Respite: What Caregivers Need Most

Taking Care of the Caregiver

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.