The economic burden of dementia care is already enormous, and will only rise further as the population ages. In \”Improving Long-Term Care Dementia: A Policy Blueprint,\” a report for the Rand Corporation, Regina A. Shih, Thomas W. Concannon, Jodi L. Liu, and Esther M. Friedman consider what might be done to improve care. Let\’s start with a bit of background (footnotes omitted):
Dementia is a debilitating and progressive condition that affects memory and cognitive functioning, results in behavioral and psychiatric disorders, and leads to decline in the ability to engage in activities of daily living and self-care. In 2010, 14.7 percent of persons older than age 70 in the United States had dementia. With the expected doubling of the number of Americans age 65 or older from 40 million in 2010 to more than 88 million in 2050, the annual number of new dementia cases is also expected to double by 2050, barring any significant medical breakthroughs. Alzheimer’s disease, which accounts for 60 to 80 percent of dementia cases, is the sixth leading cause of death in the United States overall and the fifth leading cause of death for those age 65 and older. Additionally, recent research suggests that deaths attributable to Alzheimer’s disease might be underreported such that it could be the third leading cause of death overall. It is the only cause of death among the top ten in the United States without a way to prevent it, cure it, or even slow its progression.
Dementia is already the medical condition that imposes the highest annual cost in terms of market cost of services provided, ahead of cancer and heart disease. These market costs don\’t include the costs of care provided by family and friends, which in the case of dementia could double the total costs.
The data in the report suggests that there is going to be a substantial shift in dementia care over the next few decades. The number of people with dementia is going to rise more than the number of potential family caregivers. Thus, it seems likely to me that as a society we are going to shift toward paid caregivers for dementia.
Most of the burden of caring for people with dementia is shouldered by family and friends. More than 15 million Americans currently provide family care to relatives or friends with dementia. These family caregivers typically shoulder a heavy burden: Nearly 40 percent reported quitting jobs or reducing work hours to care for a family member with dementia. Many of these caregivers also experience negative physical and mental health effects. …
With respect to formal care, about 70–80 percent of those who provide LTSS [long-term services and supports] are direct care workers, including nursing aides, home health aides, and home- or personal-care aides. This workforce benefits substantially from training in how to manage behavioral symptoms related to dementia. Inadequate training for dementia in the direct care workforce has been identified as a main contributor to poor quality of care, abuse, and neglect in nursing homes. Another significant gap in the LTSS workforce stems from the growing imbalance between the demand for—and supply of—qualified paid workers. This shortage results from high turnover and difficulty attracting qualified workers. Shortfalls in this workforce are often filled via the “gray market,” meaning that untrained, low-cost caregivers are hired, leaving older adults vulnerable to poor or unregulated quality of care. … As one indicator of the greater need for formal care among persons with dementia, 48.5 percent of nursing home residents and 30.1 percent of home health patients in 2012 had dementia. … The Alzheimer’s Association has estimated that the average per-person Medicaid spending for Medicare beneficiaries age 65 and older with dementia is 19 times higher than the average per-person Medicaid spending for comparable Medicare beneficiaries without dementia. …
Demographic trends suggest that the current heavy reliance on family caregiving is unsustainable. As the median age of the U.S. population, including baby boomers, trends upward, there will be a growing imbalance between the number of people needing care and family caregivers available to deliver it. To illustrate, the AARP Public Policy Institute estimates that the ratio of caregivers aged 45–64 to each person aged 80 and older who needs LTSS will decline from 7:1 in 2010 to less than 3:1 in 2050. … In addition, life expectancies have increased so that it is possible for two generations within one family to be living with dementia at the same time.
The report has lots of worthy and sensible recommendations focused on improving the quality of care for dementia: more outreach and education for the public and caregivers on recognizing symptoms of dementia; access to training and perhaps also some financial support for informal caregivers; better training, pay and coordination for formal caregivers; expanding home and community-based services where possible, and coordinating these with each other and with institutional care as needed; and more research into possibilities for prevention and treatment.
But this report ducks the hard question of costs. The report has some short comments about encouraging more long-term care insurance, whether through linkages to current health insurance, or through public/private partnerships of some kind, or through a national single-payer system. But the hard fact here is that the costs of dementia care–again, which is already the single most expensive medical condition–are going to grow very rapidly in the next few decades. Many elderly persons and going to face crushing financial costs, and their families are going to face costs of both money and time. I suspect that the demands for government financial and regulatory interventions in the area of long-term care for those with dementia are going to become very powerful. It\’s high time to start thinking about what policy options make more sense that others.