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

complete guide on what is respite care and how to find the right respite care service center

Learn about Respite Care, Respite Services and Finding the Right Respite Center or Home

As with anything in life, everyone needs a break from the mundane, continuous rigors of the everyday routine in life. That’s why most of us celebrate the coming of yet another much-needed weekend.  With the demands of family and work and little time left to ourselves, it’s no wonder we sometimes forget how important it is to simply rest and recharge. But it’s vital to our health and well being to allot time for reprieve.

Even more far-reaching are the negative effects on someone whose role is being a caregiver for a chronically ill or disabled individual.  Sometimes, the effects are so significant that it can be classified as a serious syndrome called “caregiver burnout.” This condition results in physical, emotional and mental depletion, and the long-term effects can sometimes be irreversible to the caregiver, or worse, to the dependent individual.  There are available services to alleviate the burden on caregivers. Some are volunteer-based, while others are fee-for-services from licensed providers.

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What is Respite Care?

It’s very common today for families to take over the care of their loved one, providing the comfort of staying in their own home or simply due to the immense financial burden that long-term facility placement can have.  The Family Caregiver Alliance states that over 50 million people provide care for disabled or aged family members. The Alliance estimates that family caregivers provide unpaid care valued at more than $450 billion annually (as of 2009).  Most of these informal caregivers spend an average of 20.4 hours per week providing care, many while holding down full- or part-time employment at the same time. Those who live with the loved ones they care for spend 39.3 hours per week, on average, performing caregiving duties.

Caregiving is an artful balance between providing the love and care for someone we deeply care about while making sure our own needs are not being neglected.  However, when burnout does rear its ugly head, the emotional and physical consequences on the family can be devastating. According to The Family Caregiver Alliance, 17% of caregivers in the U.S. feel that their own health has deteriorated as a result of their caregiving responsibilities. Studies have repeatedly shown that caregivers are at a greater risk of developing depression, anxiety, restlessness, chronic illness, neglect of self, cardiovascular disease and overall burnout.

Respite can take many forms, but essentially it provides a break for the family caregiver. These brief breaks from the duties of caregiving are beneficial to their overall health and well being and can be critically important to the caregiver. Things that are otherwise difficult to accomplish, like running errands, meeting a friend for coffee,  or even a weekend getaway provide a time to recharge. It’s a temporary break, typically for short durations, such as over a few days, but respite stays may also last for several weeks to a month in some cases.

Respite care services can offer temporary substitute supports or even a living arrangement for the care recipient. These short breaks can be offered in an inpatient setting or in the home, either occasionally or on a regular basis by formal or informal providers.  Moreover, respite care can be used as a means to delay nursing home, senior housing or assisted living placement and reduce the potential for in-home abuse or neglect due to caregiver burnout.

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.

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 guilt for desiring some time to themselves or for leaving their loved one. 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 a change in your eating habits?
  • Do you have feelings of helplessness?
  • Do you have an increasing fear of death?

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.

REASON

HOW OFTEN

LENGTH OF TIME

TOTAL AMOUNT

TYPE OF RESPITE

Spend time

with spouse/partner

1 day a week

2 hours

8 hours a monthIn home or out of home

Just time to relax and do nothing

2 days a week

2 hours

32 hours a monthIn home or out of home

Run errands

1 day a week

2  hours

8  hours a month

In home or out of home

Weekend getaway

Every quarter (3months)

48 hours

192 hours a year

In 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. In order for respite to be most effective it should be used 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. It is showing commitment, maturity and self respect to make an informed decision that will benefit everyone in the long run.

Caregivers can benefit from an array of services such as counseling, support groups, skills training, 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 actually 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 is 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, according to The Administration on Aging.

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 which provide trained staff to come to the home and attend to a family member while the primary caregiver leaves the home.

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 day care services. 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 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.

What type of respite care do I need?

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 are 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?

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.  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.

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. Respite may seem expensive, but keep in mind that there are a variety of options available. Most importantly, respite is a necessity for caregivers that benefits both you and your loved one by allowing you time to relax and recharge so you can be at your best when you are providing care.

Home care forms of respite can be provided by a home health agency, by independent caregivers or both. This form of respite has been proven to be the preferred method of respite to caregivers, according to a study done by Steven H. Zarit, Ph.D. Assistant Director of the Gerontology Center at Pennsylvania State University on Examining the Effectiveness of Respite. This is typically the most affordable form of respite, and it is often possible to find private care givers at a reasonable rate as opposed to using an agency. The average cost of an in-home health aide is about $21 per hour, but if the hired caregiver doesn’t need to be hands-on (your loved one requires supervision only), the average rate is about $19 per hour.

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 may have 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.

An adult daycare is commonly used for respite stays. Patients will need transportation to the care facility, which can be provided by caregivers, friends and family members or via local senior transportation services. Again, your local Office on Aging will have information on transportation services for seniors in your area.  Most providers and even some assisted living facilities offer this type of respite for half day, full day or on an hourly basis. On average these fees are $67 per day, less for half a day of services or on an hourly basis.

Some senior centers or churches will also provide an adult daycare services, often at a lesser fee. Because of the many options available and varying costs, it is imperative to do the research to determine what suits your financial situation. As mentioned, assisted living homes may have a daily rate for services which would be slightly more or less based on their monthly inpatient rates.

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. 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.

Nursing home respite services can cost significantly more than the other above-mentioned forms of respite, with an average daily rate of $205 per day for a shared room and $229 per day for a private room.  While this option can cost more, it’s a good way for caregivers to get a good feel for what the nursing facility is like without committing to full-time permanent placement. Total costs for any of these providers will depend on what services and amenities are included in the fee such as meals, recreational activities and transportation.

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.

The benefits of respite for the caregiver and recipient

Respite care is a necessity for informal caregivers; it is not a luxury. Donna Schempp, LCSW and program director for the Family Caregiver Alliance, tells Fran Silverman for Caring Today, “The more you are a caregiver, the more isolated and you get and the more your world narrows down.” She goes on to explain that the help from regular respite care will reduce caregivers’ stress, which can benefit the immune system. It will help caregivers be more patient and avoid exhaustion and frustration.

Respite is something responsible you do for yourself in order to be a better caregiver for your loved one. Schempp explains that respite offers caregivers a different perspective by allowing someone new to take care of their loved ones, and it often ends up being a much-needed breath of fresh air for both caregivers and those they serve.

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