PRB

Today, an estimated 7.2 million Americans ages 65 and older live with dementia. While conversations around dementia often evoke nursing homes, most older Americans living with dementia are actually aging in place in their homes. Home-based care has become more common over the last decade, partly because it is more affordable and aligns with what many people prefer.  

People living with dementia often face both medical and practical barriers to obtaining care, including challenges with memory, decision-making, and mobility. These difficulties make access to effective care at home not just helpful but essential to supporting their ability to remain safely in the community. 

Despite its benefits, home-based care is not without challenges, including the financial burden of paying out-of-pocket for services not covered by Medicare and Medicaid and the emotional toll on family members who often take on day-to-day caregiving responsibilities. Understanding how home-based care works for the growing population of older adults with dementia is critical for improving how dementia is managed in the community and providing better support for older adults and their families. 

Home-based care typically falls into two categories: home health care and home care. Home health care refers to medical services provided by licensed professionals, including skilled nursing care, physical therapy, and medical social services. It is covered by Medicare if prescribed by a doctor or nurse practitioner. Home care refers to non-medical services to assist with housekeeping and the activities of daily living, such as bathing and dressing. Medicare does not cover home care unless it is provided with medical care, but Medicaid covers home care in some states.  

Older Adults With Dementia Are Twice as Likely to Use Home Health Care 

Based on data from the Health and Retirement Study (HRS) and Medicare claims between 2012 and 2018, Julia Burgdorf and her colleagues found that approximately 30% of home health care users had a dementia diagnosis.¹ Older adults with dementia were twice as likely to use home health care compared to those without dementia.  

About half of those with dementia were referred to home health care without a preceding hospitalization, compared to slightly less than a third of those without dementia. This finding highlights the importance of home health care as a key source of clinical care for older adults with dementia, not just for recovery care, Burgdorf and her colleagues said. 

Once enrolled in home health care, people with dementia received care more times (an average of 1.4 times compared to 1 time) and for longer periods (median of 56 versus 40 days) than people without dementia. They were also more likely to receive personal care, medical social work, and speech-language pathology services than those without dementia.  

However, among people who received services, those with dementia had fewer visits for skilled nursing and physical therapy, the researchers found. 

“Existing prospective payment structures incentivize HHC providers to limit the number of visits in order to lower costs and maximize profits,” they wrote. And “the 2020 implementation of a new Medicare HHC payment model, the Patient-Driven Groupings Model (PDGM), may further incentivize limiting visits for people living with dementia.” 

The new payment model aims to reimburse providers based on how sick patients are—but it doesn’t directly account for dementia status, Burgdorf and team note. It also reduces reimbursement for community referrals, though many people with dementia enter care this way. Differences in coverage between Medicare Advantage (private plans) and fee-for-service (the traditional government-run plan), along with workforce shortages and fragmented care systems, may create additional barriers for people with dementia, they explain. 

Burgdorf and colleagues suggest several ways to improve home health care for people with dementia, including: 

• Developing care models tailored to patients’ specific needs. 
• Improving information sharing, especially during the transition from hospital to home, such as identifying a patient’s dementia status in referral documents.  
• Including family caregivers in care planning.  
• Developing better methods to assess and assist caregivers, including providing additional resources and training.  
• Developing new care approaches that bring in services like social work and speech-language pathology earlier in the care process to improve both quality of care for patients and support for caregivers.

Home Care Costs Create Heavy Financial Burden for People With Dementia

Many older adults end up paying for home care out of pocket because long-term care is not included in Medicare, Medicaid coverage is inconsistent across states, and few people have private long-term care insurance, according to another analysis.  

“The financial burden of out-of-pocket payment for home care is significant, particularly among people with dementia and those with limited income and wealth,” conclude Karen Shen and colleagues, who used Health and Retirement Study (HRS) data (2002-2018) to measure the financial burden of home care.  

Home care also often results in ongoing expenses over a long period of time, unlike most other health care costs, they found. 

In recent years, people with dementia made up one-third of an estimated 3 million people who received home care and almost half (45%) of the over 600,000 people who paid for at least some of this care out of pocket, according to the researchers.² Among those with dementia who paid out-of-pocket, half (51%) spent over $1,000 per month, compared to one-fourth (26%) of those without dementia. Additionally, people with dementia were much more likely to pay for full-time help, defined as 40 hours or more per week, compared to those without dementia (46% versus 22%). 

Although higher-income individuals are more likely to pay out-of-pocket, many people with lower incomes also do so, largely because those with fewer financial resources are disproportionately affected by disability and dementia, the authors note. In fact, about half of those paying for home care out of pocket were poor or near-poor, defying the common perception that private home care is used only by individuals with higher incomes. 

Those who are poor and have dementia experienced disproportionate financial burdens, as they spent 87% of their household income on home care, compared to 32% spent by their peers without dementia, and 22% spent by high-income individuals with dementia (See figure). 

These findings suggest that those with dementia and limited financial resources may not be getting the care they need. 

“Policies aimed at easing the financial burden of home care are essential, particularly for low-income individuals with dementia who experience the greatest financial burden,” argue Shen and her colleagues. 

They recommend policies to reduce unmet care needs and financial hardship while also making the system more equitable and responsive to the realities of aging at home with dementia, including: 

• Expanding access to Medicaid home- and community-based services to help more individuals receive support, as many states currently impose strict eligibility rules, asset limits, and waitlists that limit access.  
• Encouraging long-term care savings and expanding the availability of long-term care insurance to help people avoid steep out-of-pocket costs later in life.  
• Adding a home care benefit to Medicare, which currently does not cover non-medical home care—though such a move would be expensive and require careful implementation.  

To make these programs financially sustainable, they recommend targeting benefits to the most vulnerable individuals and incorporating cost-sharing mechanisms so that those with more resources help shoulder the cost of care. 

Figure: The Poorest Americans With Dementia Spent 87% of Their Monthly Household Income on Home Care

Percent of monthly household income spent on home care for older adults, by patient’s dementia status and income level, 2002–2018 

Note: “Poor”: 100% of the Federal Poverty Level (FPL); “Near-poor”: 100-200% of FPL; “Moderate-income”: 200-400% of FPL; and “Upper-income”: >400% of FPL.

Source: Karen Shen et al., “Paying for Home Care Out-of-Pocket Is Common and Costly Across the Income Spectrum Among Older Adults,” Health Affairs Scholar 3, no. 1 (2025). 

Caregivers Are Underusing Respite Care—Which Could Shoulder Some of the Burden 

Even with paid home care, most dementia care still falls on family and friends. In the United States, over 11 million unpaid caregivers provide over 15 billion hours of dementia care every year, according to Yeunkyung Kim and his colleagues.³ One way to give caregivers a break is through respite care—short-term care that lets family members step away for a few hours or days. Ultimately, respite care aims to help sustain caregiver health and delay the institutionalization of the people in their care.  

Yet its use remains limited. Only 16% of Black caregivers used respite services compared to 32% of white caregivers in 2015, representing a significant gap of 12 percentage points, Kim and team found. Although this racial gap had been reduced or eliminated by 2017, respite care use remained low among both Black and white caregivers. Data are from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) from 2015, 2017, and 2021. 

Even though there have been efforts to expand access, too many caregivers are still doing this difficult work without enough support. This highlights the persistence of structural and informational barriers to care—including financial cost, lack of awareness, cultural expectations, and insufficient supply of respite providers.  

The underuse of respite care represents a missed opportunity to support the mental and physical health of caregivers, and thereby also the stability of dementia care at home. 

Kim and colleagues recommend several strategies to improve access to respite care for families supporting older adults with dementia, including integrating respite services more fully into long-term care systems, particularly through expanded support in Medicaid-funded programs like home- and community-based services waivers.  

Better outreach and clearer communication could also raise awareness of available services, since many caregivers remain uninformed or face fragmented information, the researchers note. There is a clear need for more flexible respite options that can accommodate the diverse cultural, financial, and scheduling needs of caregivers. For example, offering evening or weekend respite hours for those who work during the day, or providing in-home options for caregivers who are uncomfortable with facility-based care, could make a meaningful difference. 

Simplifying program design, reducing waitlists, and ensuring consistent availability are also key to increasing use of these services, they said. 

Early onset chronic disease, a growing caregiving gap, and climate change are among the major trends affecting the health and well-being of older Americans and their families, according to leading scholars from across the country.

Before a standing-room-only crowd at the 2025 meeting of the Population Association of America in Washington, D.C., experts identified seven key themes that are challenging policymakers, planners, and families as the U.S. population rapidly ages.

1. U.S. Life Expectancy Gains Have Stalled, Lagging Behind Other Higher-Income Countries 

The United States has experienced the earliest and greatest slowdown in life expectancy improvements among higher-income countries, reported Eileen Crimmins of the University of Southern California/University of California-Los Angeles Center on Biodemography and Population Health.

“We have horrible life expectancy—and it’s getting worse and worse,” she said, pointing to the diverging line for the United States in Figure 1. Though premature deaths from heart disease and stroke have declined, Americans today are unhealthy for a longer portion of their lives, coping with chronic diseases and conditions such as diabetes, hypertension, arthritis, cancer, and heart problems.

While we “have a long way to go” to improve the health of the U.S. population, Crimmins said, new research into biomarkers gathered through blood and other medical tests is offering clues into what speeds up or slows down the aging process, including stress levels, income, and social connections over a lifetime.

Figure 1: The United States Experienced the Earliest and Greatest Slowdown in Life Expectancy Improvements Among Higher-Income Countries

Trends in Life Expectancy Among 23 Higher-Income Countries, 1980-2024

Source: United Nations, World Population Prospects.

2. Americans Are Spending More of Their Later Years With Chronic Diseases Rooted in Their Early Lives

While advances in health care have succeeded in preventing many early deaths, older people are spending more time living with chronic diseases today than two decades ago, Crimmins’ forthcoming research shows. Americans spent more years after age 65 living with diabetes, cancer, heart disease, arthritis, and high blood pressure in 2018 than in 1998, she has found.

Scott Lynch of the Duke Center for Population Health and Aging agrees. Over the past century, complex chronic conditions like cardiovascular disease and cancer have replaced infectious diseases like pneumonia and tuberculosis as the leading causes of death, he noted. In addition to biomarker research, longitudinal studies that follow individuals over decades have contributed to a growing understanding that events and conditions in childhood and adolescence shape health and lifespans in adulthood and old age, he said.

Improving the health of children and young people has profound effects later in life, argued William Dow of the Center on the Economics and Demography of Aging at the University of California, Berkeley. He pointed to new research showing that people with Medicaid insurance in childhood have better health as adults. “By reducing disability and keeping people in the labor force, Medicaid is actually paying for itself,” Dow said.

3. The United States Faces a Caregiving Crisis As the Cadre of Traditional Caregivers Shrinks

Family members provide most of the care that enables older people to live safely in their own homes, said V. Joseph Hotz of the Center for Healthy Aging Behaviors and Longitudinal Investigations at the University of Chicago. Among care recipients ages 65 and older, 69% receive only informal home care from friends and relatives, whereas just 5% receive only formal paid home care  (Figure 2).

But a care gap is emerging as the baby boom generation ages. The traditional caregiver population (ages 45 to 64) is shrinking while the number of oldest-old Americans—those most likely to need care—is growing. By 2040, there are expected to be just three traditional caregivers per person ages 80 or older—down from a 6:1 ratio in 2025, according to Census Bureau projections.

But there is some good news, Hotz adds. While research finds that adult children feel less obliged to care for stepparents, new evidence suggests that an increasing share of adult children are stepping up when older parents are in need (for example, having trouble buying food). His own analysis shows that childless older people received as much help from their siblings, other relatives, and friends as their peers received from their adult children.

Figure 2: Most Older Americans Receive Only Unpaid Help From Family and Friends

Type of Care Received by Adults Ages 65+ and 85+

Source: Jonathan Gruber and Kathleen M. McGarry, “Long-term Care in the United States,” National Bureau of Economic Research, Working Paper 31881, November 2023, DOI 10.3386/w31881.

4. Older Adults’ Social Ties Are More Important to Health and Longevity Than Many Realize

Compared with their peers who have supportive families and robust social networks, socially isolated older people face a greater risk of early death, dementia, heart disease, diabetes, and a host of other conditions, explained Debra Umberson of the Center on Aging and Population Sciences at the University of Texas at Austin. “The evidence is increasingly convincing, overwhelmingly persuasive,” she said.

Inflammation, depression, hypervigilance, alcohol consumption, and the disadvantages of lower levels of education all play a role in poorer outcomes among older adults, Umberson said. Social isolation is a modifiable risk factor; the challenge is “identifying who is most at risk, why, and what can be done.”

Research suggests that “isolation begins to increase as early as adolescence and continues steadily through the life course,” she reported. Black Americans, people living in poverty, and sexual and gender minority populations tend to experience higher levels of isolation than other groups. Experiencing the death of a family member, extreme weather events (like Hurricane Katrina, which dispersed community members), pandemics (as we saw with COVID-19), incarceration, and deportation can also disrupt families and communities.

5. Medicare Advantage Plans Could Lead to Cost Savings and More Home-Based Services, But May Shift More Caregiving to Families

In 2024, more than half of Americans ages 65 and older (54%) were enrolled in the Medicare Advantage program, up from just 19% in 2007. The dramatic change from a fee-for-service model to a privately run managed care model has vast implication for aging Americans, said Dan Polsky of the Johns Hopkins’ Economics of Alzheimer’s Disease and Services (HEADS) Center. Medicare Advantage plans may offer efficiency and flexibility that can lower recipients’ costs and increase access to home-based care, which most Americans say they prefer, according to Polsky. But new findings by Lauren Nicholas suggest that unpaid family caregivers may be providing more end-of-life home care for people with dementia, essentially moving costs from the formal system of payment to unpaid family members, he reported.

At the same time, traditional Medicare is not without innovations: A new program is exploring ways to meet the health care needs of both people with dementia and their caregivers, Polsky noted.

In the pipeline are new disease-modifying pharmaceutical treatments for dementia, but they require an early diagnosis, which only a fraction of people receive. Should these treatments scale, it could cost the Medicare program tens of billion dollars a year, presenting an additional challenge to the already-strained Medicare budget. Implementing new early diagnosis techniques and providing cost-effective new treatments will present complicated hurdles for the health-care delivery system, Polsky suggested.

6. Americans Caring for Relatives With Dementia See Increasing Demands on Their Time and Constraints on Their Employment

The more than 5 million family members and friends who provide unpaid care for older adults with dementia have high—and increasing—demands on their time, reported Jennifer Wolff of the HEADS Center, based on her team’s research using nationally representative data.

On average, the time that family caregivers spent helping older adults with dementia grew by almost 50% between 2011 and 2022, going from 21 hours per week to 31 hours (Figure 3). By contrast, time spent assisting older adults without dementia fell during the same period.

Wolff and team show that more than half (52%) of dementia caregivers lived with the person they were caring for in 2022, up from 39% in 2011. And the share able to hold jobs—outside their caregiving work—dropped from 43% to 35% during the same period.

Noting that the number of individuals affected by dementia is projected to triple in the next 30 years, Wolff underscored the importance of monitoring unpaid caregivers and developing interventions to support them. Some strategies could include providing direct financial assistance and tax relief, supporting flexible work arrangements and paid family leave, and using digital tools and remote monitoring technologies to help caregivers manage care more efficiently and connect with support networks.

Figure 3: Family Caregivers Are Spending 50% More Time Caring for Older Adults With Dementia

Average Weekly Family Caregiving Hours, by the Dementia Status of Older Adults (65+), 2011 and 2022

Source: Jennifer L. Wolff, Jennifer C. Cornman, and Vicki A. Freedman, “The Number of Family Caregivers Helping Older US Adults Increased From 18 Million to 24 Million, 2011–22,” Health Affairs 44, no. 2 (2025): 189-95.

7. Extreme Weather Events and Warmer Temperatures Pose Unique Challenges for Older People

More devastating fires, storms, and hurricanes, along with greater climate variability are the “new normal,” said Elizabeth Frankenberg of the Carolina Population Center at the University of North Carolina at Chapel Hill.

People who experience these events not only face an increased risk of death and disease but also lost livelihoods, diminished assets, and poor quality of life for months, years, and even decades to come, she noted.

Older people can be uniquely vulnerable due to reduced physical mobility, cognitive decline, diminished temperature regulation, and changes in economic resources, access to safety net programs, and the availability of social and family networks. Further, their ability to cope with change may be influenced by anxiety around uncertainty, a deep attachment to where they live, and difficulty making life-changing decisions.

To effectively plan for, mitigate, and adapt to severe weather events and temperature changes, demographers should team up with engineers to better understand the level of vulnerability in specific risky locations, Frankenberg said. For example, older people with lower incomes and limited mobility may need emergency support in places with rising sea levels or that are prone to wildfires.

How Future Research Can Address Unanswered Questions About Population Aging

The experts noted several promising areas for future research that can improve the health and well-being of older adults, including:

• Advanced data collection: Expand the use of wearables, MRIs, sound files, and other innovative data collection methods to better understand social interactions and biological processes.
• Macro-level demographic analysis: Better integrate micro-level research on households and individuals with population-level questions and policy implications.
• Biological mechanisms of aging: Focus on understanding physiological dysregulation, molecular and cellular changes, and other factors that determine fast versus slow aging trajectories.
• Early-life interventions: Evaluate social and economic interventions earlier in the life course to prevent later health problems.
• Real-world care delivery for people with dementia: Study how new diagnostic technologies and treatments can be effectively integrated into primary care systems.
• Measurement harmonization: Develop better methods to harmonize measures of dementia across different surveys and data sources.
• Root causes of isolation: Better understand why people become isolated, focusing on people, place, climate, and social disruption factors.
• Caregiving workforce: Better quantify and understand the economic value of unpaid family caregiving as the care-to-support ratio declines.
• Medicare Advantage impacts: Study how the shift to private Medicare plans affects care quality and costs, especially for vulnerable populations.

The researchers emphasized that many of these priorities require sustained investment in longitudinal data collection and interdisciplinary collaboration across aging research centers.

The scholars featured above lead many of the 15 research centers on the demography and economics of aging and Alzheimer’s disease and Alzheimer’s related dementias supported by the National Institute on Aging (NIA) of the National Institutes of Health for the past 30 years.

A coordinating center based at the University of Michigan supports the dissemination of findings from the centers in partnership with PRB.

As the large Baby Boom generation enters advanced ages, more family members and other unpaid helpers are stepping in as caregivers. In just over a decade, the number of family caregivers regularly assisting older adults with daily activities at home grew by 32%, increasing from 18.2 million to 24.1 million between 2011 and 2022.¹

While the caregiving cadre has grown, who’s getting care has also changed. Older Americans receiving family care are younger, better educated, and less likely to have dementia than they were in 2011, report Jennifer L. Wolff of Johns Hopkins University, independent consultant Jennifer C. Cornman, and Vicki A. Freedman of the University of Michigan.

The increase in family caregiving partly reflects the rising share of older adults with multiple chronic conditions, such as heart disease, hypertension, stroke, and cancer. And while the share of older adults with dementia has declined, unpaid caregivers average twice as many hours each week caring for people with dementia than without dementia (about 31 hours versus 14), Wolff and team found (see Figure 1).

In addition, a new study estimates that the number of new dementia cases will double over the next 40 years as the population ages—setting the stage for more demands on dementia caregivers and more changes to the caregiving landscape.

“Understanding the changing composition and experiences of family caregiving has never been more important, but it is challenging to assess,” the researchers write. “[It] requires consistent measurement for well-characterized, generalizable samples of people who receive and provide help.”

The nationally representative National Study of Caregiving and the National Health and Aging Trends Study offer important insights. The two studies provide a snapshot of the family caregivers that help Americans ages 65+ who live in the community (i.e., at home or with a relative) or in a residential care setting other than a skilled nursing facility, such as an assisted or independent living facility, a personal care home, or a continuing care retirement community.

Family caregivers include relatives and unpaid helpers, like neighbors and friends, who assist with personal care tasks like bathing and dressing; mobility tasks like getting out of bed and getting around the house; and household activities such as laundry, food preparation, shopping, and managing money.

Dementia Caregivers See Increasing Demands on Their Time, Employment Woes

On average, the time that family caregivers spent helping older adults with dementia increased by almost 50% over the decade, rising from 21.4 hours per week in 2011 to 31.0 hours in 2022. By contrast, time spent assisting older adults without dementia fell from 15.3 hours a week in 2011 to 13.9 hours in 2022 (Figure 1).

Figure 1: Family Caregivers Are Spending 50% More Time Caring for Older Adults With Dementia

Average Weekly Family Caregiving Hours, by the Dementia Status of Older Adults (65+), 2011 and 2022

Source: Jennifer L. Wolff, Jennifer C. Cornman, and Vicki A. Freedman, “The Number of Family Caregivers Helping Older US Adults Increased From 18 Million to 24 Million, 2011–22,” Health Affairs 44, no. 2 (2025): 189-95.

People caring for older adults with dementia have high—and increasing—demands on their time. More than half (51.7%) of dementia caregivers lived with the person they were caring for in 2022, up from 39.4% in 2011, Wolff and team report. And the share able to hold jobs—outside their caregiving work—dropped from 42.5% to 34.6% during the same period.

Among caregivers with formal jobs, the share who reported challenges with their employment—including working fewer hours or being less productive—increased over the decade, regardless of whether they cared for someone for dementia.

“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,” the researchers note.

Care Recipients Are Mainly Older Women, but the Share of Men Receiving Care Is Growing

Which older Americans get family care? As in the past, they tend to be female, non-Hispanic white women who are married or widowed. But growing numbers of family care recipients are male and have some college education. More are also separated and divorced compared to 2011, reflecting national trends.

Adult Children Continue to Care for Their Parents

Who’s providing care? Family caregivers continue to be largely female and married, and most report being in good health. In 2022, adult children still made up the largest share of family caregivers for older adults, at 40.7%, but this represents a significant decline since 2011 (Figure 2).

Figure 2: The Share of Adult Children Caring for Older Relatives Has Declined

Relationship of Family Caregivers to Adults Ages 65 and Older Receiving Care, 2011 and 2022

Source: Jennifer L. Wolff, Jennifer C. Cornman, and Vicki A. Freedman, “The Number of Family Caregivers Helping Older US Adults Increased From 18 Million to 24 Million, 2011–22,” Health Affairs 44, no. 2 (2025): 189-95.

In 2022, adult children accounted for about half (49.1%) of family caregivers for older adults with dementia, compared with 38.4% of caregivers for those without dementia. Just 17.7% of family caregivers for older adults with dementia were spouses, compared with 24.5% of family caregivers for people without dementia.

A sizeable share of family caregivers (17.0%) had children under age 18 at home in 2022, and 6% to 13% viewed their care responsibilities for older adults as a source of financial, physical, or emotional difficulty.

Despite these challenges, the researchers report a decline in the use of support groups (4.1% to 2.5%) and respite services (12.9% to 9.3%) between 2011 and 2022.

Trends and Policy Implications

Many caregivers face extraordinary demands and should be the focus of support services, Wolff and colleagues say. They single out those caring for older adults with dementia or nearing the end of life, as well as caregivers “from racial and ethnic minority groups who are more likely to assist people who have extensive care needs in circumstances that involve scare economic resources.”

Family care needs are likely to rise as the number of U.S. adults ages 85 and older is  projected to triple by 2050. The researchers note that the number of family caregivers rose even as the long-term use of skilled nursing facilities among older Americans dropped and community living increased. The challenges these caregivers continue to face is “sobering,” they write, including competing time demands from work and child care while spending an average of 17 hours per week on care. In addition, about 1 in 8 family caregivers report financial, physical, or emotional difficulties related to their caregiving roles, percentages that were largely unchanged over the 11 years examined.

Policies and programs to help reduce the financial, physical, and emotional burden of caregiving exist, but do not represent a coherent strategy, the researchers say. “Local, state, and federal policies are a patchwork that is uneven in availability and largely symbolic in magnitude,” they argue. Addressing the needs of family caregivers will require a “cohesive framework in support of the care economy.”

New data released today by PRB and the Appalachian Regional Commission shows that rates of labor force participation, educational attainment, income, and poverty continue to improve in Appalachia.

The 14th annual update of The Appalachian Region: A Data Overview from the 2018-2022 American Community Survey draws from the latest American Community Survey and comparable 2022 Census Population Estimates. Known as “The Chartbook,” the report contains more than 300,000 data points comparing Appalachia’s regional, subregional, state, and county economic status with the rest of the nation.

Key improvements in the region’s economic indicators are as follows.

Increased income and lower poverty rates

• Poverty rates declined in every Appalachian subregion, state, and type of county (urban and rural). The region’s overall poverty rate (14.3 percent) decreased two percentage points between 2013-2017 and 2018-2022.
• Median family income increased 9.3 percent between 2013-2017 and 2018-2022, which was on par with national median income growth.
• All income measures increased for every subregion, state, and type of county (urban and rural)—even after adjusting for inflation.

Higher educational attainment and labor force participation

• The share of individuals ages 25 and older who held Bachelor’s degrees increased by three percentage points, with more than one in four Appalachian adults reaching or surpassing this level of educational attainment in 2022.
• Between 2013-2017 and 2018-2022, labor force participation increased in every Appalachian subregion and type of county (urban and rural).

Increased population growth in south

• Southern Appalachia’s population increased 11.8 percent between 2010 and 2022, which surpassed the nation’s population growth average by more than four percentage points.

Increase in broadband access

• The share of Appalachian households with at least one computer device rose 8.6 percentage points between 2013-2017 and 2018-2022, while the share with broadband internet access increased by 12.2 percentage points. Both increases surpassed the national average, with federal and state programs designed to narrow persistent gaps in digital resources likely contributing to improvements.

“We celebrate the progress Appalachia has made, including declined poverty rates and increased broadband access. However, we know that there is still much work to be done for our entire region to reach economic parity with the rest of the country,” said ARC Federal Co-Chair Gayle Manchin. “ARC will continue to prioritize the quality of life of Appalachia’s 26 million residents, and remains committed to continued collaboration across federal, state, and local levels to ensure our people have a bright future.”

Despite positive trends, several data points revealed vulnerabilities that emphasize the inequities in Appalachia compared to the rest of the nation:

Overall population decline

• Nearly 60 percent (252) of the region’s 423 counties saw a population decline between mid-2010 and mid-2022. Rural counties were especially susceptible—77 of the 107 rural Appalachian counties lost residents.

Poverty rates for children and families and specific counties

• Though regional poverty rates have declined overall, rates have stayed the same or increased in 76 Appalachian counties. Poverty rates are highest for Appalachians under 18 (19.2 percent) and ages 18-24 (22.1 percent).
• Though the percentage of Appalachian households receiving payments from the federal Supplemental Nutrition Assistance Program (SNAP) decreased slightly more than the national average, participation was still higher (over 13 percent) compared to all U.S. households (over 11 percent). Participation of Central Appalachian households reached more than 20 percent.
• For households with children under the age of 18, Appalachia’s SNAP participation rate (21 percent) is nearly three percentage points higher than all U.S. households.

Disability and poverty in older adults

• Appalachia’s population trends older than the nation as a whole, with individuals ages 65 and older reaching at least 19.5 percent in 292 Appalachian counties.
• Additionally, the percentage of Appalachians ages 65 and older with a disability is more than three percentage points higher than the national rate. This was also the only age group for which poverty rates increased slightly.

Despite gains in access, digital divides persist

• Even with higher-than-average increases, Appalachian households still lagged nearly four percentage points behind U.S. rates for broadband subscriptions and device ownership. In 73 Appalachian counties, households were at least 13.3 percentage points below the U.S. average for broadband subscriptions. This gap in high-speed internet connectivity impacts residents’ access to remote work, online learning, telehealth, and more.

“The data in this year’s Chartbook highlight strides being made in the Appalachian Region, with noteworthy improvements across economic, educational, and health-related measures,” said Sara Srygley, a senior research analyst at PRB. “Yet, these data also emphasize considerable variation throughout the region—particularly the persistent challenges facing rural communities.”

The data show that Appalachia’s rural areas continue to be more vulnerable than its urban areas. Appalachia’s 107 rural counties are also more uniquely challenged, compared to 841 similarly designated rural counties across the rest of the U.S. Though rural Appalachians did have higher health insurance coverage than the rest of rural America, rural Appalachian counties continue to lag behind on educational attainment, labor force participation, broadband access, household income and population growth.

The Appalachian Region: A Data Overview from the 2018-2022 American Community Survey was written by PRB and the Appalachian Regional Commission.

In addition to the written report, ARC offers companion web pages on Appalachia’s population, employment, education, income and poverty, computer and broadband access, and rural Appalachian counties compared to the rest of rural America’s counties. For more information, visit www.arc.gov/chartbook.

About the Appalachian Regional Commission

The Appalachian Regional Commission is an economic development entity of the federal government and 13 state governments focusing on 423 counties across the Appalachian Region. ARC’s mission is to innovate, partner, and invest to build community capacity and strengthen economic growth in Appalachia to help the region achieve socioeconomic parity with the nation.

(April 2002) The West Bank and Gaza are unique entities in today’s world. Parts of the two areas consist of a series of autonomous, Palestinian-governed regions. The West Bank, approximately the size of Delaware, is bordered by Israel to the west and Jordan to the east. Gaza (also called the Gaza Strip) is approximately twice the size of Washington, DC, and shares a border with Israel to the north and east and Egypt to the south.

Political History

Britain ruled the area it called Palestine after World War I under a mandate from the League of Nations. Following Britain’s withdrawal in 1948, war broke out between Palestine’s Arab majority and Jewish minority for control of the territory, the former eventually supported by troops from surrounding Arab states. Jewish forces won, and the State of Israel was created from 77 percent of Palestine. Jordan and Egypt took control of the remaining 23 percent. Jordan annexed the area under its control and called it the West Bank; Egypt maintained control over what became known as Gaza but never annexed it. Israel seized both areas during the 1967 Arab-Israeli war, and later annexed East Jerusalem while keeping the bulk of the West Bank and Gaza under occupation. Israel also drew international criticism by erecting more than 180 Jewish settlements in the areas.

As part of the peace process between Israel and the Palestine Liberation Organization (PLO), the two sides signed a series of agreements beginning in 1993 that provided for a limited withdrawal of Israeli forces from parts of the West Bank and Gaza and the establishment of an autonomous, PLO-run government in areas inhabited by Palestinians. The Palestinian Authority (PA) began functioning in 1994.

The two sides deferred negotiations over “final status issues” to a later date. Among these issues were whether the Palestinian-governed regions of the West Bank and Gaza would become an independent state and what its borders would be. The result is that the autonomous Palestinian areas remain locked in an unviable, semi-statal condition. Following the staged Israeli withdrawal, the PA exercises full civil and security control over 80 percent of Gaza. The remainder contains Jewish settlements and is still under Israeli control.

The situation in the West Bank is much more complicated. The Israeli-Palestinian agreements created three zones: Area A consists of territory under the full civil and security control of the PA; Area B is territory under the PA’s civil and partial security control, but Israeli forces exercise predominant control; and Area C remains under full Israeli control and contains the Israeli settlements. By 2000, 17 percent of the West Bank was classified as Area A, 29 percent as Area B, and 59 percent as Area C. Much of the area where the PA exercises some type of control does not form a contiguous territory, however. Gaza is separated from the West Bank, while in the West Bank, Areas A and B are themselves divided among 227 separate areas (199 of which are smaller than 2 square kilometers) that are separated from one another by Israeli-controlled Area C. All but 40,000 West Bank Palestinians live in Areas A and B.

A Young and Growing Population

The population of the West Bank and Gaza is almost completely Palestinian Arab. The bulk of these are Sunni Muslims: 92 percent of West Bankers and 99 percent of Gazans, with the rest Christians. In addition to the Palestinian population, approximately 214,000 Jewish settlers live in the West Bank and Gaza, according to the Foundation for Middle East Peace in Washington, DC [Data are from 2002.]

* Palestinian population only.
Source: US Census Bureau.

The population of the West Bank and Gaza boasts several notable features. The population growth rate is among the highest in the world: 3.4 percent in the West Bank and 4.0 percent in Gaza, according to US Census Bureau estimates. A full 45 percent of the West Bank population are children under 15 years of age, compared with 50 percent in Gaza. Palestinian-controlled Gaza is also one of the most densely populated places on earth with some 4,091 people per square kilometer. Regionally, the Palestinians exhibit high levels of literacy. Among those 15 years and older, the rate is 92 percent for males and 80 percent for females, according to the Palestinian Central Bureau of Statistics. About 825,000 Gazans (78 percent of total) and their descendants are registered refugees from the 1948 war as are 583,000 West Bankers (30 percent of total). Not all refugees reside in refugee camps: 55 percent of Gaza refugees live in 8 refugee camps while only 27 percent of West Bank refugees live in 19 camps.

Life expectancy at birth is relatively high compared with Arab countries. But the territory faces several significant health concerns relating to underdevelopment, the legacy of occupation, and ongoing political turbulence and violence. The Palestinian uprising since October 2000 itself includes a major health problem. Between October 2000 and late February 2002, more than 1,000 Palestinians were killed and over 17,000 injured in clashes with Israelis. Israeli forces have reentered parts of Areas A and B, prevented movement among many Palestinian areas, and laid siege to Palestinian towns. The escalation in tensions between the two sides has resulted in reduced access to health and medical facilities for some Palestinians.

Some economic indicators actually declined during the early years of the peace process and have recently worsened. During 1992-1996, real per capita gross domestic product for Palestinians declined by over 36 percent, because of the combined effects of falling aggregate incomes and high population growth, according to Palestinian Chambers of Commerce, Industry, and Agriculture. The poverty rate in September 2000 stood at 21 percent. During the first three months of the uprising that began in October 2000, the situation worsened as the Palestinian economy contracted by 50 percent and unemployment rose to 40 percent. The Jordan Investment Trust estimates that the economy suffered a total of US$6.8 billion in losses during the first 12 months of the uprising.

Pollution is an environmental and health risk. Of particular concern is groundwater pollution by organic and inorganic contaminants that seep into the aquifers, especially in Gaza. These include untreated sewage (only 38 percent of households are connected to sewage systems), garbage and industrial waste, and fertilizers from agricultural runoff. The West Bank and Gaza also face problems from dumps, including Israeli dumps over which Palestinians have no control.

Michael R. Fischbach is an associate professor of history at Randolph-Macon College in Ashland, Virginia, where he specializes in modern Middle Eastern history.

References

• Palestine Economic Research Institute (MAS), Economic Monitor 5 (June 1999).
• Jordan Investment Trust, Weekly Review & Analysis 1, no. 19 (November 11, 2001).
• US Census Bureau, International Data Base, accessed online at www.census.gov/ipc/www/idbnew.html, through March 20, 2002.
• Palestinian Central Bureau of Statistics (PCBS), accessed online at www.pcbs.org, on April 16, 2002.
• Palestinian Chambers of Commerce, Industry and Agriculture, accessed online at www.pal-chambers.com, on April 16, 2002.

Children and youth with special health care needs (CYSHCN) who receive family-centered care generally have better health outcomes, research shows. When health care providers engage and prioritize the needs of the family, CYSHCN enjoy better overall health; better access to coordinated, ongoing, comprehensive health care within a medical home; fewer emergency department visits; and fewer unmet health needs.

Yet in the United States, CYSHCN families from disadvantaged groups face barriers to receiving high-quality family-centered care, according to a new analysis of national survey data by Paul Morgan, now at the University at Albany, SUNY, and colleagues at Penn State University and SRI International.¹

The researchers assessed family-centered care by measuring the extent to which doctors or other health providers:

• Spent enough time with the child.
• Listened carefully.
• Showed sensitivity to the family’s values and customs.
• Provided the family with specific information they need concerning the child.
• Helped the family feel like a partner in the child’s care.

Data were from the 2016–2019 National Survey of Children’s Health (NSCH), which uses a five-question screener to identify CYSHCN.

The study focused on the quality of care received by CYSHCN families in visits to health professionals in the previous year and controlled for potentially confounding factors including children’s general health status and the severity of their impairments.

Socioeconomic Background Is Tied to the Quality of Family-Centered Care

Morgan and colleagues found that some CYSHCN families report greater barriers to receiving high-quality family-centered health care, including:

• Families without consistent health insurance coverage.
• Poor and lower-income families.
• Single-parent families.
• Families who usually receive care in a clinic or health center, emergency room, or other setting outside a doctor’s office.
• Families of children with autism spectrum disorders, anxiety, or depression.

By contrast, families of CYSHCN with asthma—the most commonly reported special health care need—were significantly more likely to receive family-centered care than families of CYSHCN without asthma.

The results did not show consistent racial/ethnic disparities across all the measures of family-centered care—a finding that surprised the researchers. However, families of Black and Hispanic CYSHCN reported that providers spent relatively less time with their children compared with families of white CYSHCN. Families of Hispanic CYSHCN also said that providers showed less sensitivity to their family’s culture and customs.

A Targeted Approach Could Help Improve Care

Evidence from the study suggests that socioeconomic factors, rather than race or ethnicity, are central drivers of disparities in family-centered care among CYSHCN in the United States. To address these disparities, policies and systems of care serving these young people and their families can adopt comprehensive, coordinated approaches to increase provider-family engagement, cultural responsiveness, and shared decision-making, the authors noted.

To help particularly vulnerable CYSHCN families, targeted actions should focus on care provided in emergency departments, community clinics/health centers, and other non-office settings, and on providers caring for children with autism spectrum disorders or internalizing disorders, the authors suggested.

This article was produced under a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The work of researchers from Penn State University was highlighted.