Research Report: The Unseen Pillars – A Comprehensive Analysis of Family Caregivers in Long-Term Care

Many thanks to our sponsor Esdebe who helped us prepare this research report.

Abstract

Family caregivers constitute an indispensable pillar of the long-term care system, providing profound and multifaceted support to individuals grappling with chronic illnesses, disabilities, and age-related conditions. This comprehensive research report systematically examines the intricate demographics of family caregivers, the pervasive and often overwhelming challenges they encounter, the substantial economic value of their unpaid labor, and critically evaluates existing policy initiatives designed to support them. Through an exhaustive analysis of these interdependent aspects, the report aims to furnish a holistic understanding of the complex, often arduous, role of family caregivers and to articulate the imperative systemic transformations necessary to bolster their well-being, mitigate their burdens, and enhance the overall resilience and efficacy of the broader healthcare infrastructure.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

1. Introduction

Family caregivers, frequently lauded as the ‘silent backbone’ or ‘invisible workforce’ of the healthcare ecosystem, play an absolutely pivotal and irreplaceable role in the provision of long-term care services to millions of individuals facing diverse health challenges. Their contributions, ranging from complex medical procedures to daily personal care, medication management, emotional support, and intricate care coordination, are immense and foundational to maintaining the health and dignity of care recipients within community settings. Yet, despite their profound societal and economic impact, these dedicated individuals frequently navigate a landscape fraught with significant personal, emotional, physical, and financial obstacles, often without commensurate recognition or adequate systemic support.

The escalating demand for long-term care services is driven by several convergent demographic and epidemiological trends. Globally, populations are aging at an unprecedented rate, leading to a higher prevalence of chronic diseases, age-related disabilities, and complex multimorbidity. Advances in medical science have also extended lifespans, meaning more individuals live longer with chronic conditions that require ongoing assistance. In the United States, for instance, the number of adults aged 65 and over is projected to nearly double by 2060, significantly increasing the need for long-term support and services. Historically, and continuing to this day, families have been the primary providers of this care, rooted in cultural norms, familial bonds, and often, the sheer absence of affordable and accessible formal alternatives. The informal care system, thus, acts as a critical buffer, preventing the collapse of formal healthcare systems which would otherwise be overwhelmed by the sheer volume and cost of care needs.

This report embarks on a deep exploration of the multifaceted world of family caregiving. It commences with a detailed examination of the intricate demographics of family caregivers, revealing who they are and the diverse contexts in which they provide care. Subsequently, it meticulously unpacks the specific, often hidden, challenges and profound burdens they routinely encounter. A significant portion of this analysis is dedicated to quantifying and valorizing the immense economic contribution of their unpaid labor, an often-overlooked subsidy to national healthcare expenditures. Finally, the report critically assesses the efficacy and reach of current policy initiatives designed to support family caregivers at federal, state, and employer levels, culminating in a series of robust recommendations for comprehensive policy and systemic reforms aimed at fostering a more supportive, equitable, and sustainable caregiving environment. This holistic approach seeks to underscore the undeniable imperative of recognizing, valuing, and robustly supporting family caregivers as indispensable partners in a resilient and compassionate healthcare future.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

2. Demographics of Family Caregivers

The landscape of family caregiving is vast and highly heterogeneous, encompassing individuals from all walks of life who selflessly dedicate their time and energy to support loved ones. Understanding the demographic characteristics of this population is crucial for tailoring effective support strategies and policies.

2.1 Prevalence and Composition

The scale of informal caregiving in the United States is staggering. According to the National Alliance for Caregiving (NAC) and AARP, approximately 53 million adults in the United States serve as unpaid caregivers to family members or friends with health issues or disabilities. This figure, derived from their ‘Caregiving in the U.S. 2020’ report, represents roughly 21% of the adult population, marking a significant increase from the 43.5 million caregivers reported in 2015. This upward trend underscores the growing reliance on informal care providers as the population ages and the prevalence of chronic conditions rises. [National Alliance for Caregiving & AARP, 2020a]

The composition of caregiving relationships is equally insightful. The majority of caregivers (around 82%) provide care for one other adult, often a parent, spouse, or other close relative. However, a notable proportion (approximately 15%) manage care for two adults, and a smaller, yet intensely burdened, group (3%) provides care for three or more individuals. This multi-recipient caregiving is particularly challenging, often involving complex logistical coordination and amplified stress. [caregiver.org]

The types of care recipients span a broad spectrum of needs. While older adults (aged 50 and above) are the most common recipients, accounting for around 80% of those receiving care, a significant number of caregivers also support individuals under 50 who live with chronic physical or mental conditions, developmental disabilities, or other health impairments. The care provided is often complex, involving assistance with Activities of Daily Living (ADLs) such as bathing, dressing, eating, and toileting, as well as Instrumental Activities of Daily Living (IADLs) like managing finances, preparing meals, and transportation. Many caregivers also perform advanced medical/nursing tasks, such as managing medications, administering injections, and wound care, often without formal training, as highlighted by the AARP Public Policy Institute. [AARP Public Policy Institute, 2019a]

2.2 Caregiver Characteristics

Caregivers are a diverse group, varying significantly across age, gender, socioeconomic status, employment, and racial/ethnic backgrounds. These characteristics profoundly influence their caregiving experience and the types of support they require.

2.2.1 Age and Generational Dynamics

Caregivers span all adult age groups, from young adults to those well into their senior years. The ‘sandwich generation’ – individuals typically in their 40s and 50s who are simultaneously raising children and caring for aging parents – faces unique pressures. These caregivers often juggle full-time employment, childcare responsibilities, and intensive caregiving duties, leading to elevated levels of stress and financial strain. AARP reports that roughly 1 in 4 caregivers are millennials, with 6% of caregivers being under the age of 25. Conversely, a substantial number of caregivers are themselves older adults, caring for spouses or partners. Approximately 13% of caregivers are aged 75 or older, and these ‘older caregivers’ often face their own health challenges and limited physical capacities, making their caregiving role particularly arduous. [National Alliance for Caregiving & AARP, 2020a]

2.2.2 Gender Disparities

Caregiving remains a predominantly female domain. Women constitute approximately 61% of all family caregivers, a proportion that has remained relatively stable over time. They are more likely to provide more hours of care per week, assist with more complex personal care tasks, and manage more severe conditions. This gender disparity is rooted in societal expectations, traditional gender roles, and the disproportionate share of domestic and care labor typically borne by women. Female caregivers are also more likely to experience negative health outcomes, higher rates of depression, and greater financial penalties due to caregiving responsibilities compared to their male counterparts. While the number of male caregivers has shown a slight increase in recent years, their experiences and needs may differ, highlighting the importance of gender-sensitive support programs. [National Alliance for Caregiving & AARP, 2020a]

2.2.3 Socioeconomic Status and Education

Caregiving transcends socioeconomic boundaries, but its impacts are often exacerbated for those with lower incomes or educational attainment. Caregivers with lower household incomes (e.g., less than $50,000 annually) tend to spend a larger proportion of their income on care-related expenses and are more likely to experience financial hardship due to caregiving. They may also have fewer resources to pay for external help, respite care, or professional training. Education levels can correlate with awareness of available resources and ability to navigate complex healthcare systems, with less educated caregivers potentially facing greater informational barriers. Geographic location also plays a role, with rural caregivers often having limited access to formal services, transportation, and support networks compared to urban or suburban counterparts. [AARP Public Policy Institute, 2023a]

2.2.4 Employment Status and Workplace Implications

A significant portion of family caregivers are employed, balancing their professional responsibilities with caregiving duties. According to the ‘Caregiving in the U.S. 2020’ report, 61% of caregivers are employed, with 50% working full-time and 11% working part-time. This dual role often leads to substantial challenges, including absenteeism, presenteeism (being physically present at work but mentally preoccupied with caregiving), reduced productivity, and increased stress. Many caregivers are forced to make career modifications, such as reducing work hours (23%), taking a leave of absence (14%), or even leaving the workforce entirely (13%). These career interruptions have long-term financial repercussions, affecting current income, retirement savings, and career progression. Employers are increasingly recognizing the impact of caregiving on their workforce, leading to a growing interest in caregiver-friendly workplace policies. [National Alliance for Caregiving & AARP, 2020a]

2.2.5 Racial and Ethnic Diversity

Caregiving responsibilities are distributed across all racial and ethnic groups, with notable variations in prevalence, cultural context, and access to support. Hispanic, Black, and Asian American communities, in particular, demonstrate high rates of caregiving, often embedded within strong familial and cultural traditions that emphasize filial piety and collective responsibility.

• Hispanic/Latino caregivers often provide care for more hours per week and are less likely to use formal services, often due to cultural preferences for family care, language barriers, or lower awareness of available resources. [National Alliance for Caregiving & AARP, 2020a]
• Black/African American caregivers frequently provide care for individuals with multiple chronic conditions and are more likely to care for individuals with dementia. They may also face systemic barriers to accessing quality healthcare and support services, often navigating complex and fragmented systems. [National Alliance for Caregiving & AARP, 2020a]
• Asian American caregivers often operate within strong cultural norms that dictate children caring for elderly parents, which can lead to high levels of self-reliance and reluctance to seek outside help, potentially leading to increased isolation and burden. [National Alliance for Caregiving & AARP, 2020a]

Understanding these nuanced cultural dynamics is essential for developing culturally competent and accessible caregiver support programs that resonate with diverse communities and address specific barriers to care and support.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

3. Challenges Faced by Family Caregivers

The immense dedication of family caregivers often comes at a significant personal cost. The demands of caregiving can lead to a cascade of challenges impacting their emotional, physical, financial, and social well-being, often without adequate preparation or ongoing support.

3.1 Emotional and Physical Strain

The emotional toll of caregiving is profound and widely documented. Caregivers frequently experience chronic stress, anxiety, and depression due to the relentless demands, emotional intensity, and often unpredictable nature of their role. Research consistently shows that nearly 60% of caregivers report high or very high emotional stress, with symptoms of depression affecting up to 40% of caregivers. This is significantly higher than the general population. [Centers for Disease Control and Prevention, 2024a]

• Psychological Impact: The constant vigilance, decision-making, and emotional labor can lead to ‘caregiver burnout,’ a state of physical, emotional, and mental exhaustion. This syndrome is characterized by feelings of resentment, guilt, anger, and hopelessness. Many caregivers also grapple with anticipatory grief, particularly when caring for individuals with progressive conditions like dementia, mourning losses that occur while their loved one is still alive. Social isolation is a pervasive issue, as caregiving responsibilities often limit opportunities for social engagement, hobbies, and personal time, exacerbating feelings of loneliness and detachment.

• Physical Health Deterioration: The physical demands of caregiving—including lifting, transferring, assisting with mobility, and disrupted sleep patterns—can lead to chronic physical ailments. Caregivers are at increased risk for musculoskeletal problems (back pain, strains), hypertension, cardiovascular disease, and a weakened immune system due to chronic stress. They often neglect their own health appointments, preventive care, and self-care practices, prioritizing the needs of their care recipient. This can lead to a vicious cycle where the caregiver’s declining health compromises their ability to provide care effectively, potentially necessitating formal care sooner than anticipated. [CDC, 2024a]

3.2 Financial Burdens

The financial impact on family caregivers is often underestimated but profoundly significant, frequently pushing families into financial precarity. Caregiving is not merely a time commitment but a substantial economic investment.

• Out-of-Pocket Expenses: Caregivers frequently incur significant out-of-pocket expenses related to care, averaging approximately $7,200 annually. This figure can escalate dramatically depending on the care recipient’s condition, the intensity of care required, and the availability of insurance or public assistance. These expenses include, but are not limited to, medical supplies (e.g., incontinence products, wound care materials), medications not covered by insurance, assistive devices (e.g., wheelchairs, commodes), transportation costs for medical appointments, home modifications for accessibility, and even hiring external help for specific tasks or respite. For lower-income families, these costs can consume a disproportionate share of their income, creating immense financial strain. [AARP Public Policy Institute, 2023a]

• Lost Wages and Career Impact: The need to provide care often necessitates significant adjustments to caregivers’ employment situations, leading to substantial lost wages and career stagnation. As mentioned previously, many caregivers reduce their working hours, take extended leaves of absence, or leave the workforce entirely. This translates into immediate income loss and long-term consequences for retirement savings, Social Security benefits, and career advancement opportunities. The cumulative impact of lost wages, forgone promotions, and reduced retirement contributions can amount to hundreds of thousands of dollars over a caregiving trajectory, jeopardizing the caregiver’s own financial security in their later years. A 2011 MetLife study estimated that lost wages and Social Security benefits for female caregivers alone could total $324,044 over a lifetime. [MetLife, 2011]

• Poverty Risk: For some families, particularly those already teetering on the brink of financial instability, the added expenses and income loss associated with caregiving can push them into poverty. This is especially true for single caregivers or those without other sources of income or robust savings. The economic vulnerability of caregivers is a significant public health concern, as financial stress can exacerbate mental and physical health issues.

3.3 Lack of Training and Support

A critical, yet frequently overlooked, challenge is the pervasive lack of formal training and structured support systems for family caregivers. Most caregivers assume their role out of necessity, driven by love and commitment, rather than professional preparation.

• Skill Deficits and Risks: Many caregivers perform complex medical and nursing tasks—such as administering injections, managing feeding tubes, performing wound care, and operating medical equipment—without adequate training or supervision. This lack of specialized knowledge not only increases the risk of caregiver error but also contributes to caregiver stress and can jeopardize the safety and well-being of the care recipient. Without proper techniques, caregivers also risk physical injury to themselves, particularly during transfers or mobility assistance. [Caregiver Support Network, 2024]

• Navigating Complex Systems: The healthcare and social service systems are notoriously fragmented and difficult to navigate. Caregivers often become de facto care managers, coordinating appointments with multiple specialists, managing medication schedules, advocating with insurance companies, and understanding complex medical jargon. The absence of a centralized, user-friendly system for information, referral, and guidance compounds their burden and often leads to feelings of overwhelm and frustration.

• Inadequate Respite Options: Respite care, which provides temporary relief for caregivers, is crucial for preventing burnout and sustaining caregiving efforts. However, affordable, accessible, and high-quality respite options are severely limited across the country. Many caregivers report difficulty finding suitable providers, particularly for individuals with complex needs, or struggle with the cost of such services. The lack of reliable respite often means caregivers have no opportunity for personal rest, self-care, or pursuing their own interests, leading to chronic exhaustion and isolation. [AARP Public Policy Institute, 2023b]

• Limited Access to Support Groups and Counseling: While support groups and counseling services can provide vital emotional outlets and coping strategies, many caregivers are unaware of their existence, lack the time or resources to attend, or face geographical barriers. The stigma associated with seeking mental health support can also deter caregivers from utilizing these beneficial resources. [CDC, 2024a]

These pervasive challenges collectively underscore the urgent need for a comprehensive, multi-faceted approach to support family caregivers, moving beyond fragmented initiatives to a truly integrated system that recognizes their pivotal role and proactively addresses their diverse needs.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

4. Economic Value of Unpaid Caregiving

The economic contribution of family caregivers is monumental, effectively subsidizing formal long-term care systems and preventing their collapse. Quantifying this value highlights not only the critical role of these caregivers but also the immense financial burden they absorb on behalf of society.

4.1 Valuation of Caregiving Services

Estimates of the economic value of unpaid caregiving reveal a staggering contribution that far surpasses many formal industries. The AARP Public Policy Institute’s ‘Valuing the Invaluable’ series provides robust annual estimates. In 2021, the estimated economic value of family caregivers’ unpaid contributions in the United States reached approximately $600 billion. This figure is based on an estimated 38 million caregivers providing an average of 18 hours of care per week, valued at an average hourly wage that approximates the cost of formal home health services. To put this into perspective, $600 billion significantly exceeds the combined sales of the pharmaceutical industry ($526 billion in 2020) and the total Medicaid spending on nursing home care ($113.8 billion in 2020). [AARP Public Policy Institute, 2023b]

Several methodologies are employed to arrive at these valuations:

• Replacement Cost Method: This approach estimates the value of caregiving by calculating what it would cost to hire paid professionals (e.g., home health aides, nurses) to provide the same services. This is the most common method used by organizations like AARP, providing a tangible benchmark against formal care costs.
• Opportunity Cost Method: This method quantifies the income lost by caregivers who reduce work hours or leave the workforce to provide care. While harder to calculate comprehensively due to varying individual circumstances and career trajectories, it captures the personal economic sacrifice inherent in caregiving.

It is crucial to understand that even these substantial figures are likely underestimates. They typically do not fully capture the profound intangible value of familial love, emotional support, advocacy, and the complex care coordination activities that go beyond direct personal care. Furthermore, these valuations are often based on aggregate data and may not fully reflect the intensity and complexity of care provided by individual caregivers, particularly those caring for individuals with severe conditions like advanced dementia or multiple complex needs.

4.2 Impact on the Healthcare System

The economic contributions of unpaid caregivers extend far beyond individual household savings; they profoundly influence the sustainability and functioning of the broader healthcare system. Without this informal care infrastructure, the demand for formal long-term care services would overwhelm existing institutional and community-based capacities, leading to catastrophic cost increases and widespread service shortages.

• Cost Containment and Demand Reduction: Unpaid caregivers effectively serve as a massive, unfunded workforce that delays or prevents institutionalization (e.g., nursing home placement), reduces hospital readmissions, and minimizes the need for more expensive professional healthcare interventions. By providing daily personal care, medication management, and proactive health monitoring, family caregivers often prevent acute health crises that would otherwise necessitate emergency room visits or inpatient hospital stays. This serves as an immense cost-saving mechanism for Medicare, Medicaid, and private insurers. [CDC, 2024b]

• System Vulnerability: The heavy reliance on unpaid family caregiving, while currently indispensable, also exposes the healthcare system to significant vulnerabilities. Should a substantial number of caregivers experience burnout, leave their roles, or require formal services for their own health, the system’s capacity would be severely strained. This risk is amplified by demographic shifts, as the ratio of potential caregivers to older adults is projected to decline significantly in the coming decades, creating a growing ‘care gap.’ The ‘caregiver support ratio’ – the number of people aged 45-64 for every person aged 80 and over – is projected to fall from 7:1 in 2010 to 4:1 by 2030 and 3:1 by 2050, indicating a shrinking pool of potential informal caregivers relative to the growing elderly population. [National Academies of Sciences, Engineering, and Medicine, 2016]

• Interdependency of Formal and Informal Care: While distinct, formal and informal care systems are increasingly interdependent. Effective informal care can make formal services more efficient, allowing professional providers to focus on acute or highly specialized needs. Conversely, robust formal support services, such as home health aides or respite care, can prevent caregiver burnout and enable family caregivers to sustain their efforts for longer, thereby delaying the need for more expensive institutional care. The synergy between these two systems is critical for a well-functioning long-term care continuum. Investing in caregiver support is, therefore, not merely a social justice issue but a strategic imperative for long-term healthcare system sustainability.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

5. Policy Initiatives Supporting Family Caregivers

Recognizing the vital role and immense challenges faced by family caregivers, various policy initiatives at federal, state, and employer levels have emerged to provide support. However, these efforts often remain fragmented, underfunded, and insufficient to meet the pervasive needs of the caregiving population.

5.1 Federal Programs

Federal policies aimed at supporting family caregivers generally fall under the umbrella of broader aging and disability services, with some specific programs dedicated to caregivers.

• The National Family Caregiver Support Program (NFCSP): Established under the Older Americans Act (OAA) in 2000, the NFCSP is the cornerstone of federal support for family caregivers. It provides grants to states and tribal organizations to offer five core services:

  1. Information about available services.
  2. Assistance in gaining access to services.
  3. Individual counseling, organization of support groups, and caregiver training to assist caregivers in making decisions and solving problems relating to their caregiving roles.
  4. Respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities.
  5. Supplemental services, on a limited basis, to complement the care provided by caregivers.
     While critical, the NFCSP remains significantly underfunded. Its budget was approximately $200 million in 2024, a minuscule fraction of the estimated $600 billion economic value of caregiver contributions. This limited funding means services are often thinly stretched and not accessible to all who need them, particularly in rural or underserved areas. Furthermore, awareness of the program among caregivers is often low. [Health Affairs, 2024]

• Medicaid and Medicare: While these programs primarily focus on care recipients, they indirectly offer some support for caregivers. Medicaid, through its Home and Community-Based Services (HCBS) waivers, allows states to provide services in a person’s home or community rather than in institutions. Some HCBS waivers permit states to pay family caregivers for certain personal care services, effectively formalizing a portion of informal care. However, eligibility and services vary widely by state. Medicare, on the other hand, generally does not pay family caregivers directly. Its benefits for home health care are limited to skilled nursing and therapy services, not ongoing personal care. There are ongoing discussions and pilot programs exploring how Medicare could better support caregivers, recognizing their role in preventing costly hospitalizations and nursing home admissions. [Commonwealth Fund, 2023]

• Veterans Affairs (VA) Caregiver Support Program: The VA offers some of the most comprehensive federal support for caregivers of veterans. The Program of Comprehensive Assistance for Family Caregivers (PCAFC), for example, provides eligible primary family caregivers of veterans with a monthly stipend, health insurance (if they are not already covered), mental health services, and comprehensive training and support. This program is often cited as a model for broader federal caregiver support, demonstrating the potential for significant positive impact when caregivers are directly recognized and compensated. [U.S. Department of Veterans Affairs, 2024]

• Family and Medical Leave Act (FMLA): Enacted in 1993, FMLA provides eligible employees with up to 12 weeks of unpaid, job-protected leave per year for family and medical reasons, including caring for a spouse, child, or parent with a serious health condition. While it offers job security, the unpaid nature of the leave often makes it financially unfeasible for many caregivers, particularly those in lower-income households. [U.S. Department of Labor, 2024]

5.2 State-Level Initiatives

States have emerged as innovators in caregiver support, often piloting programs that federal policies later adopt or expand upon.

• Paid Family Leave (PFL) Programs: Several states have implemented paid family leave programs, providing partial wage replacement to employees who take time off to care for a seriously ill family member. States like California (2004), New Jersey (2009), New York (2018), Rhode Island (2014), Washington (2020), and Massachusetts (2021) have established or expanded their Temporary Disability Insurance (TDI) programs or created new state-administered funds to provide this benefit. These programs significantly alleviate the financial burden of unpaid leave, allowing caregivers to take necessary time off without losing their entire income. While highly beneficial, awareness and utilization rates can vary, and benefits often do not fully replace wages, posing continued challenges for lower-income families. [National Conference of State Legislatures, 2024]

• State Tax Credits and Deductions: A growing number of states offer specific tax credits or deductions to help offset the financial burden of caregiving expenses. These can vary widely in scope, from credits for specific care-related expenses to broader deductions for family caregivers. While offering some financial relief, their impact is often limited compared to direct financial assistance or comprehensive paid leave programs.

• Medicaid Self-Direction/Consumer-Directed Care: Many states, through Medicaid waivers, allow care recipients or their designated representatives to manage their own care budgets and hire their own caregivers, including family members. This ‘self-direction’ model empowers families to make choices about their care and can provide compensation to family members for services they provide, formalizing their role and offering much-needed financial support. This approach recognizes the expertise of family caregivers and gives them greater autonomy. [Centers for Medicare & Medicaid Services, 2023]

• State-Specific Respite Programs and Resource Centers: Beyond the NFCSP, some states have dedicated funding or partnerships to expand respite care options, caregiver registries, or comprehensive resource centers that act as hubs for information, training, and support groups. These initiatives are crucial for building local caregiving infrastructures.

5.3 Employer-Based Support

Employers are increasingly recognizing that supporting caregivers is not just a matter of social responsibility but also a strategic business imperative. Caregiver-friendly policies can improve employee retention, reduce absenteeism, boost morale, and enhance productivity.

• Flexible Work Arrangements: Companies are offering more flexible schedules (flextime, compressed workweeks), telecommuting options, and part-time opportunities to help caregivers manage their responsibilities. These arrangements can significantly reduce stress and allow employees to maintain their careers while providing care. [Axios, 2024]

• Paid Caregiver Leave: Beyond FMLA, some progressive employers offer their own paid leave programs for caregiving purposes, often more generous than state-mandated PFL. This is seen as a key differentiator in attracting and retaining talent, particularly in competitive labor markets.

• Employee Assistance Programs (EAPs): Many EAPs now include resources specifically tailored for caregivers, such as counseling services, legal and financial consultations, and referrals to elder care services. Some companies partner with caregiving support platforms to offer more comprehensive guidance.

• Caregiver Resource Groups and Networks: Internally, companies are forming employee resource groups for caregivers, providing a peer-support network, shared information, and a platform to advocate for more supportive workplace policies.

Despite these positive trends, employer-based support is not uniformly available and often depends on the size and progressive nature of the company. Small and medium-sized businesses, which constitute a large portion of the employment landscape, often lack the resources to implement comprehensive caregiver support programs. Furthermore, a cultural shift within workplaces is needed to normalize caregiving responsibilities and reduce the stigma associated with discussing them openly.

5.4 Emerging Models and International Perspectives

Beyond domestic policies, observing international approaches provides valuable insights into comprehensive caregiver support systems:

• Nordic Countries (e.g., Sweden, Denmark): These nations often have universal long-term care systems that provide extensive home- and community-based services, thereby reducing the direct burden on family caregivers. They also offer direct payments to care recipients, who can then choose to hire family members as formal caregivers, integrating them into the professional care workforce with associated benefits like training and social security contributions.

• United Kingdom: The UK has a ‘Carers Act’ that places a legal duty on local authorities to assess the needs of caregivers and provide support services. While implementation varies, it signifies a legal recognition of caregivers’ rights and needs.

• Canada: Several provinces offer caregiver benefit programs, tax credits, and employment insurance benefits for those taking leave to care for critically ill family members. Some provinces also invest heavily in respite care and support groups.

These international models highlight the potential for more robust, integrated, and rights-based approaches to caregiver support, often within the framework of universal healthcare or social care systems. They underscore the importance of shifting from viewing family care as a private family matter to recognizing it as a critical public good that requires substantial public investment and infrastructure.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

6. Recommendations for Policy and Systemic Changes

Addressing the multifaceted challenges faced by family caregivers requires a cohesive, multi-pronged approach that integrates policy changes at all levels with systemic reforms across the healthcare and social service sectors. These recommendations aim to recognize, value, and empower family caregivers, transforming them from an invisible workforce into fully supported partners in the care continuum.

6.1 Enhancing Support Services

6.1.1 Expansion and Diversification of Respite Care: Respite care is universally cited as one of the most critical needs for caregivers. Policies should focus on significantly increasing funding for respite services, making them more affordable, accessible, and diverse. This includes:

• Increased Funding for NFCSP and State Programs: A substantial increase in funding for the National Family Caregiver Support Program is paramount to expand respite care availability nationwide. State-level matching funds or dedicated state appropriations can further amplify this.
• Flexible and Varied Respite Options: Beyond traditional in-home or facility-based respite, there is a need for innovative models such as adult day services, emergency respite for crises, shared caregiving models where families pool resources, and even technology-enabled respite solutions (e.g., remote monitoring that reduces immediate caregiver presence).
• Streamlined Access: Reduce bureaucratic hurdles for accessing respite care. Create centralized online portals or ‘caregiver navigators’ at the community level to help families find and arrange suitable respite options.
• Subsidies and Vouchers: Implement a system of vouchers or subsidies to make respite care financially feasible for all income levels, ensuring cost is not a barrier to accessing this vital service. [AARP Public Policy Institute, 2023b]

6.1.2 Standardized Training and Education Programs: Many caregivers lack formal training for complex medical tasks, leading to stress, errors, and potential injury.

• Nationally Recognized Curricula: Develop and implement standardized, evidence-based training curricula for family caregivers. These programs should cover practical skills (e.g., medication management, wound care, safe transfers), basic medical knowledge, care coordination, legal and financial planning, and stress management techniques.
• Accessible Delivery Formats: Offer training through diverse modalities, including in-person workshops, online modules, virtual reality simulations, and peer-to-peer mentorship programs. Programs should be available in multiple languages and culturally sensitive formats.
• Integration with Discharge Planning: Mandate that hospital and rehabilitation facilities provide comprehensive, hands-on training to family caregivers before discharge, ensuring they are prepared for home care responsibilities. [Caregiver Support Network, 2024]

6.1.3 Robust Mental Health and Emotional Support: The emotional and psychological toll on caregivers is immense and often overlooked.

• Mandated Mental Health Screenings: Integrate routine mental health screenings for caregivers within primary care settings and upon contact with aging and disability services.
• Accessible Counseling and Therapy: Expand access to affordable, specialized counseling and therapy services for caregivers, utilizing telehealth options to overcome geographical barriers.
• Peer Support Networks: Invest in the development and facilitation of peer support groups, both in-person and online, where caregivers can share experiences, coping strategies, and reduce feelings of isolation. [CDC, 2024a]

6.1.4 Public Awareness and Information Campaigns: Raise public awareness about the critical role of family caregivers and available support.

• National Campaigns: Launch national public health campaigns to educate the general public, healthcare professionals, and policymakers about the realities of caregiving.
• Centralized Information Hubs: Establish and widely publicize user-friendly, comprehensive online and offline portals that serve as single points of access for all caregiver resources, services, and legal/financial information. [CDC, 2024b]

6.2 Financial Assistance

Financial strain is a leading cause of caregiver burnout and disproportionately impacts low-income families. Policies must provide tangible economic relief and recognize the economic value of caregiving.

6.2.1 Universal Paid Family Leave: Advocate for a national, comprehensive paid family and medical leave program that offers meaningful wage replacement and job protection for caregivers across all states and employment sectors. This would significantly reduce financial hardship and allow caregivers to take necessary time off without jeopardizing their economic security. [National Conference of State Legislatures, 2024]

6.2.2 Expanded Tax Credits and Deductions: Increase the value and broaden the eligibility criteria for federal and state tax credits and deductions for caregiving expenses.

• Refundable Credits: Make existing credits, such as the Credit for Other Dependents, refundable to ensure that lower-income caregivers who may not have sufficient tax liability can still benefit.
• Broader Expense Categories: Expand the types of caregiving expenses that qualify for tax relief, including home modifications, transportation, and respite care. [AARP Public Policy Institute, 2023a]

6.2.3 Direct Payment and Compensation Models: Implement and expand programs that allow family caregivers to be directly compensated for the care they provide, acknowledging their labor as a professional service.

• Medicaid HCBS Expansion: Broaden Medicaid Home and Community-Based Services (HCBS) waivers to include more options for paying family caregivers, particularly for individuals with high needs.
• Caregiver Wages: Explore models where family caregivers can be paid a fair wage, potentially through dedicated state or federal funds, linked to training and quality oversight. This approach would formalize their role, offer financial stability, and could also provide pathways to benefits like Social Security and unemployment insurance. [Commonwealth Fund, 2023]

6.2.4 Protecting Caregivers’ Retirement Security: Address the long-term financial repercussions of caregiving on retirement savings.

• Social Security Caregiving Credits: Explore mechanisms to provide Social Security credits for periods spent out of the workforce due to caregiving, mitigating the negative impact on future retirement benefits.
• Employer-Sponsored Retirement Plans: Encourage employers to allow caregivers on leave to continue participating in and contributing to their retirement plans. [MetLife, 2011]

6.3 Policy Coordination and Integration

Fragmented policies and a lack of coordination limit the effectiveness of caregiver support. A holistic, integrated approach is essential.

6.3.1 Full Implementation of the National Strategy to Support Family Caregivers: The 2022 National Strategy to Support Family Caregivers, developed by the Administration for Community Living, represents a crucial step forward. It articulates hundreds of recommendations and actions. The imperative now is for robust, accountable, and funded implementation across all federal and nonfederal partners, with clear metrics and timelines. This requires sustained interagency collaboration and resource allocation. [Health Affairs, 2024]

6.3.2 Integrate Caregiver Support into Healthcare Delivery: Family caregivers must be recognized as essential members of the care team within formal healthcare settings.

• Universal Caregiver Assessment: Mandate that healthcare providers conduct routine assessments of caregiver needs and well-being as part of discharge planning and ongoing care management.
• Caregiver-Inclusive Care Plans: Develop individualized care plans that explicitly include the family caregiver’s role, training needs, support requirements, and respite strategies.
• Communication Protocols: Establish clear communication protocols between formal healthcare providers and family caregivers, ensuring caregivers receive timely and understandable information. [Commonwealth Fund, 2023]

6.3.3 Enhanced Data Collection and Research: Comprehensive and consistent data are vital for informed policy development and evaluation.

• National Caregiver Registry/Survey: Invest in longitudinal national surveys to track caregiver demographics, needs, health outcomes, and economic impacts over time.
• Disaggregated Data: Collect data disaggregated by race, ethnicity, socioeconomic status, and geographic location to identify disparities and tailor interventions effectively.
• Research on Interventions: Fund research into the effectiveness of various caregiver support interventions, identifying best practices and scalable solutions.

6.3.4 Strengthen Legal Protections for Caregivers:

• Anti-Discrimination Laws: Enact and enforce anti-discrimination laws that protect caregivers from workplace discrimination based on their caregiving responsibilities.
• Expanded FMLA Eligibility: Expand the Family and Medical Leave Act (FMLA) to cover more workers and relationships (e.g., domestic partners, siblings, and other chosen family members), and consider extending the duration of leave. [U.S. Department of Labor, 2024]

6.3.5 Workforce Development in Long-Term Care: Address the broader long-term care workforce shortage, which indirectly impacts family caregivers.

• Invest in Professional Care Workforce: Increase wages, provide training, and improve working conditions for direct care workers. A robust formal care workforce can alleviate some of the pressure on family caregivers and provide more accessible respite and supplemental care services.

By systematically implementing these recommendations, policymakers, healthcare systems, employers, and communities can collectively build a more robust, equitable, and sustainable ecosystem of support for family caregivers. This is not merely an act of compassion but a strategic investment in the future of long-term care and the overall well-being of society.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

7. Conclusion

Family caregivers are unequivocally the indispensable bedrock of the long-term care system, providing invaluable and extensive support to millions of individuals who navigate the complexities of chronic illness, disability, and advanced age. Their contributions are pervasive, spanning medical care, personal assistance, emotional solace, and intricate logistical coordination, effectively preventing the collapse of formal healthcare systems and enabling countless individuals to remain in their homes and communities.

However, despite their profoundly critical role, family caregivers face a relentless barrage of challenges that severely impact their emotional, physical, and financial well-being. The pervasive emotional and physical strain leads to alarmingly high rates of stress, anxiety, depression, and physical deterioration. The significant financial burdens, stemming from out-of-pocket expenses and substantial lost wages, jeopardize their economic security and long-term retirement prospects. Compounding these issues is a systemic lack of adequate training, accessible respite care, and comprehensive support networks, leaving many caregivers feeling isolated, unprepared, and overwhelmed.

The economic valuation of their unpaid labor, estimated at hundreds of billions of dollars annually, underscores not only the sheer volume of their work but also the immense societal subsidy they provide. This ‘invisible labor’ functions as a critical cost-containment mechanism for the healthcare system, yet the over-reliance on this informal workforce also renders the entire long-term care infrastructure vulnerable to the growing crisis of caregiver burnout and a diminishing caregiver supply ratio.

While existing policy initiatives at federal, state, and employer levels represent nascent steps toward acknowledging this crisis, they remain largely fragmented, underfunded, and insufficient to meet the comprehensive needs of the caregiving population. The National Family Caregiver Support Program, state-level paid family leave programs, and emerging employer-based supports offer glimpses of effective strategies, but their scale and reach are far from universal.

Recognizing and robustly supporting family caregivers through comprehensive, coordinated, and adequately funded policies and programs is no longer merely an option; it is an undeniable imperative. Such an investment will not only enhance the quality of life and mitigate the burdens for millions of selfless individuals but will also fundamentally strengthen the resilience, equity, and overall effectiveness of the entire healthcare system. Moving forward, a societal commitment to valuing, investing in, and empowering family caregivers is paramount to forging a sustainable and compassionate future for long-term care, ensuring that those who care for our most vulnerable are themselves cared for.

Many thanks to our sponsor Esdebe who helped us prepare this research report.

References

• AARP Public Policy Institute. (2019a). Home Alone: Family Caregivers Providing Complex Chronic Care. Retrieved from aarp.org
• AARP Public Policy Institute. (2023a). Spectrum of Financial Supports for Family Caregivers. Retrieved from aarp.org
• AARP Public Policy Institute. (2023b). Valuing the Invaluable 2019 Update: Charting a Path Forward. Retrieved from aarp.org
• Axios. (2024). New Data Reveals Americans Demand Caregiving Solutions. Retrieved from axios.com
• Caregiver Support Network. (2024). Empowering the Unseen Heroes: A Call to Action for America’s Family Caregivers. Retrieved from caregiversupportnetwork.org
• Centers for Disease Control and Prevention. (2024a). Supporting Caregivers to Make Alzheimer’s Our Next Public Health Success Story. Retrieved from cdc.gov
• Centers for Disease Control and Prevention. (2024b). Dementia Caregiving as a Public Health Strategy. Retrieved from cdc.gov
• Centers for Medicare & Medicaid Services. (2023). Policy Options to Support Family Caregiving for Medicare Beneficiaries at Home. Retrieved from commonwealthfund.org
• Health Affairs. (2024). The Number Of Family Caregivers Helping Older US Adults Increased From 18 Million To 24 Million, 2011–22. Retrieved from healthaffairs.org
• MetLife Mature Market Institute. (2011). The MetLife Study of Caregiving Costs to Working Caregivers: Impact on Wages, Productivity, and the Bottom Line. Retrieved from https://www.metlife.com/content/dam/microsites/mmi/publications/studies/2011/mmi-caregiving-costs-working-caregivers-impact-wages-productivity-bottom-line-study.pdf
• National Academies of Sciences, Engineering, and Medicine. (2016). Families Caring for an Aging America. The National Academies Press. Retrieved from ncbi.nlm.nih.gov
• National Alliance for Caregiving & AARP. (2020a). Caregiving in the U.S. 2020. Retrieved from caregiver.org
• National Conference of State Legislatures. (2024). Paid Family Leave Enactments. Retrieved from ncsl.org
• U.S. Department of Labor. (2024). Family and Medical Leave Act. Retrieved from dol.gov
• U.S. Department of Veterans Affairs. (2024). VA Caregiver Support Program. Retrieved from va.gov