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caregivers", but should instead be praised for accepting outside help, making decisions which take into account the family as a whole, and letting go of control. We must recognize that respite care is good for the whole family. 10

Respite care to give everyone, including the patient, a break -- is "... a service that provides family caregivers with intervals of relief from the demands of their caregiving roles. Service providers, researchers, and caregivers themselves have long known that family members who take care of chronically ill, developmentally disabled, or physically handicapped relatives need periods of time off, both to protect their own physical and mental health and to allow them to maintain the quality of the care they are providing."11 This report, by The Brookdale Foundation, outlined the factors which have contributed to the current interest in the development of respite programs:

1) Most Americans regard the care of their infirm aged relatives as a family responsibility. In fact, 80% of the care provided to chronically ill or mentally impaired older people living at home is provided by family members -- usually spouses or daughters.

2) The evidence suggests that families do better in the provision of this care

if they have help from social service and health care systems and professionals.

3) The provision of in-home or community-based services has taken on an added

attractiveness as a cost-containment strategy.

4) A final agent for change has been the formation, and increasing strength and visibility, of the Alzheimer's Disease and Related Disorders Association (ADRDA).

At this time, there are three general approaches to the delivery of respite services: providing a surrogate caregiver in the home of the cognitively impaired older person; placing the impaired person temporarily in a long-term care facility; and adult day programs. Some caregivers may make regular use of all these forms of respite care in order to continue to provide giving care for a longer period of time. 12

In an East Bay Respite Care Survey, prepared for The Alameda County Respite Care Community by The Peabody Group, caregivers told us what kinds of respite care they want:

1) most caregivers surveyed prefer in-home care;

2) the most important factors in choosing respite services are specially

trained and certified staff and cost;

3) most caregivers can spend no more than $50 for an 8-hour day of respite

care but they can spend slightly more for a 24-hour day of care;

4) caregivers are most interested in day care in an organized setting and

specialized care for Alzheimer's disease for out-of-home care; and

5) caregivers are most interested in home health aides, homemakers, and other 13 friends and relatives for in-home respite care.

One form of respite care is adult day care. A recent survey of adult day care centers by the NCOA nationwide reports that, "Seventeen years ago, there were only a dozen such centers. Now, an estimated 28,000 persons are served in adult day care facilities. Of an estimated 1,200 adult day care centers in the United States, over 70% responded to NCOA's companion survey. The average adult day care participant is female and 73 years old, receives an average monthly income of $478, and spends almost six hours daily at the center. Three-quarters of adult day care centers are private nonprofit organizations likely to share physical facilities with another program. Volunteer help flourishes. In 671 centers responding to this question, volunteers contribute 83,313 hours a month."14

Despite the importance of adult day care as one key way to provide respite care for caregivers, another NCOA study found that "... The climate [for the development of adult day care] is unfavorable or weak primarily in states where the economy is poor and funds are unavailable generally for programs benefitting elderly or disabled persons." The same study found that, "Questionnaire respondents felt that funding remains the major constraint in -15 the growth of adult care programs."

Adult day care centers provide a complex constellation of services designed to prevent premature institutionalization. These centers provide older persons with the option of remaining at home and continuing relationships with family and community rather than having to go into an institution prematurely. It is estimated that 25% of the people in nursing homes could use adult day health care rather than being institutionalized, thereby saving the federal government money by providing a less expensive alternative. However, adult day care is not a replacement for institutional care and was never intended to be instead it is designed to provide an alternative to nursing home care for certain, carefully selected patients. 16 In addition, adult day care may be viewed as a transitional service even if the transition goes on for years before the patient dies or goes into an institution. Adult day care may also help to prepare the family for a future institutionalization, should that become necessary.

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But when all is said and done -- when we've looked at statistics, regulations,
financing, and delivery systems -- it is still the caregivers themselves who

provide us with the best and most articulate reasons to support respite
services.

References

1 Lynette Thwaites. "We all benefit when society shares the burden of
Alzheimer's" in Continuing Care, December 7, 1987, p. 33.

2 Friedman, Dana E., Ed.D. Personal communication, April 1988.

3

4

Bass, David M. and G. Deimling. "Family caregivers and their support" in
the BRI Bulletin, First Quarter, 1988, p. 1+.

"Medicare DRGs linked to early hospital discharges," American Medical News,
December 4, 1987, p. 33.

5 Beverly Sanborn, as quoted in Lynette Thwaites, "We all benefit when
society shares the burden of Alzheimer's in Continuing Care, December 7,
1987, p. 31.

Lisa Gwyther. Personal communication, 1986.

"Professional care for victims of Alzheimer's disease..." in Health Policy
Week, Vol. 17, No. 5, April 18, 1988.

6

7

8 "Elder care

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A growing concern," Hewitt Associates, 1987.

9 Warshaw, L. J. et al. "Caregivers in the workplace: Employer support for
employees with elderly and chronically disabled dependents," in The Journal
of Occupational Medicine, Vol. 29, No. 6, June 1987, p. 520.

10 Beverly Sanborn in Thwaites, op. cit., pp. 31-32.

11 Quinn, T. and Jill Crabtree. "How to start a respite service for people
with Alzheimer's and their families," The Brookdale Foundation, June 1987.

12 East Bay Respite Care Survey, prepared for the Alameda County Respite Care
Community by The Peabody Group (San Francisco, CA), December 1987.

13 Adult Day Care in America: Summary of a National Survey, National Council
on the Aging, 1987.

14 Kurland, Carol H. "The constituency speaks out" in Perspective in Aging,
Nov./Dec. 1985, p. 29.

15 Larmer, Kay. "The constellation of adult day care services" in Perspective
in Aging (published by NCOA), Nov./Dec. 1985, pp. 16-17.

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