Services for California Caregivers
For more than two decades, California’s Caregiver Resource Centers (CRCs) have supplied information, education, respite and support to hundreds of thousands of California families and friends who care at home for loved ones suffering from chronic, debilitating health conditions.
It is these dedicated families—not institutions—who provide most of the long-term care in California, often at great physical, emotional, and financial sacrifice. The care they offer is often complex—feeding tubes, injections, physical therapy, medication management. They care for people with challenging illnesses—Alzheimer’s disease, stroke, Parkinson’s disease, traumatic brain injury, ALS, Huntington’s disease—conditions that cause not only physical difficulties, but cognitive problems as well.
The toll is high: of CRC clients, nearly half show clinical signs of depression; many have health problems themselves. Yet, they provide a stunning 89 hours of care each week.
California’s statewide network of 11 CRCs, operating under the California Department of Mental Health, provides support services that help family and informal caregivers continue their care—often for years, sometimes for decades—and avoid premature institutionalization of their loved ones.
The CRC system includes the regionally-based Caregiver Resource Centers; the state Department of Mental Health (DMH); and the Statewide Resources Consultant (SRC), which assists with system development, capacity building, research and public education. The SRC, housed at Family Caregiver Alliance, collects data about caregivers in California for use by DMH, other state departments, legislators and program developers to ensure that cost-effective services for family caregivers respond to pressing needs, utilize best practices and pinpoint gaps in the service system.
These nonprofit organizations are authorized under state law (the Comprehensive Act for Family Caregivers of Brain-Impaired Adults of 1984) to provide a single point of entry for support services for caregivers throughout the state. Each CRC offers a core component of support programs:
In addition, each CRC offers unique materials and services specific to the ethnic and cultural demographics within its region.
According to data collected by the Statewide Resources Consultant in the past year (fiscal year 2006-07), 40,231 families and individuals received one or more CRC services:
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23,393 people attended CRC education and training events;
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6,783 new clients went through the intake process (extended telephone consultation to determine the families’ situation and immediate needs);
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3,730 clients received comprehensive assessment;
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13,561 clients received in-person family consultation with CRC professional staff (a total of 36,955 hours);
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1,586 families received respite assistance (financial assistance to allow primary caregiver a break to attend to personal or health needs). Thousands more called with inquiries for general information and referrals.
At the end of fiscal year 2006-07, 5,697 family caregivers were on respite waiting lists at CRCs in California. The average client wait-time for CRC respite assistance was 24 months, representing a decrease from the previous year of about two months.
Who’s Giving Care?
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Recognized now as a Baby Boomer issue, the average caregiver served by the CRCs is a 59-year-old woman who has been caring for her father or husband with Alzheimer's disease for three to four years.
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Caregivers range in age from 17 to 100 years. Nearly half are 60 or older—those who are at highest risk of health problems themselves. Seventeen percent are 75 or older. About one in four (21 percent) is between 36 and 50 years old.
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Most (77 percent in FY0607) of caregivers are women, most often (47 percent) an adult child of the care receiver. Thirty-five percent are spouses, and 9 percent have another (nonfamily) relationship with the care receiver. Most caregivers (71 percent) served by the CRC system are likely to live with the care receiver. This profile has shifted dramatically over the last fifteen years, reflecting current demographics in the state. In 1990, the distribution was: spouse (55 percent); daughter (16 percent); other relative or nonrelative relationship (29 percent). A much higher proportion (87 percent) lived with the care receiver.
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Nearly half (49 percent) of caregivers under the age of 65 also work outside the home, full time (31 percent) or part time (18 percent). In 1990, only 28 percent of caregivers were employed outside of the home.
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Of working caregivers, 15 percent quit jobs or reduced hours to provide care, thus reducing their income, retirement benefits, and access to health insurance. Seven percent were on leave of absence, family medical leave, or early retirement due to caregiving.
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Nearly half (43 percent) of CRC family caregivers show clinical symptoms of depression. Caregivers generally report high stress due to their caregiving situation, regardless of the care receiver’s specific diagnosis. Sixty-one percent of caregivers self-report feeling depressed or anxious. Overall, 54 percent score in the “high burden” range on the Adapted Zarit Interview in the CRC caregiver assessment.
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Nearly one in three (28 percent) caregivers say their physical health is now worse than it was six months ago. One-third of caregivers (32 percent) report their overall health as “fair” or “poor.” Among other illnesses, they suffer from:
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high blood pressure (31 percent)
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back and neck problems (27 percent)
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arthritis (26 percent)
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high cholesterol (25 percent)
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sleep disturbances (21 percent)
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cardiovascular problems (13 percent)
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CRC caregivers provide an average of 89 hours of care each week—about 12.7 hours per day, seven days a week.
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They receive little help from others. The average caregiver gets only 11.1 hours a week of unpaid help from friends, family, or volunteers, and half (50 percent) of caregivers report receiving no unpaid help at all. The average amount of paid help caregivers report receiving is 9.5 hours a week.
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CRC caregivers are increasingly diverse. In fiscal year 2006-07, 69 percent reported their ethnicity as white; 15 percent as Hispanic; 8 percent African American, 6 percent Asian/Pacific Islander, and 8 percent reported other ethnic groups. In 1990, the ethnic distribution was white (88 percent), Hispanic (4 percent), African American (5 percent), and other (3 percent).
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According to our data, the greatest caregiver needs are for general information (65 percent), emotional support (51 percent), respite care (50 percent) and help finding direct care services (28 percent). Other expressed needs are for financial advice and aid (17 percent), help in managing the care receiver’s behavioral problems (17 percent), and legal information (15 percent).
Who’s Getting Care?
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Care receivers range from 18 to 103 years old, with an average of 77 and a median age of 80. Ninety percent of care receivers are age 60 or older; 69 percent are 75 years of age and older; and nearly a third (30 percent) are 85 and older. In 1990, the average age of care receivers was 70.
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Care receivers suffer from Alzheimer's disease (31 percent), other dementias and/or degenerative diseases (28 percent), stroke (27 percent), traumatic brain injury (6 percent), Parkinson’s disease (4 percent), Huntington’s disease (1 percent). Three percent have brain tumors or other non-degenerative disorders.
Primary Diagnosis of Care Receiver
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More care receivers are female (59 percent). In contrast, in 1990, most care receivers were male (60 percent).
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Few care receivers lived alone (15 percent) or in nursing homes (2 percent) when the caregiver first contacted a CRC for assistance.
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The median annual household income range for the care receiver population was between $20,000 and $39,999—well below California’s median income, which was estimated at $74,801 for a family of four in 2006.
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Forty-nine percent of care receivers experienced the onset of their disease/disorder less than two years ago; 10 percent have lived with a cognitive disease/disorder for 10 years or longer.
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Care receivers have significant care needs. They have an average of ten functional problems in their ability to perform daily tasks. See below for the most frequent problems reported.
Care Receivers’ Functional Problems
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Managing money (89 percent)
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| Taking medications (88 percent) |
| Difficulty with household tasks & meal preparation (83 percent) |
| Requiring supervision (75 percent) |
| Bathing/showering (70 percent) |
| Impaired mobility (68 percent) |
| Dressing (65 percent) |
| Incontinence (51 percent) |
| Eating (36 percent) |
| Wandering (25 percent) |
| Of the care receiver’s behavioral problems, engaging in behavior that is potentially dangerous to self or others was the most bothersome or upsetting to their caregivers. |
Statewide Resources for Caregivers
The Statewide Resources Consultant (SRC) role is fulfilled by Family Caregiver Alliance (FCA).
Highlights for SRC activity in fiscal year 2006-07 are:
- Development and dissemination of online and print newsletters that reach a combined subscription of nearly 29,000 consumers and professionals. Dissemination for the year included 12 issues of California Caregiver; 22 issues of Caregiving Policy Digest; and three issues of Update. All publications are posted on www.caregiver.org. FCA also maintains www.californiacrc.org and www.link2care.net (a closed online service program for CRC clients statewide).
- Development and dissemination of two new Fact Sheets, Caregiver Health and California Caregivers: A Profile. These were additions to a library of some 60 Fact Sheets, many in Chinese and Spanish as well as English.
- Dissemination of Caregivers at Risk: A Public Health Concern, the first in the new “Caregiving in California Issue Paper” series.
- Preparation of testimony for legislative committees and commissions, and development of an Ethics and Policy Framework to promote inclusion of caregivers in public policy.
- Development and coordination of capacity-building trainings for CRC staff.
- Consolidation of data across CRC system and production of standardized quarterly and annual reports.
- Participation in state and national conferences, as well as a wide variety of advisory committees.
- Facilitation of four statewide educational teleconference workshops for consumers, including one targeted for Spanish-speaking caregivers.
- Utilization of telemedicine networks to train caregivers through rural health clinics and hospitals in northeastern California.
Tracking Caregivers’ Well-Being
In fiscal year 2006-07, 4,295 CRC clients statewide were randomly selected to receive the CRC caregiver satisfaction survey. The overall response rate was 35 percent, an 8 percent return rate increase over last year. The percentages below are drawn from the survey responses of 1,497 family caregivers who received one or more CRC services:
- 95 percent said that since receiving services from a CRC, they felt more competent as a caregiver.
- 96 percent said the information and services they received increased their knowledge and awareness of community resources.
- 95 percent stated that they better understand their care recipient's disease/condition.
- 92 percent agreed that as a result of receiving services, they are now taking better care of their own health (physically and mentally).
Caregivers’ lives change forever when their loved ones fall ill. With enormous dedication, families are providing care at home as long as they can, as an alternative to institutionalization of their loved ones. With help from the California Caregiver Resource Centers, they succeed.
Download California Caregiver Resource Center System Program Highlights Fiscal Year 2006-07 (.pdf | 117 kb)
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