Abstract
The evolving composition and experiences of the family caregiver workforce have profound ramifications for public policy but are not well understood. Drawing on the linked National Health and Aging Trends Study and National Study of Caregiving, we found that the numbers of family caregivers providing help to older adults increased by nearly six million between 2011 and 2022, rising from 18.2 million to 24.1 million. Among older adults receiving care, network size was stable, at about two caregivers per older adult at both points in time. However, in 2022, family caregivers were assisting older adults who were younger, more likely to be male and better educated, and less likely to have dementia. We found few changes in competing work and child care responsibilities, weekly care hours, and caregiving-related difficulty. A smaller number of family caregivers were assisting fewer older adults with dementia, but in this group, co-residence increased by 25 percent, average care hours increased by 50 percent, and employment decreased. For family caregivers as a whole, challenges persist, and for those assisting people with dementia, tailored surveillance and effective support programs are needed.
Millions of older adults in the United States manage basic health and functioning needs each day with the help of family (broadly defined) caregivers. Greater rates of childlessness, smaller and more geographically dispersed families, and increasing female labor-force participation are commonly raised concerns about the demands on family caregivers as they attempt to meet the needs of the aging baby-boom generation.1 Simultaneously, the care delivery and payment landscape has undergone radical transformation to promote value-based care and aging in place—efforts that amplify the demands placed on the family caregiver workforce.2 Ramifications of these issues are magnified in the context of long-standing gaps in the availability, competence, and working conditions of paid caregivers.3 Collectively, these issues have motivated policy action to support the care economy and, in 2022, the first National Strategy to Support Family Caregivers.4
Understanding the changing composition and experiences of family caregiving has never been more important, but it is challenging to assess. The care needs of older adults receiving assistance have been shifting: Dementia prevalence has been declining,5 whereas multimorbidity has increased.6 A range of strategies may be used to compensate for disabilities—people may use assistive devices; modify their home environments; move to new residential settings; or perform daily activities differently, less often, or with help—and reliance on these strategies has shifted over time.7,8 Factors such as family structure, geographic proximity, and economic resources affect entry into caregiving1,9 and the use of paid care;10 these factors are also subject to change.11,12 All of these factors are highly affected by context. For example, families caring for older adults with dementia have larger care networks, provide more care hours, and are more likely to use paid care and share care tasks;13 this group of family caregivers may be especially vulnerable to shifts in the demographic landscape.
Because of the multidimensional and interwoven nature of disability and care, understanding trends in the demography of family caregiving requires consistent measurement for well-characterized, generalizable samples of people who receive and provide help. This study drew on a platform that is uniquely poised to examine this topic. We examined the first and most recently available rounds of the National Health and Aging Trends Study (NHATS) and its linked National Study of Caregiving (NSOC). These linked surveys have contributed knowledge regarding the composition and experiences of family caregivers of older adults, including key subpopulations,13–15 but analyses to date have not yet addressed temporal trends in the demography of family caregiving. We addressed three research questions. First, we asked whether the number and composition of older adults receiving family care changed between 2011 and 2022. Second, we asked whether the size and profile of older adults’ family caregiver workforce changed with respect to sociodemographic characteristics and aspects of the family caregiving experience. Finally, we asked whether the profile of family caregiving shifted with respect to older adults’ dementia status.
Study Data And Methods
Data Sources
NHATS is a nationally representative survey of US adults ages sixty-five and older that draws on Medicare enrollment files for its sampling frame. Information is collected during in-person interviews about a wide range of characteristics relating to health and functioning. With sampling weights, NHATS is designed to produce nationally representative estimates of the older population. NSOC is administered to up to five relatives and unpaid helpers (hereafter referred to as family caregivers) of older adults receiving assistance with self-care, mobility, or household activities for health or functioning reasons. NSOC was administered by telephone in 2011 and by telephone and online in 2022.16 In each year, approximately 60 percent of those invited to respond participated; with sampling weights, NSOC represents family caregivers of beneficiaries ages sixty-five and older.17,18
Study Participants
To address our first research question, we identified older adults living in residential care and community settings who received help with daily activities from one or more family caregivers in the prior month. We defined daily activities as self-care (eating, dressing, bathing, and using the toilet), mobility (getting out of bed, getting around inside, and getting outside), or household activities (laundry, meals, shopping for groceries or personal items, and bills and banking) if help was received for health and functioning reasons. Our sample included 2,408 older adults in 2011 and 1,856 in 2022. To address research questions 2 and 3, we identified family caregivers of older adults who met the above-described eligibility criteria. The final sample included 1,969 family caregivers in 2011 and 2,122 in 2022.
Measurement
Older adults’ sociodemographic characteristics included age, sex, race, ethnicity, educational attainment, marital status, and Medicaid enrollment. Measures of the older adults’ care context included care network size, receipt of paid help, self-rated health, residential setting, and dementia status. We drew on a composite measure of dementia from information reported by self-respondents and proxy respondents and cognitive tests. Participants were classified as having “probable dementia” on the basis of a doctor’s diagnosis; a score indicating likely dementia on a dementia screening instrument administered to proxy respondents;19,20 or impairment based on cognitive tests that evaluate memory, orientation, and executive function (with a score of ≥1:5 standard deviations below the mean in at least two of three domains).21
Caregiver characteristics included age, sex, marital status, self-rated health, relationship to the older adult, and travel time to older adults’ place of residence. The nature and intensity of care provision referred to duration of caregiving in years and hours of care per week. Competing responsibilities included the presence of a co-residing child younger than age eighteen and being employed. For caregivers who were employed, we measured work productivity loss in the past month, reflecting percentage of work time lost because of both absenteeism (missed hours of work due to caregiving in relation to typical hours worked) and presenteeism (impact of caregiving on productivity while at work), as previously described.15,22 Measures of physical, financial, and emotional difficulties associated with providing care were based on reported level of difficulty in each domain (ratings of 4 or 5 were categorized as “substantial”).23 Finally, we examined the use of caregiving-related supports and the types of assistance provided.
Data Analysis And Estimation
We examined the estimated number and characteristics of older adults receiving family care, the estimated number and characteristics of family caregivers, and aspects of caregiving responsibilities and experiences. For categorial variables, we present weighted percentages for the characteristics of older adults and family caregivers in 2011 and 2022. Cross-wave differences were tested using linear regression, where we regressed the characteristic of interest on an indicator for survey year, with 2011 as the omitted category. For categorical variables with more than two levels, we created dichotomous measures for each level that compared people in a particular level with all other people. For continuous measures, we examined cross-wave differences in the means of the measures and used linear regression models to test the significance of cross-wave differences. All analyses were performed using Stata, version 15.1, and were weighted and adjusted for the complex survey designs of NHATS and NSOC.
Limitations
We acknowledge several limitations. This was an observational study and was not poised to disentangle the multifaceted underlying causes of observed trends, nor was it intended to provide insight into the adequacy of help experienced by older adults. Study findings do not generalize to important subpopulations, such as youth caregivers of older adults, family caregivers assisting children or working-age adults, and family caregivers of older adults who are living in long-stay nursing facilities. The care delivery landscape varies by geography,24,25 which our study was not equipped to examine. The dementia algorithm used in this study does not reflect a comprehensive clinical evaluation and is subject to error. Reliance on a single-round categorization of dementia status may have led to small differences in classification because of learning effects associated with repeated testing in the continuing sample.26 Finally, the population estimates presented in this study provide important context in capturing the prevalence, characteristics, and experiences of family caregivers of older adults, but they do not adequately convey the profound human and financial toll of caregiving that may unfold at an individual level.
Study Results
Numbers And Characteristics Of Older Adults Receiving Family Care
The estimated numbers of older adults living in residential care facilities or community settings who received family care increased by more than one-third, from 9.4 million in 2011 to 12.6 million in 2022 (exhibit 1). Within this group, the number of older adults without dementia increased from 6.7 million to 10.0 million, whereas the number of older adults with dementia decreased slightly, from 2.7 million to 2.6 million. Older adults with dementia thus accounted for a smaller proportion of those receiving family care, decreasing from 29.0 percent in 2011 to 20.4 percent in 2022. Care network size, as expressed by the average number of caregivers per older adult receiving care, was stable (1.6 people in both years for those without dementia and 2.1 and 1.9 people in 2011 and 2022, respectively, for those with dementia).
Exhibit 1.
Characteristics of older US adults receiving family care in 2011 and 2022, stratified by dementia status
| All | No dementia | Dementia | ||||
|---|---|---|---|---|---|---|
| Characteristics | 2011 | 2022 | 2011 | 2022 | 2011 | 2022 |
| Sample size | 2,408 | 1,856 | 1,593 | 1,371 | 815 | 485 |
| Weighted no. (millions) | 9.4 | 12.6 | 6.7 | 10.0 | 2.7 | 2.6 |
| Proportion (%) | 100.0 | 100.0 | 71.0 | 79.6**** | 29.0 | 20.4**** |
| Mean no. of caregivers (of any type) | 1.7 | 1.6* | 1.6 | 1.6 | 2.1 | 1.9 |
| Age, years (%) | ||||||
| 65–74 | 32.2 | 41.7**** | 38.7 | 46.6*** | 16.5 | 23.0* |
| 75–84 | 38.4 | 35.1* | 37.6 | 34.3 | 40.2 | 38.2 |
| 85 and older | 29.5 | 23.2**** | 23.7 | 19.1*** | 43.3 | 38.8 |
| Female sex (%) | 68.1 | 64.2** | 69.2 | 63.5*** | 65.5 | 66.5 |
| Race and ethnicity (%) | ||||||
| Non-Hispanic White | 74.6 | 71.7 | 76.7 | 72.8* | 69.6 | 67.6 |
| Non-Hispanic Black | 10.2 | 11.7* | 9.4 | 11.6** | 12.1 | 12.1 |
| Hispanic | 10.9 | 11.6 | 10.6 | 10.8 | 11.7 | 14.5 |
| Other | 4.3 | 5.0 | 3.3 | 4.7 | 6.5 | 5.9 |
| Some college or more (%) | 38.1 | 52.5**** | 42.9 | 57.1**** | 26.5 | 34.9** |
| Marital status (%) | ||||||
| Married or partnered | 45.6 | 47.1 | 48.6 | 50.0 | 38.5 | 36.3 |
| Divorced or separated | 10.5 | 15.5*** | 10.9 | 16.5*** | 9.4 | 11.6 |
| Widowed | 39.9 | 32.1**** | 36.9 | 29.2**** | 47.2 | 43.3 |
| Never married | 3.9 | 5.2 | 3.5 | 4.3 | 4.9 | 8.8* |
| Has Medicaid (%) | 21.6 | 23.7 | 19.7 | 21.6 | 26.0 | 31.8 |
| Uses paid helpa (%) | 13.7 | 14.6 | 11.9 | 12.9 | 18.0 | 21.3 |
| Fair or poor self-rated health (%) | 49.5 | 47.9 | 48.0 | 47.8 | 53.0 | 48.1 |
| Residential careb (%) | 14.3 | 11.7* | 12.8 | 10.3 | 18.0 | 16.9 |
Source Authors’ analysis of data from the 2011 and 2022 National Health and Aging Trends Study.
Notes Study sample included US adults ages 65 and older who lived in residential care and community settings. All percentages are column percentages except proportion (row percentage).
Help is with self-care, mobility, or household activities for health and functioning reasons; activities are described in the text.
Excludes nursing home residents.
p < 0.10
p < 0.05
p < 0.01
p < 0.001
Older adults receiving family care were predominantly female, non-Hispanic White, and married or widowed. The sociodemographic profile of older adults shifted during the eleven-year period toward younger ages, male sex, and higher educational attainment. We observed changes in marital status toward greater rates of divorce or separation and lower rates of widowhood; these shifts were driven by the changing composition of marital status in older adults without dementia. No notable change was observed with respect to levels of Medicaid enrollment, receipt of paid help, or self-rated health.
Numbers And Characteristics Of Family Caregivers
The estimated numbers of family caregivers of older adults increased from 18.2 million in 2011 to 24.1 million in 2022. Paralleling the shifting share of older adults with dementia among those receiving care, the estimated number of family caregivers assisting an older adult with dementia decreased from 6.0 million (33.2 percent) to 5.2 million (21.8 percent), whereas the number assisting an older adult without dementia increased from 12.2 million to 18.9 million (exhibit 2).
Exhibit 2.
Characteristics of family and unpaid caregivers in 2011 and 2022, stratified by older US adults’ dementia status
| All | No dementia | Dementia | ||||
|---|---|---|---|---|---|---|
| Characteristics | 2011 | 2022 | 2011 | 2022 | 2011 | 2022 |
| Sample size | 1,969 | 2,122 | 1,233 | 1,538 | 736 | 584 |
| Weighted no. (millions) | 18.2 | 24.1 | 12.2 | 18.9 | 6.0 | 5.2 |
| Proportion (%) | 100.0 | 100.0 | 66.8 | 78.3**** | 33.2 | 21.8**** |
| Age, years (%) | ||||||
| Younger than 55 | 41.8 | 36.3** | 41.7 | 35.9** | 42.0 | 37.7 |
| 55–64 | 26.5 | 22.3** | 24.5 | 21.9 | 30.6 | 23.8** |
| 65–74 | 18.9 | 24.8*** | 20.7 | 24.9* | 15.2 | 24.3*** |
| 75 and older | 12.8 | 16.6*** | 13.1 | 17.3** | 12.2 | 14.3 |
| Female sex (%) | 61.5 | 62.5 | 60.1 | 62.8 | 64.2 | 61.1 |
| Marital status (%) | ||||||
| Married or partnered | 65.7 | 63.9 | 65.3 | 63.7 | 66.3 | 64.5 |
| Divorced or separated | 13.3 | 11.6 | 13.1 | 11.2 | 13.7 | 12.7 |
| Widowed | 5.5 | 6.8 | 5.5 | 7.0 | 5.7 | 6.2 |
| Never married | 15.5 | 17.8 | 16.2 | 18.1 | 14.3 | 16.5 |
| Fair or poor self-rated health (%) | 20.3 | 19.7 | 20.0 | 19.7 | 20.8 | 19.7 |
| Relationship to older adult (%) | ||||||
| Spouse | 20.7 | 23.0 | 23.4 | 24.5 | 15.3 | 17.7 |
| Adult child | 48.6 | 40.7**** | 45.7 | 38.4*** | 54.5 | 49.1 |
| Other family member | 21.5 | 24.4 | 20.3 | 24.3 | 23.7 | 24.7 |
| Nonfamily | 9.2 | 11.9 | 10.6 | 12.8 | 6.5 | 8.5 |
| Travel time to older adult (%) | ||||||
| Live together | 41.3 | 44.8 | 42.2 | 43.2 | 39.4 | 50.7*** |
| 10 minutes or less | 31.7 | 28.3 | 32.5 | 29.4 | 30.0 | 24.5 |
| 11 to less than 30 minutes | 14.2 | 16.3 | 13.0 | 16.9** | 16.6 | 14.2 |
| 30 minutes or more | 12.9 | 10.5 | 12.3 | 10.5 | 14.0 | 10.6 |
Source Authors’ analysis of data from the 2011 and 2022 National Study of Caregiving.
Notes US older adults were ages 65 and older and lived in residential care and community settings. All percentages are column percentages except proportion (row percentage).
p < 0.10
p < 0.05
p < 0.01
p < 0.001
Most family caregivers were female, were married, and reported good or better self-rated health. The sociodemographic profile of family caregivers shifted during the eleven-year period toward older age groups and less representation of adult children; these changes were more notable among family caregivers of older adults without dementia. Nearly nine in ten caregivers lived within thirty minutes of the person they assisted, and nearly half (44.8 percent in 2022) lived in the same household. Notably higher rates of co-residence were observed among caregivers of older adults with dementia, increasing by 25 percent (from 39.4 percent in 2011 to 50.7 percent in 2022).
Family Caregiving Arrangements And Responsibilities
Family caregiving arrangements were long-standing and of increasingly short duration (less than one year; exhibit 3). A comparable proportion of family caregivers lived in a household with a child younger than age eighteen in both 2011 and 2022 (15.8 percent and 17.0 percent, respectively). About four in ten family caregivers were employed at both points in time, and work productivity loss due to caregiving was comparable among all family caregivers (6.6 percent in 2011 and 7.9 percent in 2022). Among those caring for older adults with dementia, the share who were working fell from 42.5 percent in 2011 to 34.6 percent in 2022; this decline was not evident among those caring for older adults without dementia.
Exhibit 3.
Aspects of family care for older US adults in 2011 and 2022, stratified by older US adults’ dementia status
| All | No dementia | Dementia | ||||
|---|---|---|---|---|---|---|
| 2011 | 2022 | 2011 | 2022 | 2011 | 2022 | |
| Duration of caregiving (%) | ||||||
| Less than 1 year | 6.9 | 12.4**** | 8.0 | 13.1*** | 4.7 | 9.8** |
| 1–3 years | 34.3 | 28.0*** | 33.6 | 28.0** | 35.6 | 28.0** |
| 4 years or more | 58.8 | 59.7 | 58.4 | 58.9 | 59.7 | 62.2 |
| Competing responsibilities (%) | ||||||
| Household with child younger than 18 | 15.8 | 17.0 | 15.3 | 16.6 | 16.7 | 18.6 |
| Employed | 41.0 | 39.8 | 40.2 | 41.2 | 42.5 | 34.6* |
| Mean work productivity lossa | 6.6 | 7.9 | 5.5 | 7.5 | 8.6 | 9.3 |
| Experience of providing help (%) | ||||||
| Substantial physical difficulty | 6.4 | 7.3 | 4.8 | 6.4 | 9.5 | 10.4 |
| Substantial financial difficulty | 6.7 | 6.0 | 5.2 | 6.1 | 9.8 | 5.9* |
| Substantial emotional difficulty | 13.6 | 13.3 | 10.6 | 11.7 | 19.7 | 19.2 |
| Caregiving-related supportsb (%) | ||||||
| Support group use | 4.1 | 2.5* | 3.1 | 1.8* | 6.0 | 5.0 |
| Respite care use | 12.9 | 9.3*** | 8.9 | 7.0 | 21.0 | 17.3 |
| Received training | 6.4 | 8.0 | 5.1 | 7.2* | 8.9 | 11.1 |
| Help provided in prior month (%) | ||||||
| Self-carec | 48.9 | 50.4 | 42.2 | 45.9 | 62.5 | 66.4 |
| Mobilityd | 71.3 | 67.5 | 68.4 | 64.8 | 77.2 | 77.3 |
| Household activitiese | 94.6 | 95.7 | 94.5 | 95.2 | 94.8 | 97.3* |
| Transportation | 80.0 | 76.8 | 81.9 | 77.9* | 76.1 | 72.7 |
| Medication management | 59.4 | 52.9*** | 54.7 | 47.6** | 68.9 | 71.9 |
| Health care activities (in past year) | 71.6 | 59.1**** | 66.5 | 53.9**** | 81.8 | 77.5 |
| Making appointments | 60.4 | 45.4**** | 53.7 | 39.8**** | 73.9 | 65.5** |
| Speaking to medical providers | 54.8 | 46.8*** | 48.1 | 42.1** | 68.3 | 63.7 |
| Insurance matters | 40.6 | 27.6**** | 36.8 | 24.5**** | 48.2 | 38.9** |
Source Authors’ analysis of data from the 2011 and 2022 National Study of Caregiving.
Notes Study sample included US adults ages 65 and older who lived in residential care and community settings. All percentages are column percentages.
Percent of work time lost in the past month because of absenteeism and presenteeism (defined in the text).
Use within the prior year.
Includes eating, dressing, bathing, and using the toilet.
Includes getting in and out of bed, getting around inside, and leaving home to go outside.
Includes laundry, cleaning, hot meals, shopping, and bills and banking.
p < 0.10
p < 0.05
p < 0.01
p < 0.001
Family Caregiver Experiences And Use Of Supportive Services
A comparable proportion of family caregivers reported substantial physical, financial, and emotional difficulty at both points in time (between 6 percent and 13 percent in 2022, depending on the type of difficulty) (exhibit 3). This pattern occurred despite reductions in the use of support groups (from 4.1 percent to 2.5 percent) and respite care (from 12.9 percent to 9.3 percent). Nearly all family caregivers reported assisting with household activities at both time points. However, we observed decreases in the provision of assistance with health-related tasks, including managing medications, making appointments, coordinating care, and handling insurance. Reductions in the provision of assistance with health care activities were less prominent among family caregivers of older adults with dementia.
Care Hours
Mean hours of care provided by family caregivers were comparable in 2011 and 2022, both overall (17.3 and 16.6 hours per week, respectively) and for those assisting older adults without dementia (15.3 and 13.9 hours, respectively). However, among family caregivers of older adults with dementia, weekly average hours of care provided increased by nearly 50 percent, from 21.4 in 2011 to 31.0 in 2022 (exhibit 4).
Exhibit 4. Family caregiving hours, by the dementia status of older US adults, 2011 and 2022.
Source Authors’ analysis of data from the 2011 and 2022 National Study of Caregiving. Note p < 0.001 for difference between 2011 and 2022 for dementia.
Discussion
This study contributes new knowledge of recent trends in the demography of family caregiving to older adults in the United States. We found a larger number of family caregivers assisting a population of older adults who were incrementally younger, better educated, and less likely to have dementia in 2022 compared with 2011. Family caregivers were predominantly spouses and adult children, although they were less likely to be adult children in 2022. We observed stability in older adults’ care network size and in the experiences of family caregivers with respect to competing employment and child-rearing responsibilities; care hours; and caregiving-related physical, financial, and emotional difficulties, despite reductions in use of supportive services such as respite care and support groups.
Our findings run counter to a prevailing policy narrative that has emphasized dire concern regarding the effects of increasing demands being placed on family caregivers of older adults.9,27 In the context of declines in long-stay nursing home use and shifts toward community living,28,29 we found no evidence to suggest that the availability of family care declined between 2011 and 2022 or that the caregiving experience has become more challenging. Nevertheless, the lack of improvement in experiences is sobering: In 2022, a substantial share of family caregivers had competing demands of work (40 percent) and child care (17 percent) while spending an average of seventeen hours per week on care, and 6–13 percent reported substantial caregiving difficulties (depending on the type)—figures that did not change during the study period. Moreover, our analysis reflects the leading edge of the baby-boom generation entering advanced ages; the number of adults ages eighty-five and older in the United States is projected to triple by 2050,30 portending growth in the number of family caregivers in need of supportive services.
An additional key set of study findings relates to differential shifts in the experience of family caregivers for older adults with dementia. Although the share of family caregivers and older adults affected by dementia declined during 2011–22, we observed three trends that are noteworthy: less employment, more co-residence, and striking increases of 50 percent in average hours. It is reassuring that these trends were not accompanied by corresponding increases in caregiving-related difficulty or contractions in the size of helping networks. Nevertheless, results do suggest that for the smaller share of family caregivers assisting older adults with dementia, concerns about increased demands may be warranted. Study findings reinforce the importance of tailored surveillance and support for family caregivers providing dementia care.31
Our results contribute to a larger body of evidence demonstrating that caregiving consequences are not evenly distributed.2 Some people will never be a family caregiver or will provide little care over a short duration, whereas for others, the demands of caregiving are extraordinary. Demands of caregiving are greatest for those who help a person with substantial care needs (such as those with dementia13 or nearing the end of life14) and those from racial and ethnic minority groups who are more likely to assist people with extensive care needs in circumstances that involve scarce economic resources.32 Challenges are exacerbated when caregivers are in poor health themselves; have a lack of choice in assuming the caregiving role; and, for the substantial proportion of family caregivers who are employed, work in low-wage jobs with limited flexibility. Systems-level breakdowns exacerbate challenges when caregivers must bridge disjointed information, services, and payments across siloed health care and long-term services and supports delivery environments.33,34
The support provided by family caregivers has important individual, family, and societal consequences,2,35,36 and sustaining this workforce is a high priority. Policies and programs to offset adverse caregiving-related consequences exist, but they do not represent a coherent strategy. Local, state, and federal initiatives are a patchwork that is uneven in availability and largely symbolic in magnitude.2,37 The National Family Caregiver Support Program is a flagship federal program that is specifically devoted to addressing the needs of family caregivers, but its budget has remained relatively flat, increasing from $150 million at its inception in 2001 to $200 million in 2024.38 Paid family leave has been enacted by selected states and employers to afford time-limited partial income replacement to workers with caregiving responsibilities.39 Medicaid home and community-based supports indirectly benefit family caregivers through expanded service offerings to low-income people with disabilities; waivers can be used for caregiver support, but they make up a trivial proportion of spending.29 The Medicare hospice benefit, the newly introduced voluntary Guiding an Improved Dementia Experience Model, and Department of Veterans Affairs Caregiver Support Program40 are exemplary nation-wide programs that support the family unit, but they are limited to those meeting eligibility criteria.
The 2018 Recognize, Assist, Include, Support, and Engage Family Caregivers Act and the 2022 National Strategy to Support Family Caregivers represent important progress toward a cohesive framework in support of the care economy. The National Strategy articulates hundreds of recommendations and actions to be pursued by federal and nonfederal partners.4 Early policy progress is encouraging. For example, the 2024 Medicare Physician Fee Schedule introduced a billing code to enable reimbursement for the training and education of family caregivers of Medicare beneficiaries with chronic and disabling conditions.41 The National Strategy calls for enhanced infrastructure for surveillance and monitoring of family caregivers.4 Our work reinforces the importance of understanding the success of efforts to attenuate caregiving demands through policy and systems change, as well as in monitoring impacts for key subgroups. For example, it will be important to assess whether the shift toward reduced reliance on adult child caregivers persists, as well as potential implications for care quality.
Conclusion
The results of this study affirm the persisting and substantial role assumed by family caregivers in supporting the health and well-being of older adults in community and residential care facility settings. We found that the numbers of family caregivers of older adults increased by six million during the eleven-year observation period. Stability in older adults’ care network size and the care experiences of the rising numbers of family caregivers assisting older adults without dementia is reassuring, but the issue warrants continued policy attention. The increasing pressures on family caregivers assisting older adults with dementia are especially concerning, with ramifications for the feasibility, costs, and urgency of policy intervention. Taken together, results from this study reinforce the importance of policy attention, particularly for high-risk subgroups. Our study also highlights the value and necessity of longitudinal population-based surveillance to improve our understanding of members of the care workforce, and policy and programmatic efforts to better support them.
Acknowledgments
This study was supported by the National Institute on Aging, National Institutes of Health (Grant Nos. U01AG032947 and R01AG062477). The funder had no role in the design and conduct of this analysis, including the analysis and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. To access the authors’ disclosures, click on the Details tab of the article online.
Contributor Information
Jennifer L. Wolff, Johns Hopkins University, Baltimore, Maryland.
Jennifer C. Cornman, Jennifer C. Cornman Consulting, Columbus, Ohio.
Vicki A. Freedman, University of Michigan, Ann Arbor, Michigan.
Notes
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