What Is Respite Care? Understanding Caregiver Support Options

Table of contents

1. The demands of caregiving
2. What is respite care?
   • Types of respite care
3. Who can receive respite care?
4. When should you consider respite care?
5. How respite care works
6. Benefits of respite care
7. How to find respite care services
8. How to pay for respite care
9. The 4 levels of hospice care

The demands of caregiving

Caregiving for someone who is ill can be stressful, but when that someone is in the final stages of life, caregiving takes on different challenges. Care requirements are often escalated, and the patient may require more frequent medication, special wound care and assistance with feeding and toileting. The uncertainty of when death will occur also puts emotional pressure on the caregiver.

All of this can cause caregivers to lose sleep and live in isolation and worry, which can result in depression, fatigue and anxiety, also referred to as “caregiver burnout.”¹ Some caregivers facing especially intense burnout may consider quitting, a decision that could require the patient to be placed in a nursing home or other facility.

It is essential that those taking care of someone near the end of life also take care of themselves by getting plenty of rest and making time for themselves away from the demands of caregiving.

What is respite care?

Medicare defines respite care as, “… short-term inpatient care provided to the individual only when necessary to relieve the family members or the person caring for the individual at home.”²

End-of-life patients receiving hospice services are eligible for “respite care,” defined and covered by the Medicare Part A hospice benefit. Hospice respite care allows a family caregiver to get a break of up to five consecutive days and nights from caregiving duties while the patient is cared for in a Medicare-certified inpatient facility.

These facilities are often nursing homes, but hospice providers have arrangements with a number of appropriate 24-hour long-term care facilities that can provide respite care. Some hospices provide their own inpatient hospice units for occasional respite care.

Types of respite care

Every family has unique needs. The right respite care choice depends on your loved one’s medical requirements, your budget and how much time away you need. The five main types of respite care include:

• Informal respite care: Informal respite care relies on your personal support network. This involves asking friends, family members, neighbors, or members of a faith community to sit with your loved one while you step away. Informal caregivers usually handle non-medical tasks like preparing a meal, reading aloud, watching television together or simply providing a comforting presence.
  • Informal respite care is ideal for caregivers who only need a brief break like running to the grocery store or going to a doctor's appointment. It is also ideal when your loved one has minimal medical needs and just requires light supervision.

• In-home respite care: With in-home respite care, a professional caregiver comes directly to your house. This service can be arranged through home health agencies, hospice organizations or specialized caregiving networks. These professionals can provide a wide range of services, from companion care (light housekeeping, meal prep, and socialization) to personal care (help with bathing, dressing, and using the restroom). Some agencies also provide skilled nursing care.
  • In-home care is a good fit if your loved one prefers the comfort and routine of their own home. It is highly flexible; you can schedule someone for a few hours a week or for overnight shifts.

• Adult day centers: Adult day centers are community-based facilities where older adults or individuals with chronic illnesses can spend the day in a supervised environment. These centers usually operate during standard business hours. They offer a structured daily program that includes meals, social activities, therapeutic exercises and sometimes transportation. Staff members are trained to assist with personal care and minor medical needs.
  • If you work a full-time job or need consistent, scheduled blocks of time during the week, adult day centers are a good option. They are particularly beneficial for patients who enjoy socializing and participating in group activities. This option is generally more affordable than hiring a private in-home caregiver.

• Residential respite care: Residential respite care involves a temporary stay at a senior living community, such as an assisted living or a memory care facility. Many of these facilities offer short-term stays, ranging from a few days to a few weeks. During their stay, your loved one receives a furnished room, meals, help with daily living activities and access to all the community's amenities and social events.
  • This option is ideal if you need an extended break, such as a week-long vacation or time to recover from your own medical procedure. It gives caregivers peace of mind knowing their loved one is in a secure environment with around-the-clock staff.

• Facility-based respite care: Facility-based respite care takes place in a more medically intensive environment, such as a nursing home or hospice inpatient unit. Facility-based care is equipped to handle complex medical needs. Patients receive 24-hour skilled nursing care from highly trained healthcare professionals. Medicare covers the cost of facility-based respite care for hospice patients.
  • You should consider facility-based respite care if your loved one requires around-the-clock medical supervision. This is often the safest option for patients in the later stages of a serious illness.

Who can receive respite care?

Members of the hospice care team, who are positioned to notice the symptoms of caregiver burnout, can ask the team physician to provide orders to admit a patient into a Medicare-approved facility. Caregivers themselves can also request respite care for their loved one in order to take a break. Some caregivers are reluctant to do so, but this is short-sighted.

When to consider respite care services

Recognizing when to ask for help is a vital part of providing loving care to your family member. You should consider respite care if you feel overwhelming physical or emotional strain, or if you notice you are neglecting your own health needs. It also provides a safe, reliable solution when safety concerns arise at home or when you need to step away for important life events and personal commitments.

Remember, seeking temporary support is not a sign of failure, but a deeply responsible choice that allows you to return to your loved one with renewed energy and patience.

Qualifying situations include:

• Caregivers who may be suffering from physical or emotional exhaustion from taking care of a patient around the clock
• Caregivers who would like to attend a family event such as a graduation, wedding, funeral, etc.
• Caregivers who become ill and cannot take care of the patient.

How does respite care work?

To get the most from respite care, plan ahead. Depending on your hospice provider, there may be a slight cost, perhaps five percent of the cost of the care.

Ask questions in advance. Then plan how you will use the respite time.

The ARCH National Respite Network and Resource Center recommends that caregivers take regular and sufficient respite periods and make this a meaningful and purposeful break from the care routine.³

Under respite care, the hospice team continues to expedite the patient’s plan of care, while the facility staff provides the care that would have been given by the family caregiver. Respite care can be provided periodically, ensuring that the caregiver can relax and enjoy time away knowing that their loved one is in good hands.

Not every caregiver needs up to five days and nights to enjoy a break in caregiving duties. Relief can often be found in shorter breaks. While a hospice care team member or trusted friend is visiting a patient, the family caregiver may utilize that time to run errands, take a walk or meet with friends.

Benefits of respite care: How it helps patients and family caregivers

Caregivers who take time for themselves return better able to resume their caregiver responsibilities. Respite care can be beneficial to the patient as well. The fact that their hospice team can call on a 24-hour facility to meet their needs gives some patients a sense of autonomy, and a renewed appreciation of their caregiver after the break.

Respite care benefits caregivers and patients. For caregivers, respite care provides:

• Physical and emotional relief: By taking a much-needed break from daily caregiving, respite care gives caregivers the ability to recharge.
• Improved self-care: so you can attend your own medical appointments, run essential errands, or simply enjoy a quiet afternoon doing a hobby you love.
• Restored sleep schedule: while trusted professionals handle nighttime needs, allowing you to get the deep, uninterrupted rest necessary to stay healthy.
• Less isolation: by using your time away to step out of the house and reconnect with friends, family members, and your broader support system.

In addition to providing medical support and supervision, respite care provides emotional benefits for patients, including:

• Reduced guilt: It can help reduce feelings of guilt that often come from relying on family for daily help, as working with professional caregivers eases this burden.
• Less isolation: A change of pace allows patients to interact with new people, which can lessen feelings of isolation and loneliness.
• Improved relationship with caregiver: By giving both patient and caregiver a chance to rest, respite care fosters a stronger, more joyful relationship when they reunite.

How and where to find respite care services

There are many paths to finding dependable respite care for your loved one. The following list highlights key resources and methods that can guide you to the right support:

• Personal recommendations: Start by asking friends and family for personal recommendations. They may have valuable experience or know someone trustworthy.
• Professional guidance: Reach out to your healthcare providers and local centers for independent living. These professionals can connect you with reputable respite care options in your community.
• Hospice organizations: If your loved one already receives hospice support, organizations like VITAS can help seamlessly arrange temporary respite care services for you.
• Online resource locator: Use the ARCH National Respite Network and Resource Center’s locator service tool to easily discover qualified respite care programs in your area, ensuring you find the exact support your family needs.

How to pay for respite care

Navigating the costs of respite care may seem challenging, but several financial assistance programs exist to help ease the burden for your family. While out-of-pocket prices vary widely based on the specific type and duration of the services you choose, you rarely have to carry this expense completely alone. Here are some ways families can pay for respite care:

• Medicare: If your loved one currently receives hospice support, the Medicare hospice benefit typically covers facility-based respite stays in full.
• Medicaid: Many states offer Medicaid waivers or programs that help pay for respite care in certain settings.
• Long-term care insurance: Some policies include coverage for temporary respite care services, depending on plan details.
• Veteran benefits: Veterans and their families may qualify for respite care assistance through the Department of Veterans Affairs.
• Non-profit assistance programs: Community organizations and national non-profits sometimes offer grants or subsidies to offset caregiving costs.
• Personal health plans: Carefully reviewing your own health insurance policy can uncover valuable funding options for respite care.

Respite care is one of our four levels of care

VITAS offers four broad types, or levels, of care as defined by the Medicare hospice benefit:

• Routine home care: This is how we provide hospice care most often: in patients’ homes, long-term care facilities and nursing homes.
• Continuous care (Intensive Comfort Care®): When medically necessary, acute symptom management is provided at home or in another facility by hospice staff in shifts of up to 24 hours/day so the patient can avoid hospitalization.
• Inpatient care: If a patient’s needs cannot be managed at home, VITAS inpatient hospice units and special arrangements at other local facilities provide hospice care around the clock until the patient can return home.
• Respite care: Limited to up to five consecutive days, respite care provides a brief “respite” for the patient’s primary caregiver by admitting the home care patient to an institutional setting without meeting the “inpatient” pain and symptom management criteria.

¹Turner, J. (n.d.). Caregiving at life’s end: Facing the challenges. American Hospice Foundation. https://americanhospice.org/caregiving/caregiving-at-lifes-end-facing-the-challenges/

²National Palliative Care Organization. Level of Care Tip Sheet, 2012. www.nhpco.org/regulatory

³http://archrespite.org/consumer-information