From the National Alliance for Caregiving and AARP. (May 2020)
African American caregivers more often report co-residing with their recipient (45 percent compared to 28 percent in 2015) and less often report their recipient lives in their own home (38 percent compared to 56 percent in 2015)
Caregivers who are Asian American (51 percent), Hispanic (48 percent), and African American (45 percent) are more likely than Whites (36 percent) to report their recipient lives in their home (the caregiver’s home)
Caregivers whose recipient lives with them, in the caregiver’s home, report providing care for 37.4 hours each week, more than those not living together (14.6 hours per week on average).
Caregivers who have no other help (paid or unpaid) provide 27.4 hours of care weekly, more than those who share care (21.7). Similarly, primary caregivers provide more hours of care (26.7 vs. 18.3 hours among non-primary caregivers)
African American caregivers report providing more hours of care each week (31.2 hours on average) than either White (21.2 hours) or Asian American (24.1) caregivers. Hispanic caregivers provide 26.0 hours of care weekly (significantly more than White caregivers)
Even though their care recipients tend to be younger, both Hispanic (71 percent) and African American (70 percent) caregivers more often help with at least one ADL than either White (55 percent) or Asian American (49 percent) caregivers
Help with Other Key Activities Change Focus: 2020 vs. 2015 Î African American caregivers are more often doing each of these three support activities, as compared to 2015:
Monitoring recipient’s condition (74 percent vs. 62 percent in 2015)
Communicating with care professionals (71 percent vs. 56 percent in 2015)
Advocating (62 percent vs. 47 percent in 2015)
African American and Hispanic caregivers (67 percent each) more often help with medical/nursing tasks than do White caregivers (52 percent).
African American (54 percent) and Hispanic caregivers (49 percent) more often are in high intensity care situations than either White (35 percent) or Asian American (32 percent) caregivers.
Those caring for a spouse/partner are most often in the high-intensity category (59 percent), more so than those caring for a parent/parent-in-law (35 percent), other relative (44 percent), or non-relative (31 percent).
Likewise, caregivers who live with their recipient more often are in a high-intensity care situation (61 percent vs. 27 percent not living together).
Primary caregivers more often are in a high-intensity care situation (44 percent) than non-primary caregivers (33 percent).
Those who have been providing care for five years or longer more often are in high-intensity care situations (47 percent vs. 38 percent of those who have been providing care for less time).
Women caregivers are more often the primary caregiver (67 percent vs. 59 percent of men caregivers)
Children helping to provide care is more common among non-White caregivers, with about one in five reporting their presence: 21 percent Hispanic, 20 percent African American, and 17 percent Asian American compared to 9 percent White.
Caregiver Health
Caregiver self-rated health seems to have declined during the past five years; alarmingly, the stress associated with caregiving may exacerbate declines in health that occur with age.
Four in 10 caregivers (41 percent) consider their health to be excellent or very good, down significantly from 2015 (48 percent), while 1 in 5 say it say it is fair or poor (21 percent), up significantly from 2015 (17 percent)41 and comparable to other research.
The drop-off in caregiver self-rated health since 2015 is happening across most subgroups of caregivers. Caregivers report significantly worse health across all hours of care and ages of recipients; among both low- and high-income caregivers; among all marital statuses; and among both those who had a choice and those who had no choice in providing care.
Groups that rate themselves in better health include the following:
White caregivers (45 percent rate their own health as excellent or very good), compared to African American (34 percent) or Hispanic (35 percent) caregivers
Caregivers who feel they had a choice in taking on their role (45 percent rating excellent or very good vs. 38 percent had no choice)
Higher-income caregivers (47 percent in excellent or very good health vs. 31 percent of those with less than $50,000 in household income)
More educated caregivers (51 percent of those with a college degree or higher vs. 41 percent of those with some college vs. 31 percent of those with a high school diploma or less)
At the other end of the health spectrum, caregivers who more often self-rate as being in fair or poor health include:
Those who feel alone (30 percent vs. 16 percent of those who do not feel alone) Caregivers who live with their care recipient (27 percent vs. 16 percent of those not living together)
Those in high-intensity caregiving situations (27 percent vs. 16 percent in medium to low intensity situations)
Primary caregivers (23 percent vs. 16 percent non-primary
Caregivers who report lesser or lower health status are the same caregivers reporting that their role has made their health worse, including:
Those in high-intensity caregiving situations (32 percent say it has made their health worse vs. 16 percent in medium- to low-intensity situations)
High-hour caregivers (33 percent when providing 21 or more hours of care weekly vs. 18 percent of lower-hour caregivers)
Caregivers who live with their care recipient (29 percent vs. 18 percent not living together)
Those who feel they had no choice in taking on their role (32 percent vs. 12 percent had a choice)
Primary caregivers (25 percent vs. 18 percent non-primary)
White (24 percent) and Asian American (27 percent) caregivers more often report that caregiving has made their health worse, as compared to Hispanic caregivers (17 percent); and while Asian American caregivers are older than Hispanic caregivers, caregiver age has no effect on the health impact of caregiving.
One out of three caregivers of a spouse/partner report caregiving have made their health worse (33 percent), compared to 21 percent of those caring for all others.
As the length of caregiving rises, so too does the reported impact on caregiver health, for the worse: 27 percent of those who have provided care for a year or longer report caregiving making their health worse vs. just 17 percent of those who have cared for less than a year.
Nearly across the board, caregivers who say caregiving has made it difficult to take care of their own health report a higher-intensity or demanding care situation: they perform more hours of care weekly, perform more ADLs and IADLs, more often live with their recipient, and report their recipient has multiple condition categories.
They more often say they are in worse health and more often report feeling physical strain, emotional stress, and loneliness.
When caregivers feel alone, 72 percent report feeling high emotional stress, compared to just 24 percent of those who do not feel alone.
Nearly half of caregivers who had no choice in providing care feel a high amount of emotional stress (48 percent vs. 23 percent who had a choice).
Asian American caregivers more often report feeling high levels of emotional stress (44 percent), more so than either African American (29 percent) or Hispanic (32 percent) caregivers.
Women who provide care are also more stressed (39 percent vs. 33 percent of men who are caregivers).
Those in high-intensity care situations more often feel alone (29 percent vs. 16 percent medium to low-intensity situations), as do those providing 21 or more hours of care (30 percent vs. 17 percent caring for 20 or fewer hours weekly).
Caregivers who feel they had no choice in taking on care are more likely to feel alone (29 percent vs. 12 percent who had no choice).
Primary caregivers are more likely to report feeling alone (27 percent vs. 11 percent of non-primary)
Hispanic (61 percent) and African American (59 percent) caregivers more often report that caregiving provides them with a sense of purpose, more than either White (46 percent) or Asian American (48 percent) caregivers.
Despite performing more hours of care and care tasks, resulting in higher intensity care situations, Hispanic and African American caregivers are not as emotionally stressed as their White and Asian American counterparts
Perhaps suggesting that this sense of purpose or the cultural expectation to care for one’s family or community helps to buffer some of the emotional stress of caregiving. Further research is needed.
Finances
Hispanic and African American caregivers report lower household incomes than White or Asian American caregivers. Hispanic caregivers most often have children or grandchildren living in their home (47 percent). White caregivers more often report living in a rural area (16 percent). African American (19 percent), Hispanic (15 percent), and Asian American (17 percent) caregivers more often report attending school while providing care than White caregivers (7 percent)
African American caregivers report 2.4 financial impacts as a result of providing care, more than either Asian American (1.5) or White (1.4) caregivers, while Hispanic caregivers (2.0) have more impacts than Whites.
Of note, these racial/ethnic disparities in financial impacts emerge when caregivers have household incomes of $50,000 or more, while caregivers with household incomes under $50,000 show comparable financial impacts, irrespective of their racial/ethnic background
White, African American, and Hispanic caregivers are each more often working at a position that is paid hourly (55 percent), while Asian American caregivers more often report having a salaried job (55 percent)
Lower-income caregivers more often are in high-intensity situations (46 percent vs. 37 percent of those with $50,000 or more in household income), as are caregivers with less than a college degree (43 percent vs. 35 percent of those with a bachelor’s degree or higher).
African American caregivers (55 percent) more often are the sole unpaid caregiver for their recipient, more so than White (44 percent) or Asian American (43 percent) caregivers.38
Caregiver Training and Information Needs
Many caregivers could use more information on or help with caregiving topics, with 62 percent needing help with at least one topic.
Caregivers most commonly want information about keeping their recipient safe at home and about managing their own stress (26 percent each)
One in four want help figuring out forms, paperwork, and eligibility for service (25 percent).
About one in eight need help with critical care decisions for their recipient, such as making end-of-life decisions or choosing home care, assisted living, or a nursing home (13 percent each).
Some caregivers also want help for things like managing their own finances (13 percent), using technology for care support (12 percent), and managing challenging behaviors of their recipient (11 percent). Few want non-English-language materials (3 percent).
Respite Services
Nearly 4 in 10 caregivers feel having respite services available would be helpful (38 percent).
Only 14 percent of caregivers report having used respite services, where someone provided care to the recipient to give the caregiver a break. This relatively low respite use is comparable to other studies