Race and gender differences in perceived caregiver availability for community-dwelling middle-aged and older adults

The majority of care for older adults with chronic conditions is provided in the community by informal caregivers, usually family members. Family caregivers generally want to provide care, but a number of pressures may ultimately affect the availability of family caregivers to provide this care in the future. These pressures include the aging of the population, which is resulting in more people in need of caregiving assistance, hospital policies that encourage cost savings via early discharges, and observed decreases in the utilization of nursing home care (Pastor, Makuc, Reuben, & Xia, 2002). Demographic trends (e.g., high divorce rates, lower birth rates, highly mobile society, more people living alone) also introduce pressures and work against needs for increased informal caregiver availability. Sociological research has shown that Americans have become increasingly isolated socially over the past few decades (McPherson, Smith-Lovin, & Brashears, 2006), and the merging of these pressures for more informal care with demographic trends of increased social isolation could lead to a geriatric health care crisis if informal caregivers are relied on to carry ever-increasing portions of the care burden but fewer family members and other social contacts are available, willing, or capable of providing such care. Despite concerns about the future availability of informal caregivers, there are surprisingly little data on the perceived availability of informal caregivers for middle-aged or older adults who may, at some point in the near future, require such care. We identified only one large-scale study of perceived caregiver availability among the general (e.g., non-disabled) population, which was published over 10 years ago and based on a sample of young-old Mexican Americans and non-Hispanic Whites in the San Antonio, Texas area (Talamantes, Cornell, Espino, Lichtenstein, & Hazuda, 1996). In that study, men were more likely to identify their spouses as potential caregivers than women, and participants with multiple chronic conditions were less likely to report that they had someone to provide care for them than participants with none or only one chronic condition. While little is known about perceived caregiver ability, more information is available about individuals who actually become caregivers and about disabled persons who lack informal caregiving assistance. A recent meta-analysis of 229 studies reported that 69% of the informal caregivers were women (Pinquart & Sorensen, 2006). Women have also been found to take on more caregiving tasks, to report more care recipient problems, and to experience more distress due to caregiving than male caregivers (Pinquart & Sorensen, 2006; Yee & Schulz, 2000). A similar meta-analytic review documented that White caregivers are more likely to be spouses, whereas African American families utilize adult daughters as caregivers to a greater extent (Pinquart & Sorensen, 2005). A recently published update of national statistics on caregiving found an increasing trend for declining levels of caregiving assistance and increasing numbers of disabled older adults reporting no formal or informal caregiving assistance (Wolff & Kasper, 2006). People receiving informal care were older and more severely impaired at the time of the most recent survey. Similarly, Lima and Allen (2001) found that about 21% of disabled older adults had either partially or completely unmet needs for care, and unmet needs for care were highest among disabled individuals who were female, African American or Hispanic, living alone, and divorced or separated. The REasons for Geographic and Racial Differences in Stroke (REGARDS) study is a large national cohort study examining the causes of geographic and racial differences in stroke incidence and mortality. Community-dwelling African Americans and Whites over the age of 45 are being recruited from across the country to participate in a structured telephone interview and an in-home evaluation to assess known and suspected risk factors for stroke (Howard et al., 2005, 2006). As part of the intake interview, REGARDS participants are asked about the availability of an informal caregiver in the event of a serious illness or disability, and some related questions concerning the characteristics of the potential caregiver. These data provide a unique opportunity to study perceived caregiver availability and to assess predictors of caregiver availability in a large national sample. Our goals for the present manuscript include: 1. To describe the frequency of perceived caregiver availability in this large national sample; 2. To determine whether perceived caregiver availability varies by race, gender, age, marital status, or other demographic variables; 3. To determine the multivariable profile of individuals at greatest risk of not being able to identify a likely informal caregiver; and 4. To describe the characteristics of the individuals who are identified as potential caregivers.