woman with dementia sitting in chair
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This year, Alzheimer’s and other dementias will cost the nation $321 billion, increasing to $1 trillion by 2050, according to a report released Tuesday by the Alzheimer’s Association.

The burden of Alzheimer’s disease and dementia not only affects the individual and their families; it also affects the direct care workforce and the nation’s healthcare system. And with more older adults joining the ranks of those living with dementia, those burdens are only growing heavier, according to the report.

More than 6 million Americans are living with Alzheimer’s disease and other dementias, the Alzheimer’s Association said. The group attributed a 17% increase in Alzheimer’s and dementia deaths in 2020 to the pandemic. 

The association’s annual report reveals the burden of Alzheimer’s and dementia on the nation. An accompanying special report examines the challenges physicians and the American public face in understanding and diagnosing mild cognitive impairment, which can signal the beginning stages of dementia. 

Direct care workforce

About 4.5 million Americans make up the direct care workforce, providing care to older adults living at home or in assisted living communities and nursing homes, according to the report. From 2016 to 2026, the demand for direct care workers is projected to grow by more than 40%, whereas their availability is expected to decline, according to the association’s facts and figures report.

Direct care workers have difficult jobs and may not receive the necessary training to provide dementia care, according to the annual report. Turnover rates are high among direct care workers — as high as 65% annually for certified nursing assistants — and recruitment and retention are persistent challenges.

Fifty-eight percent of residential care settings — including assisted living communities — offer programs for residents living with Alzheimer’s or other dementias. Average aide staff hours per resident range from two hours and 11 minutes per day in settings with less than 25% of residents in whom dementia has been diagnosed, to 2 hours 44 minutes per day in settings with more than 75% of residents in whom dementia has been diagnosed. 

Critical diagnosis

Mild cognitive impairment due to Alzheimer’s disease represents a critical turning point in the disease continuum, according to the Alzheimer’s Association. Accurate diagnosis is critical in identifying individuals who might benefit from early treatment, which also may be associated with lower overall healthcare costs as the need for “costly assisted living, nursing home and other types of residential care is postponed,” according to a special report on understanding mild cognitive impairment.

According to the report, 34% of residents in residential care settings — including assisted living communities — have Alzheimer’s or other dementias. Of those facilities, 61% are small (four to 25 beds) and have a larger proportion of residents with dementia than residential care settings with more beds — 51% in settings with four to 25 beds, compared with 44% in settings with 26 to 50 beds and 39% in settings with more than 50 beds. 

Cost of care

The overall median cost of long-term care services for all users — including home- and community-based services — in an assisted living community was $4,429 per month or $53,148 per year in 2020 — a 3.6% average annual increase between 2015 and 2020, according to the annual report.

Few individuals with Alzheimer’s or other dementias have sufficient long-term care insurance or can afford to pay out of pocket for long-term care services, the report authors wrote. Based on data from the National Health Expenditure Account, private insurance represents only 9% of long-term services and supports spending in 2019. 

In 2021, total payments for all people living with Alzheimer’s disease or other dementias were estimated at $321 billion. Medicare and Medicaid are expected to cover 64% ($206 billion) of total healthcare and long-term care payments for these individuals, with out-of-pocket spending expected to be $81 billion. Total Medicaid spending for people with Alzheimer’s and other other dementias is projected to be $60 billion this year, according to the annual report.

The total lifetime cost of care for someone with dementia is estimated at $371,621.