money to state agencies that support respite programs and, in some cases, provide vouchers caregivers can spend on respite care. The National Family Caregiver Support Program sends money to states and territories that can then go to local groups providing respite services. The American Rescue Plan also gave states the option of using some money for caregiver respite. One example: In Maine, family caregivers are getting grants of up to $5,171 to pay for respite and other services in a program funded through the fall of 2024.

Despite these options, affordability remains a barrier for many families, Young says. “People who have a lot of money are fine because they can afford it out of pocket. But there’s a very large group of people in the middle, who don’t qualify for support and also don’t have any extra.”

Where can I find respite care services?

Respite services aren’t evenly distributed around the country, Young says. So it can take some work to find what’s available near you. Ideally, she says, you should start looking before you need help. That way you can get a feel for what’s available in your community, she says, and get on any waiting lists.

Among places to look:

Area agencies on aging. Young suggests starting here. These are government or nonprofit groups that assist older adults in every part of the country. They will know about funding sources, volunteer programs, care agencies and facilities in your area. You can find your local agency at the Eldercare Locator or by calling 800-677-1116.
The ARCH National Respite Network and Resource Center has links to respite providers around the country.
Respite coalitions. Organizations in many states advocate for people with disabilities and chronic conditions, along with their care partners, and are a possible source of training and respite vouchers.
The National Adult Day Services Association allows you to search for a center near you.
The Alzheimer’s Association. Check with your local chapter for information on respite care for dementia patients. Groups focused on other diseases and disorders can offer similar help.
Volunteer groups, including Elder Helpers, AmeriCorps Seniors and local Interfaith Caregivers groups, can find local people willing to visit your loved one and help with household chores. Your area agency on aging should know about groups near you, Young says.
Calendars to schedule family and friends. If you are relying on volunteers, services like Lotsa Helping Hands and CareCalendar can help you sign up and create a schedule for family members, friends and neighbors willing to help.

Editor's note: This article, originally published in 2017, has been updated with new information.

Kim Painter is a contributing writer who specializes in health and psychology. She frequently writes for AARP's Staying Sharp and previously worked as a health reporter and columnist at USA Today.