AARP Research Insights on Caregiving

AARP Research on caregiving highlights U.S. adults' experiences with and feelings about caregiving, caregiving resources, and legislation that supports caregivers.

FAMILY CAREGIVING

Family caregiving is a common experience. 

• One-third (32%) of registered voters ages 18 and older say they were caregivers in the past, one-fifth (21%) are currently caregivers, and half (49%) expect to be a caregiver in the future. [Source: U.S. Voters’ Views on Support for Family Caregiving, fielded April 2023.]
  
  
• Roughly one-fifth of U.S. adults 18 and older will experience caregiving at some point, with the large majority providing care for older adults. Most caregivers are women, and the average age of caregivers is 49.4, with one-quarter between 18 and 34. [Source: Caregiving in the U.S., 2020, national sample fielded May 28–June 17, 2019.]

Time and money are the top challenges for family caregivers. 

• When caregivers were asked to identify the biggest challenge they face, their answer is overwhelming — time. [Source: U.S. Voters’ Views on Family Caregiving, fielded April 2023.]
  
  
• Three-quarters of caregivers (78%) report regular out-of-pocket costs related to caregiving, with $7,242 the average amount spent [Source: 2021 Caregiving Out-of-Pocket Costs, fielded March 15–April 25, 2021.]
  
  
• On average, family caregivers spend one-quarter (26%) of their income on caregiving activities, with household (52%) and medical (17%) costs making up the largest share of overall caregiver expenses. Only 5% of caregivers reported having no caregiving-related expenses in the past year. [Source: 2021 Caregiving Out-of-Pocket Costs, fielded March 15–April 25, 2021.]

Caregiving is often unpredictable, negatively affecting working caregivers.

• Half (50%) of working caregivers reported making work scheduling changes, including going in early, leaving late, or taking time off from a job because of caregiving responsibilities.  Many have made even more drastic work scheduling changes, including taking a leave of absence (32%), shifting from full-time to part-time work or reducing hours (27%), turning down a promotion (16%), moving to a new team (16%), not working for a period (16%), and changing employer (13%). [Source: Working While Caregiving: It’s Complicated, fielded September–October 2023.]
  

Working caregivers want — and need — flexibility.

• Two-thirds (67%) of family caregivers have difficulty balancing their jobs with caregiving duties. For many, this has resulted in disruptions to their work, including taking a leave of absence (32%), shifting from full- to part-time work or reducing hours (27%), and turning down a promotion (16%). [Source: Working While Caregiving: It’s Complicated, fielded October 2023.]

• Nearly half (45%) of working caregivers said their employer gave them access to a flexible work schedule, and among those with access, eight in 10 said they used it (80%) and found it very helpful (84%).  Telework was both widely used (72%) and highly rated (84% of those who used it found it very helpful). [Source: Working While Caregiving: It’s Complicated, fielded September–October 2023.]

• Only a quarter of working caregivers said they were offered paid leave designated for adult caregiving, but it’s a popular benefit — two-thirds (67%) of them took advantage of it, and eight in 10 (79%) of those who used it rated it as very helpful. Among those with access to unpaid family leave, nearly 60% opted to take it. [Source: Working While Caregiving: It’s Complicated, fielded September–October 2023.]

Stress and anxiety are common among caregivers.

• Despite the challenges many face, caregivers also report positive measures of well-being from their caregiving experience. More than eight in ten caregivers say they can think clearly (86%), can deal with problems well (85%) and feel useful (85%) because of their caregiving experience. More than eight in ten also say that caregiving gives them a sense of purpose (82%) and helps them to feel good about themselves (81%). [Source: A Look at U.S. Caregivers’ Mental Health, fielded May 2023.]

But so too are the positive effects of caregiving.

• Despite the challenges many face, caregivers also report positive measures of well-being from their caregiving experience. More than eight in ten caregivers say they can think clearly (86%), can deal with problems well (85%) and feel useful (85%) because of their caregiving experience. More than eight in ten also say that caregiving gives them a sense of purpose (82%) and helps them to feel good about themselves (81%). [Source: A Look at U.S. Caregivers’ Mental Health, fielded May 2023.]

Caregivers fill an important role, often serving as"care coordinator" with the health care system.

• Most caregivers interact with their care recipients’ health care providers, with the majority having contact with family doctors (66%), pharmacists (52%), and nurse practitioners (47%). Caregivers also must balance caring for another’s health while caring for themselves, and caregiving responsibilities may compound their health issues. [Source: Caregiving and Health Care, fielded April 2024.]

Communication is generally positive between caregivers and health care providers.

• Nearly nine in 10 caregivers (89%) report that when talking to a care recipient’s health care provider their questions are answered. In addition, similar percentages say information is provided in an understandable way (88%) and that the information is helpful (87%). [Source: Caregiving and Health Care, fielded April 2024.]

FAMILY CAREGIVING LEGISLATION

Family caregivers want Congress to show them the money.

• When asked what they would like Congress or their state government do, one third of family caregivers ages 18 and older say they would like increased access to health care (33%) and financial support (33%). When given a choice between financial support or support to do other things, most family caregivers would like to see Congress help them cover their expenses (58% vs. 31%). [Source: U.S. Voters’ Views on Family Caregiving, fielded April 2023.]

Midlife and older voters almost unanimously support choice for long-term care.

• Support is high among voters 50 and over for increasing resources for in-home care (87%) and for requiring Medicaid to guarantee home-care services as a choice for older adults who need long-term care (86%). [Source: National 50+ Voter Survey on Family Caregiving and Long-Term Services and Supports, fielded August 2–12, 2021.]
  
  
• Across party lines, these voters overwhelmingly support offering services to help a loved one who needs long-term care stay at home for as long as possible (Republicans, 82%; Democrats, 88%; Independents, 84%), and nearly all believe people should be able to choose where long-term care services are provided (85%, 90%, and 86%, respectively). [Source: National 50+ Voter Survey on Family Caregiving and Long-Term Services and Supports, fielded August 2–12, 2021.]

Voters also voice support for family caregivers, albeit with some variation across political parties.

• Roughly seven in ten (68%) registered voters age 18 and older believe it is extremely or very important for Congress to expand services to enable older adults to live independently at home, and nearly six in ten (57%) believe it is similarly important for Congress to provide support to unpaid family caregivers. In both cases, nearly nine in ten Democrats and three-quarters of Republicans believe such support is important. [Source: U.S. Voters’ Views on Family Caregiving, fielded April 2023; see also Voters Want Candidate Who Supports Caregiving Legislation.]
  
  
• Irrespective of political party, registered voters 18 and older say they would be more likely to vote for candidates who support nine legislative proposals — including those that would support family caregivers through paid leave or tax credits or those that would improve nursing homes and long-term care services. [Source: U.S. Voters’ Views on Family Caregiving, fielded April 2023; see also Voters Want Candidate Who Supports Caregiving Legislation.]

Midlife and older adults support some form of tax relief for family caregivers.

• Nine in 10 (90%) U.S. adults 50 and older strongly support a Congressional proposal to provide employed family caregivers with a tax credit up to $5,000 — based on how much they spend to care for an older family member. Support for the proposal is high regardless of political ideology (95% liberal, 92% moderate, and 86% conservative). [Source: Support for Family Caregiver Tax Credit is High Among Adults 50+, fielded October 2024.]
  
  
• There was also consistent support for the proposed family caregiver tax credit between men and women (90% and 92%, respectively) as well as across racial/ethnic groups (Black: 92%, Hispanic: 91%, and white: 91% strongly or somewhat supporting). [Source: Support for Family Caregiver Tax Credit is High Among Adults 50+,  fielded October 2024.]

Support is high for Medicare helping to cover the costs of providing in-home care, but willingness to pay a small increase in premiums for it is less supported.

• More than nine in ten (91%) U.S. adults 50 and older express support for Medicare helping to cover the costs of providing care to enrollees who need assistance with their activities of daily living (ADLs such as bathing, dressing, or eating).  Moreover, six in 10 (61%) adults 50 and older say they would be willing to pay a small increase in Medicare premiums for access to in-home care, yet nearly one-quarter (23%) are unsure. [Source: Expanding Benefits in Medicare: Views of Adults Ages 50 and Older, fielded October 2024.]

When asked for their preference, expanding Medicare to cover home care aide services is the clear winner.

• When asked to express their preference between two statements, by a margin of 3:1 (75% vs. 24%), U.S. adults 50 and older say they would like to see Medicare expand to cover home-care aide services rather than continue to focus on its current coverage.  Expanding Medicare to cover home-care aide services is the preference for both age groups and genders. [Source: Expanding Benefits in Medicare: Views of Adults Ages 50 and Older, fielded October 2024.]

CAREGIVING CONCERNS

Caregiving anxiety is not limited to caregivers.

• More than two-thirds (68%) of voters are concerned they won’t have enough money to afford the care they need (68%); 65% are concerned that they won’t be able to live independently; and roughly six in ten worry they will be a burden on their family (62%), will need to live in a nursing home with poor conditions (61%), or will not have a family member who is able to care for them (56%) as they age. [Source: U.S. Voters’ Views on Family Caregiving, fielded April 2023.]
  

 

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