Respite: What Caregivers Need Most

Respite: What Caregivers Need Most

Family caregivers of chronically ill older persons or those with disabilities are generous, compassionate individuals. They care for loved ones in the familiar surroundings of their own home or community. These caregivers are “on call” 24-hours a day, 7 days a week because they want to see their loved one remain in the comfort and security of their own environment. But at some point, even the caregiver needs a break, a rest, or a breather. The caregiver needs respite. Respite provides informal caregivers – usually relatives a break from their daily responsibilities.

Family caregivers save federal, state and local governments, which are faced with the challenge of covering health and long term care expenses of persons who are ill and have chronic disabilities, a great deal of money. If the work of caregivers had to be replaced by paid home care staff, the estimated cost would be $45 – $94 billion per year. In response to and in recognition of the distinct needs of caregivers, the Administration on Aging (AoA) of the U.S. Department of Health and Human Services is implementing a program that will soon begin to offer respite and other services to some caregivers who so desperately need a break.

The National Family Caregiver Support Program Offers Respite

The enactment of the Older Americans Act Amendments of 2000 (Public Law 106-501) established an important program, the National Family Caregiver Support Program (NFCSP). Funded at $125 million in fiscal year 2001, approximately $113 million has been allocated to states to work in partnership with area agencies on aging and local and community service providers to put into place multi-faceted systems of support for family caregivers. A specific component of these systems is respite. That could include, for example, respite care provided in a home, an adult day-care center or over a weekend in a nursing home or an assisted living.

Research has confirmed the benefits of respite. A paper compiled by Drs. Dale Lund and Scott Wright – experts in the field of caregiving analysis — states that respite benefits both caregivers and their loved ones. It further states that to be most effective, caregivers should consider accessing services early in their caregiving experience. Lund and Wright have found that caregivers need sufficient and regular amounts of respite, and it is important that the caregiver give sufficient thought as to how he or she wants to use that freed-up time, when and if it becomes available.

Respite can cover a wide range of services based upon the unique needs of the caregiver. It might involve medical or social adult day care and/or a short-term stay in a nursing home or assisted living facility for the loved one; a home health aide or home health companion; a private duty nurse or adult foster care.

For the caregiver, personal respite varies as much as the individual and could mean, for example: giving the caregiver a short break to attend a doctor’s appointment or to go shopping; allowing the caregiver the opportunity to nap, bathe, or otherwise rejuvenate him or herself; attending a church service or seeing a movie; taking a much-needed vacation; pampering oneself with a hair appointment or manicure; scheduling elective surgery; or simply visiting friends or relatives.

Listening to the Caregivers

In developing the NFCSP, AoA conducted a series of roundtable discussions with caregivers of older persons who have chronic illnesses or disabilities. These discussions were held in more than 30 cities across the United States, and allowed AoA to gain a more complete understanding of the day-to-day challenges faced by families caring for their older relatives, and to obtain additional insights into the types of services and supports that would respond to the needs of these and other caregivers. It was clear after listening to these caregivers that respite is a necessity. Here’s what some of the caregivers told AoA:

“I took a vow when we got married 54-years ago, and I intend to carry it out. My only fear is that I will die from exhaustion before she does, and who will care for her then?”
— Caregiver husband; Chicago, IL

“It has been a challenge going through this alone. To be able to have someone help me . . . for just one-half hour or one hour to put her [mother] in bed, or get her up in the morning . . . this would be helpful.”
— Caregiver daughter; San Francisco, CA

“Respite is my number one need. I’ve been caring for Mom for seven years . . . in that time, I have had one vacation for 3 days.”– Caregiver daughter; Milwaukee, WI

Many caregivers noted hardships and problems including physical and mental strain and feeling burned out or overwhelmed. Some felt they did not have enough time or energy to meet the demands facing them and that caregiving takes away from their personal lives. AoA, through the state and area agencies on aging (AAA), adult day care centers, and some community- and faith-based organizations, offers respite services to caregivers. The degree and types of respite services offered are discretionary in each state and often vary widely from state to state.

The National Aging Network

Under the authority of the Older Americans Act, AoA leads a national aging network to plan, coordinate, and provide home and community and faith-based services to meet the unique needs of older persons and their caregivers. AoA’s aging network includes: 56 State Units on Aging, 655 Area Agencies on Aging, 236Tribal and native organizations representing 300 American Indian and Alaska Native Tribal organizations and 2 organizations serving Native Hawaiians, plus thousands of service providers, adult care centers, caregivers, and volunteers.

Who to Contact for Help

Local AAA is one of the first resources a caregiver should contact when help is needed. Almost every state has one or more AAA, which serve local communities, older residents, and their families. (In a few states, the State Unit or Office on Aging serves as the AAA.) Local AAA’s are generally listed in the city or county government sections of the telephone directory under “Aging” or “Social Services.”

The Eldercare Locator

AoA supports a nationwide, toll-free information and assistance directory called the Eldercare Locator, which can locate the appropriate AAA to help an individual needing assistance for their loved ones, relatives, or friends. Older persons and caregivers can call the Eldercare Locator at 1-800-677-1116, Monday through Friday, 9:00 a.m. to 8:00 p.m. Eastern Time.

“Taking time out, away from the care of an impaired person, is one of the single most important things that you can do to make it possible for you to continue to care for someone.” – Mace and Robins, The 36 Hour Day.

* Many caregivers experience immense stress and feelings of burden, high rates of depression, and feelings of anger and anxiety.
* Caregiving can adversely affect one’s physical health and ability to continue providing care leaving two impaired persons, rather than one.
* The emotional and physical strain of caring for a frail older relative is often exacerbated by worries over paying for care, particularly for nursing homes.

Research has shown that some caregivers must quit their jobs to give care, while others experience increased absenteeism, lower productivity at work, lost career opportunities, and loss of future earnings.

American Society on Aging

A unique feature of respite care is the help it offers to both the caregiver and the care recipient.

Respite care can allow time to go to the doctor or the grocery store, participate in a support group, or attend a class to learn caregiving skills.

Researchers have suggested that respite care can relieve the burden of the caregiving situation and allow families to continue to care for loved ones who would otherwise be placed in a nursing home.

For More Information

Working in close partnership with its sister agencies in the U.S. Department of Health and Human Services, the AoA is the official Federal agency dedicated to policy development, planning and the delivery of supportive home and community-based services to older persons and their caregivers. The AoA works through the national aging network of 56 State Units on Aging, 655 Area Agencies on Aging, 236 Tribal and Native organizations representing 300 American Indian and Alaska Native Tribal organizations, and two organizations serving Native Hawaiians, plus thousands of service providers, adult care centers, caregivers, and volunteers. For more information about the AoA, please contact:

U.S. Administration on Aging
Eldercare Locator: 1-800-677-1116, Monday — Friday, 9 a.m. to 8 p.m. ET


Understanding Long Term Care

Awareness Campaign – What is Long-Term Care?

Long-term care is a variety of services and supports to meet health or personal care needs over an extended period of time. Most long-term care is non-skilled personal care assistance, such as help performing everyday Activities of Daily Living (ADLs), which are:

  • Bathing
  • Dressing
  • Using the toilet
  • Transferring (to or from bed or chair)
  • Caring for incontinence and
  • Eating

The goal of long-term care services is to help you maximize your independence and functioning at a time when you are unable to be fully independent.

Who Needs Long-Term Care?

Long-term care is needed when you have a chronic illness or disability that causes you to need assistance with Activities of Daily Living. Your illness or disability could include a problem with memory loss, confusion, or disorientation. (This is called Cognitive Impairment and can result from conditions such as Alzheimer’s disease.)

This year, about 9 million Americans over the age of 65 will need long-term care services. By 2020, that number will increase to 12 million. While most people who need long-term care are age 65 or older, a person can need long-term care services at any age. Forty (40) percent of people currently receiving long-term care are adults 18 to 64 years old.

What Are My Risks of Needing Long-Term Care?

About 60 percent of individuals over age 65 will require at least some type of long-term care services during their lifetime. Over 40 percent will need care in a nursing home for some period of time. Factors that increase your risk of needing long-term care are:

  • Age – The risk generally increases as you get older.
  • Marital Status – Single people are more likely to need care from a paid provider.
  • Gender – Women are at a higher risk than men, primarily because they tend to live longer.
  • Lifestyle – Poor diet and exercise habits can increase your risk.
  • Health and Family History – also impact your risk.

How Much Care Might I Need?

It is difficult to predict how much or what type of care any one person might need. On average, someone age 65 today will need some long-term care services for three years. Service and support needs vary from one person to the next and often change over time. Women need care for longer (on average 3.7 years) than do men (on average 2.2 years). While about one-third of today’s 65-year-olds may never need long-term care services, 20 percent of them will need care for more than five years.

If you need long-term care, you may need one or more of the following:

  • Services at your home from a nurse, home health/home care aide, therapist, or homemaker;
  • Care in the community; and/or
  • Care in any of a variety of long-term facilities.

Generally you pay a provider for these services. But most people receiving paid services in their home or community need to supplement these services with help from family and friends.

How Do Care Needs Change Over Time?

Many people who need long-term care develop the need for care gradually. They may begin needing care only a few times a week or one or two times a day, for example, help with bathing or dressing. Care needs often progress as you age or as your chronic illness or disability become more debilitating, causing you to need care on a more continual basis, for example help using the toilet or ongoing supervision because of a progressive condition such as Alzheimer’s disease.

Some people need long-term care in a facility for a relatively short period of time while they are recovering from a sudden illness or injury, and then may be able to be cared for at home. Others may need long-term care services on an on-going basis, for example someone who is disabled from a severe stroke. Some people may need to move to a nursing home or other type of facility-based setting for more extensive care or supervision if their needs can no longer be met at home.

Source: U.S. Department of Health and Human Services, National Clearinghouse for Long-Term Care Information.

Personal Emergency Response Systems (PERS) – What You Need to Know

Could you or a loved one benefit from a Personal Emergency Response System (PERS). A PERS is an electronic device designed to allow people with disabilities or older people living alone to summon help in an emergency.

People use Personal Emergency Response System (PERS) for various reasons, such as general concerns about falling, needing reminders about when to take medications, or to allow loved ones or caregivers to run errands or go out for a while without worry. Others, like John, may have medical conditions that affect their ability to be alone and still be able to call for assistance.

John had in-home care nearly all the time, but his caregiver had taken a quick trip to the pharmacy to pick up his medications. Suddenly, he needed help, but found himself all alone. He hadn’t been in this position for as long as he could remember and he was frightened by his feelings of fear and helplessness.

Thanks to a Personal Emergency Response System (PERS), John was able to call for help that responded in just seconds. Once he pressed the button he wore around his neck, remote call answering began communicating with John without him ever having to get to the phone.

The call for help was received at a centrally monitored response center, where trained response associates have complete access to John’s personal profile and critical information. They quickly found out why John needed help and took action.

The response center can assess the situation and get help from a close neighbor or family member, or an ambulance, fire, or police department, when needed. If John had been unable to indicate his needs, emergency help would have been dispatched immediately.

Not only do Personal Emergency Response System (PERS) provide peace of mind to the person with limited physical abilities, but caregivers can also feel secure in knowing that their friend or family member is well cared for. Continuous caregiving can lead to exhaustion, putting the friend or family member at risk. Having reliable help just seconds away is a comfort to everyone.

Aside from the two-way voice communicator, a selection of specially designed assistive devices can be used with a Personal Emergency Response System (PERS) to give individuals with neuromuscular disabilities the ability to call for help. An assessment by an occupational or physical therapist may be needed to determine which assistive device would be most appropriate.

Examples of Assistive Devices Include:

  • Pillow Switch that can be pinned to a pillow and activated by a controlled head movement.
  • Wobble Switch that can be activated by gross body or head movements coming from any direction.
  • Rocker Lever Switch that is activated by gross hand, arm or body movements or by a mouth or head stick.
  • Sip or Puff Switch that is activated by sipping or puffing on a tube depending on availability of breath control or respiratory control.
  • P-Switch, which is activated by minimal movement, detected by small sensors (set by the user) and can be placed on any part of the body capable of minimal motion.

There are a variety of Personal Emergency Response System (PERS) available. Many charge a monthly fee and a one-time set-up fee. Others require you to sign a three-month, six-month or year-long-lease, while others offer rental opportunities. To navigate the maze of PERS, the Federal Trade Commission (FTC) offers the following suggestions:

  • Check out several systems before making a decision.
  • Find out if you can use the system with other response centers. For example, can you use the same system if you move?
  • Ask about the pricing, features, and servicing of each system and compare costs.
  • Make sure the system is easy to use.
  • Test the system to make sure it works from every point in and around your home. Make sure nothing interferes with transmissions.
  • Read your purchase, rental, or lease agreement carefully before signing.

Questions to Ask the Response Center

  • Is the monitoring center available 24 hours a day, 7 days a week?
  • What is the average response time?
  • What kind of training does the center staff receive?
  • What procedures does the center use to test systems in your home? How often are tests conducted?

The FTC works for the consumer to prevent fraudulent, deceptive and unfair business practices in the marketplace and to provide information to help consumers spot, stop and avoid them. Visit for free information on consumer issues. Also visit or call toll-free, 1-877-FTC-HELP (1-877-382-4357); TTY: 1-866-653-4261.

Provided by: Phillips Lifeline
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