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Family Caregiver Alliance, as the Statewide Resources Consultant to the California Department of Mental Health, maintains a state-wide database on California family caregivers of adults with cognitive impairment. This important data-base generates information on the need for and impact of caregiver support services, identifies trends and directions for service development, and assists in laying a foundation for new policy initiatives. It provides a profile of caregivers of loved ones with Alzheimer’s, stroke, Parkinson’s and other disorders that require long-term care. The sample con-sists of 3,476 California caregivers who completed a comprehensive in-home assessment by one of the state’s 11 Caregiver Resource Centers in 2001.

Characteristics of Care Recipients

Care recipients were more likely to be female (55%) than male (45%), with 83% residing at home with their spouse or other relatives. Ranging in age from 18 to 104 years, they averaged 75.1 years of age. Almost one quarter (23%) were 85 years of age and older. Approximately one-third (30%) of the care recipients were diagnosed with Alzheimer’s disease, followed by other de-generative brain disease/dementia (24%), stroke (21%), Parkinson’s disease (10%), traumatic brain injury (4%), Huntington’s disease (3%), and multiple sclerosis, ALS or brain tumor (2% each).

In addition to heavy care needs due to memory and behavior problems, over half (52%) of care recipients had difficulty in carrying out three or more activities of daily living such as bathing, dressing, and eating. Nearly nine out of ten (89%) reported difficulty with one or more instrumental activities of daily living (e.g., preparing meals, using the telephone, managing money, taking medications (see Table 1).

Table 1
Top Functional Problems of Care Recipients

Source: California CRC Uniform Assessment Database, 2001, N=3,476

Characteristics of Caregivers

Caregivers were predominantly female (74%), and over half were either wives (32%) or daughters/daughters-in-law (33%). Caregivers ranged in age from 20 to 93 years with an average age of 60.5 years (see Table 2). More than one in five (22%) was 75 years of age and older. Approximately half (51%) of the caregivers had been providing care for less than three years. The family caregivers were most likely to be white (79%), followed by Hispanic/Latinos (9%), African-Americans (7%), Asians (3%) and others (2%). In Los Angeles and the San Francisco Bay Area, however, the proportion of nonwhite caregivers served was about 40% and 39%, respectively. Over half (52%) of the California caregivers had annual household incomes under $36,000 (2001 dollars).

Table 2
Age Breakdown of Family Caregivers

Source: California CRC Uniform Assessment Database, 2001, N=3,476

Over half (54%) of the family caregivers under the age of 65—those most likely to be in the labor force—were, in fact, employed and juggling caregiving and job responsibilities. However, 15% of caregivers under the age of 65 said they had quit their jobs to give care, and another 15% reduced their work hours. Caregivers reported providing an average of 81 hours of care a week, yet they only received an average of 12 hours of help a week in caregiving from family and friends.

Research has shown that prolonged caregiving has negative effects on the emotional and physical health of caregivers. The caregivers served by California’s CRCs are at risk for experiencing serious emotional and physical health problems of their own. More than two-thirds (70%) of the family caregivers reported significant health problems and 42% said their health was worse than it had been five years before. Well over half (58%) of California caregivers seeking help and support from a CRC demonstrated clinical symptoms of depression on the CES-D depression scale. The most common self-reported health problem of family caregivers was depression (see Table 3). Mental health concerns remain a serious and pervasive problem.

Table 3
Most Common Self-Reported Health
Problems of Family Caregivers

Source: California CRC Uniform Assessment Database, 2001, N=3,476

Winter 2004

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