What Is Respite Care? How You and Your Family Can Benefit
Professional respite care provides your loved one with a trained caregiver while offering you, as the family caregiver, a much-needed break. Learn why respite care is so important for a long-term care plan—and the options available to you.
It’s morning, and the first thing on your mind is getting your 85-year-old mom out of bed and ready for the day. She is living with dementia and was up several times during the night (and so were you). You need to help her get ready for a doctor’s appointment, at which you’re planning to ask about her worsening anxiety.
As your mother’s primary caregiver, this morning routine is just one of the many responsibilities you have. In fact, you had to give up your job to care for her full time. You help her bathe and get dressed, prepare her breakfast, organize her medicines (and see that she takes them), oversee the bills and the housecleaning, and more. As you do the dishes after breakfast, you think about what’s lined up for the day: an appointment with the doctor, preparing lunch and dinner, doing laundry, making sure you keep Mom’s mind active with easy crossword puzzles and card games, taking a walk together, visiting a neighbor, and so on. Each day naturally revolves around your mother’s needs. When it’s time to turn in at night, you’re exhausted, your eyes burn, and you’ve got FOMO (fear of missing out) from that friend on social media who always seems to be on vacation. You can’t help but think, I could really use a break.
If this sounds like you, what you need is called respite care, a structured plan that provides care and support for your loved one while giving you time off to relax, rest, and recharge. Read on to find out how respite care works, where to find it, and how to take advantage of it—for your own well-being and the well-being of your loved one.
What Is Respite Care and When Is It Most Helpful?
It’s estimated that nearly 42 million Americans provide unpaid care for a family member or loved one age 50 or older. Whether that person is living with a chronic condition or illness, recovering from a major health event, or experiencing cognitive or mobility challenges, being their primary caregiver is hard work. “Being a family caregiver is not just physically tiring,” says Liz Sudberry, Director of Client Experience at TheKey in Cincinnati, Ohio. “It’s emotionally tiring.” Sometimes you just need time off.
That’s where respite care comes in. A common introduction to professional caregiving, respite care serves a dual purpose: You get a break from your daily caregiving activities to relax and recharge, make time to exercise, run errands, visit with friends, catch up on sleep, or even go on a short vacation. And your loved one receives companionship and assistance from a trained professional caregiver. The frequency and duration of respite care visits can be determined by your needs as well as those of your loved one. It can last for a few hours or days—say, one weekend a month—and may be organized around specific activities (memory care/cognitive stimulation, bathing, and dressing) or time periods, such as certain afternoon hours. And you can schedule respite care in advance or use it on an emergency basis.
Respite care is a vital part of long-term care because when caregivers don’t have regular breaks, their health and well-being can suffer. Ina report by AARP and the National Alliance for Caregiving, 23 percent of caregivers said that their responsibilities had made their health worse. And when a family caregiver is feeling overwhelmed and experiencing burnout, it can impact their ability to provide consistent, quality care. Given these realities, it’s no wonder that respite care is the number-one type of care requested by family caregivers, according to Rebecca L. Utz, PhD, Professor of Sociology and Associate Dean for Research at the University of Utah in Salt Lake City.
For respite care to be most effective, research has shown that it’s helpful for caregivers to incorporate it into their care plan sooner rather than later. “One of the big myths about respite care is that you need it when you’re at the very end of your rope and totally burned out,” says Shadi Gholizadeh, PhD, MPH, Director of Memory Care at TheKey. “On the contrary, setting up respite care early on in your caregiver journey is the best way to prevent exhaustion and other health issues so you can avoid hitting the caregiver burnout stage.”
Types of Respite Care
Respite care for a family member or older adult can happen at home, an adult day care center, or a residential facility such as an assisted-living community or nursing home. The best option for you and your loved one will depend upon your situation and your loved one’s care needs.
Here’s a high-level view of the different respite care options:
|Type of Care||What It Is||Advantages||Disadvantages|
|Adult day care||A care facility outside of the home that usually provides up to 8 hours of care per day.|
• The care recipient’s day may be structured.
• Programs often include daily living activities, social interaction, exercise, various kinds of therapy, and mental stimulation.
• Long-term care insurance may cover the cost.
• Not all facilities are state licensed and regulated, which may affect the quality of care.
• It can be difficult to assess the training and skills of caregivers and aides.
• There is typically not a licensed practical or registered nurse on duty.
• A family caregiver may not feel comfortable leaving their loved one in the care of others.
• An older adult may have trouble adjusting to the changes in setting and routine.
• Care may not be particularly personalized or individualized.
• Care recipients who need incontinence support, or other higher levels of care, are not always eligible.
|Residential communities and facilities||Care facilities, such as skilled nursing facilities and assisted-living communities, that set aside beds for older adults to stay overnight, for a weekend, or longer.|
• Skilled nursing care is often available.
• A family caregiver may be able to enjoy a longer respite period.
• There may be organized activities and other ways to interact socially.
• Long-term care insurance may cover the cost.
• Skilled nursing facilities are regulated at the federal and state level, but state regulations can vary widely.
• The setting may be restrictive.
• An older adult may not like the facility, and a family caregiver may worry about leaving them there.
• Care may not be especially personalized or individualized.
• There may be long waiting lists.
• It can be very expensive.
|In-home care||Professional caregivers who come to the home and help your loved one with things such as bathing, toileting, dressing, and meal preparation, as well as mental stimulation and physical activity.|
• Length and frequency of visits can be personalized.
• A loved one feels more comfortable at home.
• Caregivers from a quality home care agency, like TheKey, will be vetted, licensed, and insured.
• Care is individualized for the recipient’s needs.
• Family caregivers can learn helpful skills from observing a professionally trained caregiver.
• Care can typically be set up quickly.
• Long-term care insurance may cover the cost.
• Depending on the frequency and duration of scheduled visits, it can be expensive.
• The care recipient might resist having a non-family member come into the home to provide care.
• Lower quality home care agencies do not always train their caregivers or vet their skills.
How to Make the Most of Respite Care
Here are six ways to help ensure that every minute of respite care counts—for both you and your loved one.
1. Acknowledge That You Deserve a Break
You may feel guilty or selfish about taking time for yourself, or you may experience a sense of failure, thinking, I should be able to do this without help! And, of course, you worry that your mom or dad might reject the idea or cope poorly with your absence. Then there’s the cost. But keep in mind that taking a break is important for your own health and well-being—and is also critical to your being able to continue in your role as a compassionate and patient family caregiver.
2. Don’t Stress About Your Loved One Getting Along with a Professional Caregiver
If you work with a high-quality home care provider that has expertise in matching caregivers and clients, they will prioritize making the best match based on personality, style, and preferences. But some people still may have worries about starting home care. To ease this concern, Liz Sudberry from TheKey says she will often ask the primary family caregiver, “What are some characteristics that your mother is most attracted to and likes in a person? Does she like a more reserved person? Does she like someone who has a good sense of humor, who enjoys music, or a person who likes to talk a lot? We try to help people think about what kind of personality would make a good companion for a loved one, so TheKey can assign a matching caregiver.”
3. Remember, There Will Be a Learning Curve as the Professional Caregiver Gets to Know Your Parent
“It’s going to take a little bit of time for the caregiver to learn all the nuances of the person’s care,” Dr. Gholizadeh says. “The way someone likes their coffee in the morning, what activities they like to do, and personal details like the water temperature they prefer for showers—all of that stuff.” That’s normal. But don’t let it stop you from trying respite care.
4. Create a Document or Binder of All of Your Loved One’s Care Requirements
This will help ease the transition from family caregiver to professional caregiver—and give you peace of mind while you recharge. A key advantage of choosing in-home care through an agency is the care assessment, which leads to a personalized care plan based on your loved one’s unique requirements and preferences. “That’s really nice because the professional caregiver coming in knows right off the bat the likes, the dislikes, the needs, how this person prefers to be supported,” Dr. Gholizadeh says. “That’s all documented. And, as the care needs change over time, that document also changes.”
5. Make a Plan for How You’ll Spend Your Time Off
Research has found that family caregivers benefit more from respite care when they plan for it in advance and take it at regular intervals and in sufficient blocks of time, says Dr. Utz. So map out exactly what you’d like to do during your respite break. Dr. Gholizadeh suggests making your goals specific, measurable, and realistic. For example, a goal like “I will take a walk around the neighborhood 20 minutes a day” is more effective than a vague goal like “I will exercise more.”
To help you plan, ask yourself:
- Are there activities I’ve always enjoyed but haven’t had time for since becoming a family caregiver?
- Are there hobbies I used to do that I’d like to get back to?
- Are there things that have religious or spiritual meaning for me that could help reduce the stress I feel from caregiving?
6. Consider Taking a Respite Vacation
These are organized trips that allow family caregivers to get away and connect with one another. For instance, No Barriers USA, which brings together people of all kinds, has a No Barriers Caregivers Program with retreats and expeditions for family caregivers as well as virtual and in-person community events. Goals include building community and providing tools that focus on self-care along with caregiving tips, advice, and support. Road Scholar, a nonprofit that has been offering educational travel adventures for adults age 50 and over for more than 45 years, provides grants of up to $1,500 to family caregivers for its programs in the U.S. and Canada. The organization covers lodging, meals, field trips, and transportation.
Honing in on whatever it is that will have the most meaning for you can help you plan a respite that is satisfying and restorative.
How Much Does Respite Care Cost?
Cost is one of the biggest concerns families have when considering respite care, and the costs are rising, according to Christina Irving, LCSW, Director of Client Services at the Family Caregiver Alliance in San Francisco. But it’s important to understand and factor in the value of respite care and the health benefits to family caregivers when looking at the cost. As reported by the 2021 Genworth Cost of Care Survey, the national median rate for a home health aide is $27 per hour, up from $24 per hour in 2020, and adult day care costs $78 per day, up from $74 in 2020. (Genworth has a useful Cost of Care tool that can help you calculate the cost of care in your area.)
Many older Americans pay out of pocket or use long-term care insurance for adult day care and home care, but there are resources that can help you. ARCH National Respite Network and Resource Center, a federally funded national nonprofit focused on respite care and family support, provides detailed options for ways to pay for care. Overall, there are a number of resources you may want to check out, including:
- Dependent care flexible spending accounts: These accounts can be used to help mitigate costs and may be tax deductible. Check with your employer’s human resources department for more information.
- Medicare Advantage: Some of these plans have supplemental benefits that cover adult day care and respite. They may also cover care in the home, transportation to appointments, meal delivery, and home safety modifications.
- VA Caregiver Support Program: As part of its mission to promote the health and well-being of family caregivers, this program helps caregivers of eligible and covered vets who are enrolled in the VA healthcare system.
- National Council on Aging BenefitsCheckUp: Enter your zip code and find local benefits programs that can help pay for respite care, healthcare, medications, and more.
- Consult with a professional: If you are considering home care, you can work with a professional, such as a Geriatric Care Manager, who can suggest funding options to consider if you are paying out of pocket. The arrangements can vary widely and having an expert weigh in with suggestions can be very helpful, says Dr. Gholizadeh.
- Grants: There are public benefits, community resources, or short-term respite grants to help defray the costs. Tip: Explore these options early on in your loved one’s home care journey. (Check the Family Caregiver Alliance’s Family Caregiver Services by State for information on short-term grants in your area.) “There are usually applications, waiting periods, and eligibility requirements. And there may be wait lists,” Irving says. She advises giving yourself three to six months to gather any documentation you might need, understand your eligibility, fill out the application, have it approved (or rejected), and then start respite care.
If you have limited resources/assets, some states have cash assistance programs that let you hire someone of your choosing for in-home care. For information, use the Eldercare Locator, which is connected to the Area Agencies on Aging. For free or low-cost caregiving resources, check your state or territory health department’s offerings. Faith-based organizations with caregiving ministries, community groups, and friends and family may also be able to provide respite support.
How Can I Find Respite Care Near Me?
Here are resources to help you find respite care in your area:
- TheKey: Find a Location
- ARCH National Respite Network and Resource Center
- Your State Lifespan Respite Program or State Respite Coalition
Respite Planning Tools for Caregivers
These nine steps, adapted from information from the ARCH National Respite Network and Resource Center, can help you get the respite break you deserve.
Step 1: Understand What Respite Care Is
Respite care can provide a much-needed break from your family caregiving responsibilities. By taking a time-out, you will become less stressed, better rested, and more capable of handling long-term caregiving responsibilities.
Step 2: Know What’s Available
Respite care may be home-based or provided outside the home, such as by a professional caregiver or an adult day care center.
Step 3: Find Respite Care Near You
Use these resources to look for options:
- TheKey: Find a Location
- ARCH National Respite Network and Resource Center (respite resources nationwide)
- Your State Lifespan Respite Program or State Respite Coalition
- For free or low-cost caregiving resources, check your state or territory health department offerings.
- Faith-based organizations with caregiving ministries and community groups may also be able to provide respite support.
Step 4: Figure Out How You’ll Pay for Respite Care
- Visit the Eldercare Locator, which offers connections to the Area Agencies on Aging, to learn about respite funding options.
- If your loved one is a veteran, contact the VA Caregiver Support Program.
- Consider a Medicare Advantage plan.
- Some adult day care programs provide financial support by offering sliding fee scales and payment plans—be sure to ask about them.
- For help with the cost of home care, consult with a professional, such as a Geriatric Care Manager, to learn more about your funding options.
Step 5: Decide What’s Right for You and Your Loved One
Sit down with all family members who are involved in your loved one’s life and care, such as your siblings, to talk about how you would use respite care. Create a list of questions to ask potential providers and make a list of the needs of the person who will receive care.
Step 6: Contact Potential Providers
You’ll need to find out how their workers are selected and trained. Ask questions, including:
- Are the providers licensed if required? Check to see what the licensing requirements are in your state and county.
- What tasks and care can be provided, and would it include specialized care for those with dementia, including Alzheimer’s if needed?
- How does the scheduling work? If it’s a program outside the home, are there set hours? For in-home care, will your loved one have the same caregiver for a certain number of hours every day, for instance?
- How is your loved one matched with a caregiver? What is the process?
- What are the fees and how are they paid?
- How do they handle emergencies and problems?
- Can they provide references?
- Can you tour the facility (if care will be outside the home)?
Step 7: Prepare Your Older Adult for Respite Care
Respite care represents a big change, and preparing your loved one can help ensure it works out well.
- Set aside time far in advance to introduce the idea and to talk about and plan how it will work.
- Use positive language when you talk about respite care. Our guide on How to Get a Loved One On Board with Home Care can help walk you through this process.
- Include familiar routines and activities in the plan to help make your loved one feel more comfortable with the experience.
Step 8: Make the Most of Your Respite
These tips can help your respite breaks feel satisfying and restorative.
- Use respite early. Don’t wait until you are exhausted, overwhelmed, and stressed. You will most likely benefit more from respite care if you start it before you feel overwhelmed or burned out.
- Use it often. Take a break at least once a week, if you can afford to do so, to help maintain your mental and physical health.
- Plan your time. Think carefully about what will be meaningful for you and will refresh your energy and spirits. It could be getting together with friends, exercising, doing a hobby you enjoy, going away overnight or for a weekend, or simply getting some rest.
Step 9: Create a Resource for Respite Providers
Make sure providers understand that you are the main point of contact for your loved one and provide the following:
- Your contact information
- Your family member’s likes and dislikes
- Full information about medications, daily living needs, and special diets
- An overview of a normal day
- Suggestions for how to address challenging behavioral expressions
A reputable home care agency like TheKey will gather this information as part of their assessment.
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