Respite Care 101: The Complete Guide to Respite Care Services for Family Caregivers

When asked about their feelings on providing care for their aging relatives, most people reply with an enthusiastic, “I have endless patience for them, and am happy to help keep them comfortable.” As heartwarming as it may be to provide loving care to those that nurtured you throughout your life, it can also be very easy to forget to take care of yourself when caring for an aging parent or grandparent. While being a family caregiver can be very rewarding, caregivers are responsible for maintaining the physical and social care of their aging loved ones. 

Senior care may require advanced skills, and caregiver burnout can happen if you spend too little time focusing on yourself and your own wants, instead opting to spend all your energy on work, school, family responsibilities, and being a family caregiver. Among the long list of symptoms of caregiver burnout, one of the most detrimental side effects of being an unpaid caregiver would be the physical deterioration associated with prolonged stress and lack of sleep. 

Not only are there physical effects of burnout, but the caregiver also makes social sacrifices in order to juggle their relative’s declining health- for example, only 47% of middle-aged family caregivers discuss their home life at work, and millennials only talk about their aging relatives 19% of the time at work, indicating a level of social isolation that further compounds the lack of free time available to get away from home and be a social person.

Respite care is designed to help family caregivers alleviate some of the symptoms of caregiver burnout by providing institutionalized or day services to aging family members, giving their caregivers a much-needed break for a few hours a day or a few days a week. There are available services to alleviate the burden on caregivers. Some are volunteer-based, while others are fee-for-services from licensed providers. 

What is Respite Care?

It is never enjoyable to think about the possibility of calling respite services for your aging loved ones. Respite care is designed for those who desire to age in place, and are relying on their unpaid family members to help them with the tasks that they are now unable to complete by themselves. There are currently over 40 million unpaid caregivers in the US, 44% of whom are caring for their aging parents. Millenials are quickly catching up to middle-aged Americans, the current norm for family caregivers- right now, 16% of caregivers are providing care to their grandparents. On average, millennial family caregivers spend 21 hours a week caring for relatives, and 73% also work a full-time job. 

Respite can take many forms, but essentially it provides a break for the family caregiver. These brief breaks from the duties of caregiving are vital to maintaining a positive outlook when you have so many duties to juggle, some of them incredibly stressful. Things that are commonly reported by family caregivers to be difficult to accomplish include:

  • Running personal errands like shopping and paying bills
  • Enjoying personal hobbies, as time is typically consumed with caregiving or work
  • Meeting friends for nights out of even coffee
  • Weekend getaways or vacations
  • Managing their own personal finances, sleep, and responsibilities
  • Failure to perform self-care tasks like exercise, or eating healthy

Respite care provides a temporary break, typically for only a day or two. There is the possibility of respite stays that last for several weeks to a month, such as in the event of severe health conditions that can be difficult to manage. Not only does respite care give caregivers a much-needed break and reduce the potential for in-home abuse or neglect due to caregiver burnout, but it can also be used as a means to delay nursing home placement by helping a vulnerable elder through a difficult health period such as an acute illness or a broken bone following a fall.

How to Determine if Respite is Right for You

Respite will be most helpful if you seek services before you are noticing signs of exhaustion or burnout or when you’re starting to feel overwhelmed by your responsibilities.  When deciding on respite for your family bear in mind it should be a time for doing something enjoyable, beneficial and meaningful for both the caregiver and the care recipient. Depending on the unique needs of your aging loved one, reminiscence-therapy or music-therapy based programs may be most helpful to keep them engaged, or day services that include gardening therapy in their program. The benefits of these programs go past providing rest to caregivers- engaging in these activities have been shown to boost the quality of life overall in health and happiness for those participating.

Often, caregivers are reluctant to admit they may need a respite for their loved one, and deciding to allow it can be a big decision. They may feel guilty for desiring some time to themselves or for leaving their loved ones. To determine if you and your family could benefit from a respite ask yourself the following questions:

  • Do you feel emotionally and physically drained on a regular basis?
  • Are you concerned that in the event of an emergency there is no one that you trust to take care of your loved one?
  • Do you find yourself becoming more agitated with things that previously never bothered you?
  • Are you neglecting your own health-related needs due to lack of time or lack of desire to assess your own needs?
  • Are you experiencing resentment toward other family members who could help you but don’t?
  • Is your social life suffering?
  • Is there an unusual change in your eating habits?
  • Do you have feelings of helplessness?
  • Have you been resorting to self-soothing habits like smoking, gambling, or drinking?
  • Do you have an increasing fear of the death of yourself or your loved ones?

If you answered yes to any of these questions, it might be a good idea for you to take a quick online health screening for depression, and reach out to your own healthcare team, as well as consider respite care to help relieve some of your daily stress.

What Type of Respite do I Need and for How Long?

Finding the right balance for your life requires patience, persistence and preparation. Planning for your relief does require some time, both to analyze the type of respite that’s right for you and to determine the frequency and time frames that make sense for you and your loved one. Getting it down on paper to visualize what’s needed is often the first step in taking care of yourself and recharging your body. Use a table to help you determine what’s best for you and your family.

The following table is a sample plan you can replicate or modify to determine your respite needs. As you find providers and determine costs, you can add columns to calculate your total costs and how to plan for those expenses.

REASONHOW OFTENLENGTH OF TIMETOTAL AMOUNTTYPE OF RESPITE
Spend timewith spouse/partner1 day a week2 hours8 hours a monthIn home or out of home
Just time to relax and do nothing2 days a week2 hours32 hours a monthIn home or out of home
Run errands1 day a week2  hours8  hours a monthIn home or out of home
Weekend getawayEvery quarter (3months)48 hours192 hours a yearIn home or out of home

What Types of Respite Providers Are There?

Although caregiving can be beneficial and rewarding for both caregivers and their loved ones, it does present various challenges and difficulties. It is very important for the caregiver to be given encouragement to seek respite services, before signs of exhaustion are present to promote an appropriate balance in their lives. Depending on your situation, your schedule, and your loved ones needs, it might be necessary to use respite services at least two days a week and in regular blocks of time.

Sharing the tasks and the burdens of being a caregiver does not mean one is weak or unable to fulfill the responsibilities of taking care of the family, it simply means that they are being proactive in taking precautionary measures to be readily able to be a healthy caregiver. Not only does a caregiver need extra help finding time for themselves, but people living with the symptoms of aging benefit greatly from respite services, including:

  • Increased social interaction with respite workers, volunteers, and fellow participants
  • More opportunities for healthy meals, because respite programs have nutritional standards handed down by the government after years of research in elder care
  • A rotating calendar of scheduled activities and outings, as well as designated areas for worship services, art and crafts, gardening, car shops, cooking, exercise, and more
  • Extra eyes on your loved ones health, increasing opportunities to be proactive about current health problems and those coming down the line such as with balance or eating
  • Reduced guilt at being a burden on their loved ones

Caregivers can benefit from an array of services such as counseling and support groups, skills training and education, transportation and financial assistance. However, it has been found that the most beneficial type of service to caregivers is respite to help improve or preserve the quality of their daily lives. According to a national study, nearly 900 caregivers were found to admit that the most helpful resource they most desired and needed was some form of respite service.

The United States passed the Lifespan Care Act of 2006 to improve respite care services for caregivers in each of the 50 states, and respite care is acknowledged as a National Issue.  This act brings together federal, state, and local resources and funding streams to help support, expand and streamline the delivery of planned and emergency respite services. It also provides recruitment and training of respite workers as well as caregiver training and empowerment.

It is important to check in your local community to see exactly what services are available.  A State Aging Office is a good place to inquire about the existing services in your area. The most common form of respite care is provided in the home.  It’s frequently offered through home health agencies that provide trained staff to come to the home and attend to a family member while the primary caregiver leaves the home. The National Institute of Aging recommends you begin your search with this Respite Locator database provided by the ARCH National Respite Network.

Most areas also offer adult day care services, usually provided out of the home in care centers such as assisted living (see our Assisted Living Buying Guide for more information) and nursing home facilities or in senior centers, churches or facilities designed specifically to provide adult daycare services. In addition to adult daycare, most community-based centers will provide overnight services or multiple days of respite care.  In most long-term care or residential facilities, there are often a specific number of beds set aside exclusively for short-term respite stays. In some communities, nonprofit, volunteer or religious-based organizations offer grants to pay for caregivers to come into the home.

An often overlooked form of respite can be informal respite, where friends or relatives come into the home and share the caregiving responsibilities. Far too often, primary caregivers do not accept or even reach out to others in their close circle of family and friends who are probably willing to help.  Caregivers need and deserve this respite time to be at their best for their loved ones and shouldn’t feel guilty about allowing others the opportunity to help out. It’s important to take people up on their willingness to alleviate some of the burden, to keep yourself healthy as long as possible, so you can care for your loved ones longer.

Adult Daycare

Adult daycare services are provided in a variety of settings, from church meeting halls to senior centers and assisted living facilities. According to the CDC, there are over 4,600 adult daycare centers across the US. These centers are designed to provide intermediate care after a hospital discharge, as well as to provide access to day services to those that might otherwise be isolated in their homes, and provide respite to family caregivers. Typically, a person will spend six to twelve hours at the adult daycare center, eating lunch and a snack, and enjoying a variety of activities with their friends. Some examples of activities that would be on an adult daycares schedules include:

  • Board games, card games, and bingo
  • Community volunteer visits, such as talented kids or musicians and artists
  • Planning and decorating for, as well as enjoying holiday parties with their community
  • Arts and crafts, often focused on the participants specific likes, as determined by their input and interviews with family members in the case of dementia
  • Scheduled group outings with company or public transportation

Adult daycare services are not free, and the fees to use these services are often paid out of pocket. Many centers have scholarships and sliding-fee scales, and states may have their own statewide funding to help cover the cost of aging in that area. Across the states, the cost for day services can cost from $60 to over $100.

Informal Respite

Family caregivers, also known as informal caregivers, tend to easily assume the role of unpaid caregiver, often sacrificing parts of their lives in the process. On top of the mental strain of helping your relatives age, there is a physical aspect of caregiving that can break down the caregiver’s body, and a financial cost as well- 24% of caregivers are forced to cut back their hours or quit their jobs in order to continue providing care for their relatives.

Not every family caregiver needs to live at home- a reported 15% of family caregivers live an hour or more away from their loved ones and commute to provide help, adding a loss of valuable time driving to the long list of sacrifices that go along with unpaid caregiving. Not much research has been done into the characteristics of the unpaid, informal caregiver, but we do know that over 28% of adults will at some time provide care for a friend or loved one. Shockingly, children are often informal caregivers as well- there are as many as 1.8 million family caregivers between the ages of 8 and 18. These children are likely to come from low-income and one-parent households, and are at a high risk of developing depression.

Family, or informal caregivers, tend to provide as much help as they can for as long as possible. Eventually, even the most doting child must make a decision about placing their aging loved ones, and studies show that tends to happen around the time that more than two hours of help a day is needed, or help with more than three activities of daily living (ADLs). It is important to create a strong network of informal caregivers as well as dedicated social service contacts to help you take care of your relatives and yourself, but even the strongest network can’t always support the task of caring for a disabled adult. Luckily, there is respite care, day services, and assisted living communities available to help you take care of your family. 

What Type of Respite Care Should I Seek?

Depending on your unique situation, i.e. the needs of your loved one, your location, your financial capability, and other factors, you may have quite a few options for respite care. Before deciding on the type of respite you need, you should think about the situation you need respite for and ask yourself a few questions to determine what type is best:

  • Is it to run errands for a couple hours?
  • Is it to have lunch with a friend?
  • Is it to go away for the weekend for an extended break?
  • Do you need regular help with providing the care or activities of daily living (ADLs) for the care receiver?
  • Is there a family member or close friend that I trust to share in some of the care?
  • Will you feel comfortable with an in-home provider in your home?
  • Do you trust the people that will be caring for your loved one?
  • What can I afford to pay for services?

Informal respite might be the best solution for you if you have access to trusted friends and family members that are willing to step in for a few hours at a time while you go run errands or just have you-time. Some friends may be willing to help out for free, but if you find that you need consistent assistance, or your aging relative becomes increasingly difficult to care for, you may need to pay your informal respite help or hire professional caregivers to come in for a certain amount of time each day.

Adult daycare respite services are great for someone who wants to give their aging loved ones a chance to participate in their community and hang out with friends, while they spend a day at their job or relaxing. The adult daycare centers provide meals during the time the person is there, a safe environment to spend time with friends, help in the restroom if needed, and a variety of fun activities that are designed to engage participants through their lifelong interests, like gardening, music, and reminiscing.

Nearly all nursing and rehabilitation homes (typically referred to as skilled nursing facilities) also offer short-term respite care. However, these types of facilities have eligibility requirements: The care recipient must have a medical need requiring skilled nursing care due to a wound, diagnosis-specific care, or needing physical or occupational therapy. 

Professional caregiver respite assistance is an option for those who can afford it, and want to be able to bring a pro in to take care of their family members while they leave the house. If your budget allows it, and your aging loved one needs more help than you can provide but doesn’t want to leave home, it might be time to consider a professional caregiver for respite. Professional respite services can also be received at an assisted living facility with a respite day program. These helpers are certified to perform caregiving duties like toileting and helping with mobility, and are trained to form bonds with their clients so that they can become trusted friends as well as formal caregivers- often a necessity in dementia care. 

Home care forms of respite can be provided by a home health agency, by independent caregivers or both. The average cost of an in-home caregiver can be less than $20 an hour, but can easily cost hundreds of dollars a day, especially if your loved one has extensive needs like needing help their medications or using the restroom.

Again, you can sometimes find more affordable help by hiring privately instead of utilizing an agency. Doing so, however, will require you to locate caregivers who have good references and those with solid recommendations so that you feel comfortable leaving your loved one for short durations of time. Your local Office on Aging usually has lists of individuals who offer private-duty care services. Planning for respite does require a little homework to ensure your peace of mind and your loved one’s safety and happiness. In the event that long-term care becomes a necessity, there are plenty of retirement options available today, such as moving to an assisted living community.

How Do I Pay for Respite Services?

Unfortunately, most respite services are not typically paid for by Medicare or private insurance plans unless the recipient is also receiving hospice services. Many recipients of respite care are paying for it out of pocket. The costs for different types of respite can vary, as well as the potential assistance programs meant to help caregivers with their eldercare expenses. But even with the limited financial assistance out there, it can still be quite a stretch to cover the cost of everyday living and medical bills, on top of respite care costs.

The least expensive form of respite help would be from unpaid informal caregivers such as yourself, but in the event that your extended network is unable to meet every need, the next best option would be to hire in-home help on a regular basis, or take your elderly loved one to an adult day center. The average cost nationwide for daycare services is $1,560, according to Genworth’s Cost of Care Survey.  

If your aging loved one doesn’t want to visit an adult daycare center, you might be able to hire an in-home homemaker or home health aide. The homemaker would help prepare meals, perform chores, and socialize with your loved one, at a national average of around $23 an hour. For slightly more, you can hire a home-health aide, who is also certified to assist with tasks like toileting and moving around. 

These workers can be hired through a home health agency, or privately from caregiver database websites, or referrals from your local Area Agency on Aging. A home health agency will cost slightly more than a private employee, because the agency has a rigorous screening process to ensure their clients are cared for by only the safest caregivers. 

Veterans Benefits

Those that are receiving Veterans Benefits may also be eligible for assistance in paying for respite services. Contact your local Veterans Affairs Office to determine if your loved one meets the criteria for financial assistance for respite services, and apply for benefits.

Medicaid

If the patient receives Medicaid, which is a state and federal partnership to provide insurance for people who have a limited income and assets, many states will pay for respite caregivers. Medicaid personal care benefits may also be used for a brief respite stay in facilities offering such services, but it is important to check with your state program to determine your loved one’s eligibility. 

Medicare

Patients must also have had a Medicare qualifying hospital stay of three or more days in order for respite care to be paid for by Medicare. When used in conjunction with their hospice benefit, a respite stay can last up to five days at a time with no limits on how frequently the benefit is used. 

Local Resources

Some senior centers or churches will also provide an adult daycare services, often on a sliding-fee scale, especially in low-income areas where there is more access to government funding for aging services. Contact your local churches, senior centers, food banks, and Area Agencies on Aging to find any senior care and respite service assistance that may be near you.

Additional Resources

https://www.cdc.gov/aging/caregiving/caregiver-brief.html
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439
http://sociology.csusb.edu/docs/Respite%20Brochure%20%282010%29.pdf
http://www.govtrack.us/congress/bills/109/hr3248
http://www.virginianavigator.org/vn/respite-services/article-149.aspx
http://www.healthcare.gov/using-insurance/low-cost-care/medicaid/
http://www.caregiverslibrary.org/caregivers-resources/grp-caring-for-yourself/hsgrp-support-syst

ems/what-is-adult-day-care-article.aspx

http://www.medicare.gov/nursing/payment.asp