PRB

Dementia, which includes Alzheimer’s disease and other related disorders, is a chronic condition affecting memory, thinking, and social abilities severely enough to impair daily life. Over time, dementia limits a person’s ability to function independently. Not only does dementia take an emotional toll, caring for a person living with dementia is more expensive and time-consuming for families than other conditions common at older ages.

Here we summarize the latest demographic research on U.S. dementia trends supported by the National Institute on Aging. We distill key findings to help policymakers and public health professionals plan for an aging population based in part on the following:

• “The Demography of Dementia and Dementia Caregiving” (report).
• An Improved State of Aging in America (article).
• “Dementia Trends: Implications for an Aging America” (report).
• U.S. Aging and Dementia Trends (infographic).
• Family Caregiving for People With Dementia (infographic).

NUMBERS

The Proportion of Older People With Dementia Shrinks as Total Numbers Increase

The proportion of adults ages 70 and older with dementia declined from 13% in 2011 to 10% in 2019.¹

The share of older people with dementia is decreasing 1% to 2.5% per year, depending on the time frame and age group examined.²

But as the large baby boomer population ages, the total number of people with dementia will rise. Estimates vary, but experts report more than 7 million people ages 65 or older had dementia in 2020. If current demographic and health trends continue, more than 9 million Americans could have dementia by 2030 and nearly 12 million by 2040.³

EDUCATION

More Schooling Reduces Adults’ Dementia Risk

Older adults with more education are less likely to develop dementia; they spend a larger portion of their lives cognitively healthy and fewer years with dementia.⁴

In 2019, 5% of older college graduates (ages 70 and older) were living with dementia, compared with 18% of their counterparts with less than 12 years of education.⁵

RISK

Women, People Ages 85 and Older, and Racial and Ethnic Minorities Face Greater Dementia Risk

Dementia is more prevalent at older ages. About 3% of adults ages 70 to 74 had dementia in 2019, compared with 22% of adults ages 85 to 89 and 33% of adults ages 90 and older.⁶

Women are slightly more likely to have dementia than men. Among adults ages 70 and older, 11% of women and 8% of men had dementia in 2019.⁷

Non-Hispanic white adults are less likely to develop dementia than most other racial and ethnic groups. Among those ages 70 and older, an estimated 8.5% of non-Hispanic white adults were living with dementia in 2019, compared with 16.1% of non-Hispanic Black adults and 16.4% of Hispanic adults.⁸

As they age, married older people may have a lower risk of dementia than their unmarried counterparts.⁹

LIVING ARRANGEMENTS

Most People With Dementia Do Not Live in Nursing Homes

One estimate suggests that more than four times as many people with dementia live in traditional community settings than in nursing homes and residential care (such as assisted living or personal care homes).¹⁰

However, more than half of nursing home residents have dementia. Among those ages 70 and older living in nursing homes in 2019, 70% had dementia, according to one recent study.¹¹

Where people who have dementia live and how they receive care depends partly on their ability to pay.¹²

• People with higher incomes who have dementia are somewhat more likely to live in residential care, which cost $49,000 (median) per year in 2019 and is not covered by Medicare.
• People with lower incomes who have dementia are more likely to live at home in the community or in nursing homes. Depending on the state, Medicaid (for those who qualify) may pay a portion of nursing home expenses, which cost $90,000 (median) per year in 2019.

FAMILY CAREGIVING

Unpaid Family Members Provide the Most Care for People With Dementia

Older adults with dementia represent only about 10% of people ages 65 and older living in residential care and traditional community settings, yet they receive a disproportionate share of all unpaid care hours (41%), and their informal caregivers make up one-third of all caregivers.¹³ Overall, daughters provide the largest share of unpaid care hours for people with dementia (39%), followed by spouses (25%), sons (17%), and other family and friends (20%).

Adults ages 70 and older with dementia received more than twice as many hours of monthly care on average than adults without dementia: 171 hours versus 66 hours.¹⁴

People with dementia who are women, Black, have low income, or have low levels of education are all less likely than their counterparts to have a spouse available to provide care, but more likely to have adult children caregivers.¹⁵

When adult children are available to provide care, a person with dementia is more likely to continue to live at home rather than move to a nursing home. One nationally representative study shows that nearly one-third of adults with dementia who had no adult children and were living in the community when they were interviewed were receiving nursing home care two years later, as were one-quarter of those without an adult child living within 10 miles of them.¹⁶ By comparison, 11% of those who had an adult child living with them had moved to a nursing home two years later.

When older adults with dementia move into assisted living or other residential care settings, family caregiving does not end: 80% of people with dementia living in residential care had at least one unpaid caregiver assisting with their personal care or household activities.¹⁷

Older adults with dementia have larger caregiving networks than those without dementia and are twice as likely to have multiple caregivers sharing tasks.¹⁸

COSTS

Families Bear Most of the Monetary Costs of Dementia

In the last five years of life, average out-of-pocket costs for older people with dementia are more than 80% higher than for older people without dementia (about $62,000 versus $34,000). Medicare covers the drugs and surgeries used to treat common conditions such as heart disease and cancer, but does not cover the cost of supervision and help with eating, dressing, and other daily activities, which are primarily what people with dementia need.¹⁹

When researchers accounted for the value of unpaid family care, they estimated that the cost of care in the last five years of life for someone with dementia averaged about $287,000, significantly higher than the care costs for someone who died of heart disease (about $175,000) or cancer (about $173,000). Not only were care costs higher for people with dementia, but a larger share of those costs were not covered.²⁰

Families also spent a larger share of their assets on dementia care than on care for other conditions, 32% versus 11% of family assets, respectively, in the last five years of life. Most of this spending is on long-term care costs either in facilities or at home. African American families, people with less than a high school education, and unmarried or widowed women experienced the greatest economic burden.

When analysts put a monetary value on unpaid caregiving, the economic costs of dementia in the United States totaled an estimated $305 billion for 2020 and are projected to increase to $1.5 trillion by 2050.²¹

The combined costs of nursing home care, paid home care, and the value of unpaid care make up most of dementia care costs (between 75% to 84%).²²

LOOKING AHEAD

Obesity, Diabetes, COVID, Rapid Population Aging Pose New Challenges

The recent decline in the share of older adults with dementia in the United States is good news for families and health care providers. However, researchers question whether dementia prevalence can continue to decline in tandem with higher rates of obesity and diabetes, which are both cardiovascular risk factors for certain types of dementia.

Researchers are also investigating potential links between dementia and the novel coronavirus that causes COVID-19. One study found that people with dementia had a higher risk of getting COVID-19 and experienced more severe symptoms compared with those without dementia.²³ However, more research is needed to understand how COVID-19 affects people with dementia and might contribute to dementia risk.

Regardless of future trends in dementia prevalence, rapid population aging in the United States will contribute to an increase in the number of people living with dementia in the coming decades. Policymakers can prepare for this increase by making paid care more affordable and implementing policies that support the emerging roles of siblings, friends, cohabiting partners, and more distant relatives as caregivers.

Crucial to the overall health of the U.S. older population are policies that address growing disparities in dementia risk by ensuring that people of every race/ethnicity, and education and income level have equitable access to the resources and environments that contribute to healthy cognitive function.