Item 3

AN OVERVIEW OF RESPITE CARE AND ADULT DAY CARE

IN THE UNITED STATES

Prepared by Marcie Parker,

Senior Research Associate, InterStudy
for

the Senate Special Committee on Aging

June 14, 1988

"Caregivers" are people who are providing care to those who are impaired in some way (physically, mentally, emotionally) and who need help with aspects of their daily living. "Informal caregivers" are those who are unpaid and provide this care on a voluntary basis. Informal caregivers may be family members, friends, neighbors, or church volunteers. They provide care to people of any age (i.e., children, adults, older persons) for as little as one hour a month

to as much as 24 hours a day, seven days a week. The kinds of care that may be needed and provided by caregivers can include: personal care (e.g., bathing, feeding, toileting); health-related services (e.g., giving medications, rehabilitation, IV therapies); transportation/escort services (e.g., driving someone to the doctor and shopping); household/homemaking services (e.g., housecleaning, storm windows, snow removal); meal preparation; shopping and errands; linkage tasks (e.g., finding and arranging for services); and financial and legal management. Depending upon one's functional impairment. caregivers may provide as much care within the home as is provided in a nursing home with a full-time, round-the-clock paid staff.

It is estimated that approximately 80% of the care that is given to the functionally impaired in the United States is provided by family members and other informal caregivers. According to Evelyn Greb, division chief of long-term care with the San Diego Area Agency on Aging, it should be recognized just how much caregivers give to society. "Besides owing them a tremendous debt on humanitarian grounds, we have a tremendous self-interest in seeing that family caregivers are not left to cope alone. Without their willingness to nurse sick spouses and parents, taxpayers would have to fund the institutionalization of many more people. If we take the Older Women's League estimated figure of 76% as the proportion of care provided by family rather than paid services, you can come up with a $2 billion bill in San Diego County alone."1 It is further estimated that for every one person receiving care in

a nursing home, there are two in the community receiving the same level and amount of care.

"Respite care" means that someone is substituting on a temporary basis for a caregiver to give him or her relief -- a break from providing care. Respite care takes many forms: the person receiving the care may go into a nursing

home for a weekend or a couple of weeks, or he/she may attend an adult day care center or other community agency 1-5 days a week, or someone may go into the home for an hour/day/weekend/month to give the caregiver a respite or break.

Caregivers need to know that they are not alone! For example, the number and
proportion of older persons continues to increase and will do so until 2050
AD. The 85+ age group is the fastest growing in the United States. In
addition, 56% of all American women (the most likely caregivers) are in the
workforce. 25-33% of workers in the workforce have some caregiving
responsibilities for older relatives. And 40% of the workforce are working
parents -- who may therefore be "sandwiched" between caregiving
responsibilities for both young children as well as for frail elderly
dependents.2

In a study of family caregivers and their support by the Benjamin Rose
Institute, it was found that, "Even though most caregivers reported only mild.
or moderate amounts of stress, their lives were still affected by caregiving
responsibilities:

Four out of five caregivers indicated that some aspect of helping was difficult, tiring, or emotionally upsetting.

Six out of ten said they had no clear idea about what was best to do in the caregiving situation.

More than half said the person they cared for made too many demands on them."3

Respite care and adult day care are extremely important for caregivers for many

reasons.

A major, new study by the University of California has shown that there is
a significant shift in the acuity of care throughout the whole health care
system (i.e., hospitals are now high-tech trauma centers -- many patients
who used to be cared for in hospitals are now being treated in sub-acute
transitional care units or nursing homes -- those who used to be in nursing
homes are now in community services and/or at home -- and those who used to
be in adult day care are now in senior centers and at home). This shift in
acuity has resulted in a greater burden for a longer period of time on
families. Patients are sicker and older, and require more services.4 In
addition, home health care services are much more complex and high-tech as
well, sometimes requiring that families be trained to do complex procedures
such as IV chemotherapy and dialysis at home.

Despite the fact that respite care and adult day care are very important

services which permit families to continue giving care at home and despite

the fact that surveys show that respite care heads the list of services

requested by caregivers, about "... 80% of all respite services nationwide. are underused."5 These services are underutilized for a number of

reasons:

(a) There is a need for community education and publicity so that families know what services exist and where to locate them.

(b) Family dynamics may be very complex -- caregivers often feel guilty about asking for help, be reluctant to give up control, and may "need to be needed".

Professionals who do formal assessments of family needs often recommend more services to families than the families ever make use of. Therefore, fears that families will "come out of the woodwork" to use services seem unfounded, particularly with respite care and adult day care.

To further assess the potential "substitution effect," information concerning the nature of caregivers is required. The majority of these data are from the Informal Caregivers Survey (ICS), a component of the 1982 Long Term Care Survey (LTCS) conducted by the Department of Health and Human Services to study disabled elderly persons living in the community. The following are some of the findings from that study (U.S. House of Representatives, 1987; Dunn and Gallaway, 1986):

(a) Approximately 2.2 million caregivers aged 14 or older provided unpaid

assistance to 1.2 million noninstitutionalized elderly disabled
persons. The average age of the caregiver population was 57.3 years.
71.5% were female, 28.9% were wives, and 13% were husbands.

(b) While fewer than 10% of the caregivers reportedly quit their jobs to
care for a disabled relative or friend, a sizable proportion (69%) of
all caregivers had to rearrange their schedules, reduce their work
hours, and/or take time off without pay to fulfill caregiver
obligations.

(c) Family caregivers provide between 80-90% of the medically related care, personal care, household maintenance, transportation, and shopping needed by older persons.

(d) Approximately 80% of noninstitutionalized disabled elderly persons rely solely on informal care.

(e) 75% of all noninstitutionalized care (home health care, homemaker services, adult day care) is privately financed by the elderly and/or their relatives. Arnong the 1.1 million impaired older persons who

received home care in 1982, 41% paid for these services

out-of-pocket. The average payment was $164/month.

(1) Informal caregivers, and family members in particular, are motivated

largely by love and affection toward the older person, a sense of
gratitude and a desire to reciprocate help that was provided by the
elderly person at an earlier stage, as well as by allegiance to a more
generalized societal norm of spousal or filial responsibility.

(g) While there are many benefits of caregiving, there also are many
stressors. These include:

⚫ personal limitations from restrictions on one's social and

professional life;

⚫ competing demands from family members and work obligations; ⚫ the care recipient's emotional and physical demands arising from erratic behavior, confusion and forgetfulness, and incontinence; ⚫ emotional strain giving rise to depression, anxiety, lowered morale, and emotional exhaustion; and

⚫ financial and family strain.

Similar qualitative results were found in studies in New York and Minnesota (Thorsheim, 1987).

In spite of these stressors, supporters of adult day care argue that studies have not substantiated nor supported fears about either the "woodwork" or "substitution" effect. In addition, they claim that the concerns are pernicious if their effect is to slow the development of adult day care utilization.

Without respite care, burnout of the caregivers may occur. Burnout occurs when the caregiver is overwhelmed and overloaded with caregiving and emotional and physical fatigue results. The caregiver is giving out more than he/she is receiving in return. In addition, research has shown that the health of caregivers may be seriously compromised by caregiving. Caregivers may suffer knee and back problems (from lifting, transfering, and wheeling the patient), depression and severe sleep disturbance (especially if caring for someone with Alzheimer's disease who "wanders" at night), and financial and emotional stress. Indeed, some caregivers have become drug and alcohol abusers to seek relief from their enormous burden.6

In a recent report on information released by the National Institute on Aging and reported in Health Policy Week, the impact of Alzheimer's disease was spelled out. "Professional care for victims of Alzheimer's disease and related dementias cost more than $13 billion in 1985, excluding medical expenses. In addition, NIA researchers estimate that the disease caused a $43 billion

productivity loss for that year."7 Due to the nature of the disease, caring

for a victim of Alzheimer's disease is one of the most difficult kinds of care

that anyone -- health care professional or family member -- can provide.

The problem of caregiving is beginning to have an enormous impact on young to middle-aged adults who are trying to care for children, hold down jobs, and

care for frail, disabled children and elderly. A number of surveys of employees of corporations have shown that at any given time, approximately 25-28% of employees are involved in caregiving for an older relative. Some employers are seeing an increase in absenteeism, repeated tardiness, inappropriate phone calls to and from work to check up on a relative at home, inappropriate sick days and vacation leaves, distraction and lack of concentration on the job, lack of motivation, and overall poor job performance by employees caring for an elderly relative. "One study of 69 companies in the greater New York area indicates that approximately half are aware of caregiver needs and many have identified employee problems in the workplace (e.g., lateness, absenteeism, etc.). Few have programs designed specifically for caregivers. However, larger companies and those with a predominantly female workforce have more policies and programs that can accommodate caregiver needs. Various strategies [are] currently being tried by companies to support *9 caregivers."

In fact, if the burden of care becomes too great, caregivers may quit work completely to care for someone. This means that the caregiver (usually, but not always, a woman) who no longer has income and withdraws from Social Security and pension plans, is at risk of becoming a poverty-stricken older person him/herself. Therefore, while society may save money in the short run (by having a frail older person cared for by a relative), in the long run these caregivers will become poor older persons in need of services themselves.

There is a lot of documentation to show that families are not "deserting" their elderly, but that providing care is becoming more difficult. This is because people are living much longer (4, 5, or even 6-generation families are no longer uncommon), they are sicker (with multiple long-term chronic problems), there are more of them, there are more women in the workforce rather than at home, and our society is quite mobile so families are often geographically separated. In addition, there is some anecdotal evidence that even after a patient enters a nursing home, families still provide a great deal of informal care (e.g., families visit their relatives in the nursing home to socialize and visit and feed relatives, take them home for visits and shopping, celebrate holidays and birthdays, and take home laundry to do).

Caregivers can be assisted in many ways to help them carry on with their caregiving. For one thing, they should not be praised for being "super