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Special Perspectives on Home en c] Community Care Eileen M. Quinian We aU know that there is no place like home. At no time in one's life is this more true than in old age. The benefits of remaining in the community are readily apparent. The positive psychological, social, and physiological effects encourage a maximum amount of independence despite functional limitations. Community living is generally less expen- sive; it allows individuals to support themselves. Living in the commu- nity usually delays the need for public funds and reduces the need for in- stitutionalizatio'~certainly ad goals for the future in health policy. INFORMAL CAREGIVERS Demographics Liu looked at the long-tenn care needs of the aged and found that one-fif~ of those needing long-term care intervention were institutional- ized all. Seventy-five percent remained in the community with informal care providers, and only 5 percent of persons needing long-tem~ care received alD their care from paid sources. The single most important characteristic differentiating these groups was the family's self-reported ability to care for its elderly. Family, here, is defined loosely as an individual's support system. Informal caregivers refer to persons who provided unpaid care to elderly persons who have some degree of physi- cal, mental, emotional, or economic impairment. According to the Informal Caregivers Survey, a component of He 1982 Long-Term Care Survey conducted by He Department of Heath and Human Services, 2 minion informal care providers provide care to at 36

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SPECIAL PERSPECTIVES ON HOME AND COMMUNI~IY CARE 37 least I.5 million elderly needing some type of assistance with activities of daily living (ADL`) (2~. Elaine Brody speaks about the myth of the abandonment of the old by their families in this country (3~. She believes that long-tenn care of elderly relatives is becoming a normative experience. In my years of practice, the care and commitment of families has consistently unpressed me, whether it be the Brantley sisters~ree schizophrenic sisters who have struggled many years in cent Harlem with their chronic disease or the frail couple In the northwest Bronx he has a serious cardiac condition and was dependent on her, until her confusion became apparent, secondary to Alzheimer's disease. Definite changes are occurring in the family structure that increase the stress on the family, including the increased proportion of women returning to the work force, the divorce rate, the geographic dispersion of offspring across the country, and old persons caring for even older per- sons. According to the House of Representatives Select Committee on Aging report, who are the informal caregivers in the United States (2~? Seventy-two percent are women; 29 percent are daughters and 23 percent are wives. Nine percent are sons; 13 percent are husbands. The rest are a cadre of folks, such as daughters-in- law, sons-in-law, grandchildren, and fnends. The average age of the informal care provider is 57. Twenty- five percent of these care providers are between ages 65 and 74; 10 percent are over age 75. In 1963, ~ out of 4 persons of age 45 had one surviving parent. In 1970, ~ out of 5, or 20 percent, of persons age 50 had one surviving parent. In 1980, 40 percent of persons age 50 had one surviving parent. Ten percent of persons in their late sixties had one surviving parent, and 3 percent of persons in their seventies have one surviving parent. One out of 10 persons age 65 and older have a surviving parent. For the first time in this country the average U.S. couple has more surviving parents than children. The average U.S. woman will spend more time providing care to her elder parents and in-laws than she win raising her children. In the future, this support base will shrink. Clinksdale looked at fertility rates from 1930 to the year 2030 to calculate the elderly offspring and dependency ratio (4~. As you know, adults during the Great Depression had decreased fervid rates. These folks are now our old .

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38 CLEAN M. QUINL~AN people and comprise the temporary peak in the ratio of elderly to depend- ent care providers. The baby boom, however, will provide more offspring to care for their parents, but the burden on children of the SO-year-olds and older those most likely to need long-tenn care win increase in the next 15 years. The ratio of elderly (greater than 80 years old at this time) to offspring will peak in We year 2000, decrease for 20 years, and then reach an even higher peak in the year 2030. Careg~vers are less likely to be employed. Sixty-two percent of all women between ages 45 and 55 are employed; yet less than SO percent of female care providers are employed (2~. What is the job like? Eighty percent of careg~vers give care 7 days a week, win a minimum of 4 hours per day. Most people derive satisfaction from giving care. Spouses, espe- cially, feel that their work as care providers contributes to their feeling of self-wor~. Lunits on personal life, however, contribute to stress for the caregiver. When a woman's childbearing responsibilities are heavy at the same time as her elder care responsibilities, she is sandwiched, as is wed described by Brody (3~. This sandwich effect will increase as women delay their childbeanng. George and Gwythen reported Wee times as many emotional stress symptoms in care providers as in the general public (5~. The care provider and the recipient generally agree that caregiving should not interfere with labor force participation, and few people Dess than 11 percent) quit their jobs to become exclusively care providers. Twenty percent generally cut back on work hours. Thirty percent rearrange their schedules, although this is usually the 1UXUIY of the professional or mana- gerial worker. Less than 20 percent take time off without pay, usually the option of the blue collar wooer. In other words, employment is not necessarily related to the overall amount of help provided. This is espe- cially true among women. Male care providers who are still in the work force, at least the statistics show, generally cut down their participation in the work force (2~. Schorr, in his 1980 work on filial responsibility and family policy wrote, "The independence of family caregiving patterns from public policy is more impressive than the connections" (61. Family life flows on untroubled by scholars and columnists, and politicians, too, ~ might add. Is it not time for us to support and protect this most-important resource we have in caring for our sick elderly, Me informal care provider? No high- tech therapy is appropriate if the client's basic physiologic and safety needs are not being met.

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SPECIAL PERSPE=TVES ON HOME AND COMMUNITY CARE 39 You might wonder why ~ even raised this topic, and yet, ~ fee} strongly, both emotionally and from my practice perspective, that without the support system, you have no foundation on which to rest the entire heady care system. One cannot even begin to plan for the health care of this nation without relying very heavily on the informal care providers. Informal care providers think of their service more as a loss of leisure time than as wow. They want their service to be rewarded more as an altruistic behavior in terms of appreciation and gratitude. Herein lies one of the basic problems that care providers for victims of Alzheimer's disease encounter, in that there is very lithe interaction on the personal level with the family member who is suffering from Alzheimer's disease. Support for Informal Care Providers What options are there to support this essential group of people? IdeaBy, support would include distnbuting information about preventive health care, self-care, monitoring, and health screening. This would also help the caregivers reach their own old age better prepared and healthier. There should be mechanisms to seek out high-nsk groups, such as the recently widowed, He poor, and the isolated. On the more realistic side, training programs are now in place Hat deal win specific problems that informal health care providers encounter, such as aphasia, incontinence, and behavioral problems. The special needs of the informal health care provider of patients with Alzheimer's disease need to be addressed at this point. I have had the privilege of working with two day-care programs, one in the Bronx at the Albert Einstein Medical Center and one in Greenwich ViBage in the ViBage Nursing Home, that provide day care to Alzheimer's patients. We see changes in the patients themselves, but the beauty of the day-care programs is He support networking talking place among the care providers group. Respite care is something that we should emphasize with aU care providers but especially care providers of patients with Alzhe~mer's dis- ease. Respite Care Respite care is a key support item for this cadre of people. Respite care refers to short-term substitute care provided in or outside the home on behalf of, or In the absence of, the primary care provider. ~ believe

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40 `;7LE:EN M. QUINLAN strongly that if there were a decent respite care system, much of the support system could be kept intact while catastrophes were taking place. Case Management ~ have had many discussions over the years on what the public sector should provide to these informal care providers, such as tax credits, vouchers, or direct payment. ~ now favor that the client or family or both be taught case management skins. If they are not able to team case management skins and manipulate the system themselves, Den they should be given a case manager or a patient advocate. As Dr. Donabedian said earlier, we must teach the care provider how to negotiate the system. Private Sector Help for Informal Care Providers The private sector has started to work very closely with some of the informal care providers. The American Association of Retired Per- sons (AARP) has produced a series of workshops as part of their program caned "Caregivers Workplace Project." This project makes available to the business community ways to help their working care providers under- stand the aging process, negotiate the maze of the community and institu- tional services, and cope with the responsibilities of elder care. The University of Bridgeport Center on Aging, together with Corporate Elder Care, have been working with Remington, Pitney Bowes, and the Peoples Bank to provide on-site respite care, hotlines, and supportive networking. OTHER CAREGIVERS When informal care providers need additional or supplementary assistance in caring for the elderly client, to whom do they rum? It is not news that nurse's aides or home attendants provide most of the care to the elderly client. The least educated, usually the most poorly paid, but also very well-meaning staff members are providing the majority of care to the sickest, most complex clients in the health care system. The 1986 Institute of Medicine (IOM) report on the quality of care in nursing homes recommends preservice training for nurse's aides (7~. New York State recently mandated 100 hours of education for all new nurse's aides in He state. ~ applaud this as a beginning, but continuing education for nurse's aides should be required on aU levels. ~ See Avedis Donabedian, "Quality of Care and the Health Needs of the E:lderly Patient ' in this volume.

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SPECIAL PERSPECTIVES ON HOME AND COMMUNITY CARE Closer attention needs to be given to the education, assessment, and evaluation of nurse's aides. This could probably not be more true than for the nurse's aide in the home where supervision is often minimal. To be able to motivate and seek change in this hardworking group of people is most rewarding but not done as often as it should be or could be. Professional Nursing If you read any newspaper, you know that there is a nursing shortage. This is not new, however, in gerontological nursing. There always has been a nursing shortage. Geriatric nursing, as is true for other health professions, does not have a strong draw. This may go back to our nursing school experiences, but ~ think that it probably goes back to childhood and societal experiences. In professional schools, particularly in nursing, the baccalaureate programs must look more closely at the didactic and clinical exposure to the elderly client. Despite the demo- graphic swing toward the aged, resistance still remains to teaching geriat- ric content. This is true not only in nursing schools but at Al levels of the professional schools. The 1986 IOM report addressed this issue of attract- ing and retaining students and staff for care of the geriatric client (7~. Among the issues of concern would be data on the numbers of students who express an early interest in gerontology, their characteristics, and an assessment what they would see as supportive measures while they are in school. Obviously the staff already working in geriatric settings or ex- pressing an interest in working with the aged have to be examined. These nurses have special educational needs that schools of nursing have not even begun to address. RESEARCH ISSUES Reimbursement ~ have a few thoughts on research directions. Diagnosis-related groups are transforming He clinical profile, although as Dr. Kane men- tioned, the hard data are in conflict.2 Those of us in He front lines, however, do fee} that patients are coming out of hospitals sicker and quicker. The entire reimbursement system needs to be reexamined. We are providing high-quality, highly technological care to a larger, more 2 See Robert L. Kane, "Home and Community Care of the Elderly: Framing the Issues," in this volwne. 41

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42 EILEEN M. QUINLAN acutely iD client group in the community, and we still have He same eligibility and reimbursement criteria formulated 22 years ago. The 1985 survey by me National Association for Home Care of 5,300 Medicare-certified agencies showed that 92 percent of the respon- dents repotted a sharp increase in sicker patients; 75 percent reported that a significant number of these patients were without home care services (and many believe that this number win increase); and 67 percent of the respondents thought Hat there was an increase in He number of claims denied after the care was delivered Aid. ~ work one day a week as a geriatric nurse practitioner in a New York City Health and Hospitals Corporation Hospital. Our biggest prob- lem there is the patient who is medically ready for discharge but is being held for social components to be put into place, such as placement of home health aides or, more commonly in Harlem, for the Medicaid process to be approved. These patients are placed on alternative levels of care. Not only do altemative-level-of-care beds have lower reimbursement rates, but these beds, in New York State, do not count in the state census that determines the occupancy rates. Every hospital within the Health and Hospitals Corporation system fell a few percentage points in the occupancy rates when the alternative-level-of-care beds were discounted, which resulted in a projected decrease in allocated beds. Should the hospital discharge the patient inappropriately, or should they lose He beds? The home care industry is exploding. Baxter-Travenol, a leader in home transfusions, had an income of $46 million in 1983. It jumped to $195 million in 1988. How are we monitoring this growth, bow in the profit and non-profit sector? The reimbursement mechanism must go beyond medical management and cover appropn ate levels of nursing and ancillary care. Rehabilitation In the clinical arena, Incontinence costs millions of dollars; it is usually the last straw in the home situation and prompts institutionaliza- tion. Some encouraging research has been done on rehabilitation of incontinent persons. Can we disseminate He results to educate both the professional and the lay care provider? Perhaps the producer of adult disposable diapers could help us in developing the type of bar code to which Dr. Kane referred.

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SPECIAL PERSPECTIVES ON HOME AND COMMUNI.IY CARE 43 Ethical Issues My last thought is that we should look at advanced directives in ethically related research such as living wills and durable power of attor- ney. Work has started on such controversial issues as "Do not hospitalize, do not feed" and must continue. Hospice and terminal care are very much a part of the care of the sick elderly patient and should be furler funded and expanded. REFERENCES I. Liu, K., Manton, K., and Liu, B.M. Health care expenses for the disabled. Health Care Financing Review 7~2~:51-58, 1986. 2. House of Representatives Select Committee on Aging. Exploding the Myths: Caregiving in America. Washington, D.C., 1987. 3. Brody, E.M. Parent care as a normative family stress. The Geron- tologist 25~2~:19-29, 1985. 4. Clinksdale, R., Burwell, B., Brudevold, C., Jones, G., and McCue, S. Financial Incentives for Family Care. Rockville, Md., La Jolla Man- agement Corporation and Systemetncs, Inc., 1985. 5. George, L.K., and Gwy~en, L.P. Caregiver wellbeing: A multidi- mensional examination of family caregivers of demented adults. The Gerontologist 26~3~:25~259, 1986. 6. Schoor, A. Thy Father and Thy Mother: A Second Look at Filial Responsibility and Family. Department of Health and Human Serv- ices. SSA Publication No. 13-11953. Washington, D.C., 198O. 7. Institute of Medicine. Improving the Quality of Care in Nursing Homes. Washington, D.C.: National Academy Press, 1986. 8. U.S. Senate Special Committee on Aging. Impact of Medicare Pro- spective Payment System on the Quality of Care Received by Medi- care Beneficiaries. Washington, D.C., 1985.