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Who Are California’s Informal Caregivers?

Caring for a loved one with a disabling health condition forever changes the lives of families and caregivers. While helping a friend or relative can be positive in many ways, the effects on caregivers often can be devastating: financial pressures, legal quandaries, health problems, emotional turmoil and depression. But in California, there is help. Eleven nonprofit Caregiver Resource Centers (CRCs) throughout the state each year provide support services to more than 15,000 families and caregivers of adults affected by chronic health conditions.

This fact sheet provides a profile of California caregivers, combining statistics from published studies and data gathered from families who have contacted one of the 11 Caregiver Resource Centers (CRCs) throughout the state.

The term caregiver refers to anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson’s disease; a mother-in-law with cancer; a father with Alzheimer’s disease; a son with traumatic brain injury; a partner with AIDS.

Informal caregiver and family caregiver are terms that refer to unpaid individuals such as family members, friends and neighbors who provide care. These individuals can be primary or secondary caregivers, full time or part time, and can live with the person being cared for or live separately. (Formal caregivers are care providers associated with a service system or hired independent providers.)

It is the dedicated families—not institutions—who provide most of the long-term care in California, often at great financial, physical, and emotional sacrifice. Care can range from handling a loved one’s transportation, finances and medications to managing feeding tubes, injections, physical therapy and personal hygiene. In fact, according to a recent estimate, California caregivers annually provide unpaid care services with a market value equal to $45 billion (AARP Public Policy Institute, 2007).

Magnitude

Depending on definitions and criteria used, estimates of the number of informal California caregivers vary widely. For example:

• 1.8 million households are caring for someone aged 50 or older, i.e., 16% of California’s 11,502,870 households (Scharlach, et al., 2003).
• 4 million family members are caring for someone over the age of 18 (AARP Public Policy Institute, 2007).

Gender and Age

According to the California Statewide Survey of Caregivers (Scharlach, et al., 2003):

• 75% of California caregivers are women
• 60% of California caregivers are married
• 51 years is the average age of California caregivers

Of caregivers served by the California Caregiver Resource Centers (CRC Characteristics 2005):

• 77% are women, of whom 37% are daughters; 25% are wives of the person needing care.
• 70% of caregivers served by the CRC system are married• 59 years is the average age of CRC caregivers; fully 12% are over age 80.

According to the CRC characteristics data, their age distribution is:

Ethnicity

Scharlach’s study (2003) shows diverse backgrounds for caregivers:

• 61% White/Caucasian
• 25% Hispanic/Latino
• 6% Black/African American
• 5% Asian
• 3% Other ethnicities

Most (86%) were born in the U.S. Among immigrants, Mexico is the most frequent country of origin (6% of caregivers).

The CRC system’s caregivers (2005) have a slightly different mix:

• 74% White/Caucasian
• 11% Hispanic/Latino
• 9% Black/African Americans
• 4% Asian caregivers
• 2% Other ethnicities

California’s over-18 population, according to the U.S. Census Bureau (2000), is:

• 61% White/Caucasian
• 14% Hispanic/Latino*
• 14% Asian
• 7% Black/African American
• 4% Other ethnicities

California’s over-60 population (U.S. Census Bureau, 2000) is:

• 69% White/Caucasian
• 14% Latino*
• 10% Asian
• 5% Black/African American
• 2% Other ethnicities

*For the purposes of this analysis, Hispanic/Latino refers to those who identify as Hispanic/Latino, regardless of race.

Who Is the Care Recipient?

Although the Scharlach, et al. study (2003) and the CRC data (2005) use slightly different groupings to identify who is receiving the caregiver’s help, both show that caregivers most often are aiding a parent or spouse/significant other:

* Includes grandparents, sons, daughters, other extended family members, neighbors and unknown

Employment

About half of California’s caregivers are employed outside the home. Among employed caregivers, 71 percent are full-time and 29 percent are part-time employees (Scharlach et al., 2003). Of nonemployed caregivers, about half (49%) said they were retired and 8% were taking a leave of absence. Asked how caregiving activities affected their job status, they said they had:

• Reduced work hours (13%)
• Changed jobs (4%)
• Other job impacts (6%)

Caregiving causes many employees to miss work. In the two weeks before the study interviews 21 percent of employed caregivers had missed work, from arriving late or leaving early to taking three or more days off. One half of these employees missed at least 16 hours of work during this two week period.

Among the CRC System’s caregivers under the age of 65, a similar picture emerges: about half are employed, with about 70% of them full-time employees and 30% part-time (2005). When all caregivers were asked whether their employment status had changed due to caregiving activities, they said they had:

• Reduced work hours (8%)
• Quit their job (11%)
• Other job impacts (16%)

Approximately 12% of those who utilized California’s Paid Family Leave benefit in 2004-05 were family caregivers (Paid Family Leave 2005).

Education Level

Compared to the overall population of California caregivers, as described by Scharlach et al. (2003), the CRC System serves a group that is similar in terms of education level:

Income Level

At least one-fourth of California’s caregivers have very low annual household incomes—$20,000 less (Scharlach et al., 2003, reporting 2001 income). A large proportion of California’s caregivers live in lower-middle-income households, with between $20,000 and $40,000 income annually (26% of the Scharlach study group and 43% of the CRC group). The CRC system tends to serve a less affluent population, with only 31% of respondents reporting income above $40,000 a year (compared to 49% of Scharlach’s group).

* Respondents were asked whether their annual income was above or below $30,000, then asked to specify their income more precisely. While most answered the more specific question, a small percentage responded only to the first question.

The Experience of Caregiving

Time

Because the care demands are generally greater, caregivers who seek help from the CRCs spend much more time each week providing care than does the general population of California’s caregivers (Scharlach et al., 2003):

• CRC caregivers typically spend 84 hours a week (median), with an average of 85.4 hours (CRC system 2004). While many caregivers get no help from unpaid helpers, some do receive such assistance: the average is 8 hours of help weekly from unpaid family members, friends or volunteers.
• California caregivers as a whole (Scharlach et al., 2003) typically spend 14 hours a week (median) and get about 10 hours of help weekly from other unpaid family members, friends or volunteers (median, with average not available). Caregivers of persons who have severe memory problems or dementia spend significantly more time (an average of 53.7 hours per week) than do caregivers of people without these disorders (an average of 34.1 hours per week).

More CRC clients are long-time caregivers, compared to the general California caregiver population (Scharlach et al., 2003). While most of the duration-of-care categories used in the two information sets differ, a few direct comparisons are possible.

Just over one-third (34%) of the CRC caregivers (2004) started providing care within the previous two years. In California’s overall caregiver group (Scharlach et al., 2003) just over one-fifth (21%) had begun providing care within the past year, while more than half (54%) had given care from one to five years.

Health Problems of the Person Needing Care

Information about the care recipient’s health problems was gathered in different ways from the general California caregiving population (Scharlach et al., 2003) and from caregivers served by the CRC System (2004). The Scharlach study asked respondents to identify the health problems of the care recipient, without setting apart the main problem (primary diagnosis) from secondary problems. In order to provide a more analytical typology, the illnesses in the first chart below were collapsed into three categories: Mental health problems (including behavior or emotional problems); severe memory/cognitive disorders; and physically based problems. Most (93%) of care receivers had physical illness and most of these individuals (82%) had multiple physical problems. More than a third (36%) had severe memory problems or dementia; most of these people also had physical problems (94% of those with mental health conditions and 92% of those with memory problems). Thus, the results add up to more than 100 percent.

In contrast, the CRCs ask caregivers to identify only the primary diagnosis of the care recipient, so the results add up to 100 percent but do not show the presence of multiple problems. Fully 62% of the CRC care recipients suffered from cognitive problems caused by unspecified dementia or Alzheimer’s disease.

Impact of Caregiving

The study of California’s caregivers (Scharlach et al., 2003) compared caregivers of people having severe memory problems or dementia to caregivers of people with other types of problems. As shown by the following table, more caregivers of those with cognitive impairment felt the negative impacts of emotional stress, sleep interruption, physical strain and financial hardship and fewer enjoyed excellent or very good health.

In the CRC System, assessments of caregivers from July through December 2005 (CRC Annual Report 2006) show:

• High burden—an average score of 18 on the Adapted Zarit Interview, a standardized tool, measuring caregiver burden (scores may range from 0 to 48, with higher scores showing higher burden and a score above 16 indicating "high burden").
• Many are depressed—almost half (45%) appear to have mild to moderate depression, with a score of 16 or higher on the Center for Epidemiologic Studies Depression scale (CES-D), a standardized tool to measure depression.
• Many (63.4%) report experiencing anxiety or depression in the past 12 months.
• Most report themselves to be in excellent (13.4%) or good (52.6%) health.
• Almost a third (29.4%) say their health is worse than it was six months ago.

Sources

A Profile of Family Caregivers: Results of the California Statewide Survey of Caregivers (2003) by Andrew Scharlach, Barbara Sirotnik, Shel Bockman, Max Neiman, Christen Ruiz, Teresa Dal Santo. Berkeley, CA: Center for the Advanced Study of Aging Services, University of California Berkeley.

California Caregiver Resource Centers Aggregate System Data Report on Caregiver and Care Receiver Characteristics (2005). San Francisco, CA: Family Caregiver Alliance.

California Caregiver Resource Centers Annual Report for Fiscal Year 2005-06 (2006). San Francisco, CA: Family Caregiver Alliance.

Paid Family Leave Year in Review July 1, 2004 – June 30, 2005 (2005). Sacramento, CA: California Employment Development Department.

U.S. Census Bureau, Census 2000 of Population and Housing, Summary File 1.

Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving (2007) by Mary Jo Gibson and Ari N. Hauser, Washington, DC: AARP Public Policy Institute.

Resources

Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
Website: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance seeks to improve the quality of life for caregivers of adults through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

In its role as the Statewide Resources Consultant, FCA collects statewide data on caregivers and consults to the California Department of Mental Health on program development and public education related to the California Caregiver Resource Centers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, head injury, Parkinson’s and other debilitating health conditions that strike adults.

This fact sheet was prepared by Family Caregiver Alliance in cooperation with California’s statewide system of Caregiver Resource Centers. Reviewed by Andrew Scharlach, Ph.D., Kleiner Professor of Aging, School of Social Welfare, University of California, Berkeley. Funded by the California Department of Mental Health. © 2007 Family Caregiver Alliance. All rights reserved.