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Long-term care must be improved to aid rising numbers with dementia, study finds

As millions of Americans struggle to help loved ones with dementia, policymakers should consider more ways to improve long-term services and supports for the soaring numbers of people with the debilitating condition and their caregivers, a new RAND Corporation study says -- and it offers possible ways to do so.

Unlike other, existing national plans or reports that focus on either long-term care or dementia, the RAND study examines where these concerns intersect, providing a national blueprint that could bolster dementia caregiving.

Earlier RAND research estimated that about 15 percent of Americans older than 70 suffer from dementia, a condition that includes Alzheimer's disease. The number of seniors with Alzheimer's disease is projected to triple by 2050, afflicting as many as 14 million in the United States.

The annual costs of dementia care, estimated by RAND researchers to be between $159 billion and $215 billion, could more than double by 2040 if the age-specific prevalence rate of the disease remains constant as the nation's population grows older. U.S. policymakers have made funding for clinical responses to dementia a priority.

"A recent study by RAND found that the majority of Americans' cost-burden for dementia is caused by long-term care," said Regina A. Shih, the study's lead author and a senior behavioral scientist at RAND, a nonprofit research organization. "As baby boomers reach the ages of highest dementia risk, the nation faces urgency in finding ways to improve long-term services and supports specifically for this condition. This issue is critical for families and loved ones who provide the bulk of dementia care."

The study outlines 25 high-impact policy options that should be considered for adoption immediately. The recommendations are organized around five objectives:

  • Increase public awareness of dementia to reduce stigma and promote earlier detection.
  • Improve access to and use of long-term services and supports for people with dementia.
  • Promote high-quality care that is focused on meeting the needs of individuals and family caregivers.
  • Provide better support for family members who provide caregiving to people with dementia.
  • Reduce the financial burden placed upon individuals and families who must pay for long-term services and support for people with dementia.

RAND researchers say meeting the objectives will require effort across multiple sectors and by numerous stakeholders, including groups that provide care or purchase care, as well as researchers and policymakers.

New legislation or changes to existing regulations may be needed to authorize some policies, such as a proposed expansion of home and community-based services. Other barriers may be operational, such logistical challenges to linking together long-term care insurance and health insurance. In some instances barriers may be political, such as expected opposition by some groups to a single-payer long-term care insurance system.

"There is no one single path that is the best one to follow to provide better care for people with dementia and improve support for their caregivers," Shih said. "But what is clearly needed is more and quicker action around a set of recommendations to respond to this large and growing problem."

RAND researchers found that one of the first steps to help individuals plan for long-term care needs is to increase detection and diagnosis of dementia through better outreach to the public and wider use of cognitive assessment tools by providers.

Researchers also highlighted the importance of promoting high quality, long-term care by centering care around individuals and family caregivers. This can be done by identifying them jointly during care, and improving coordination of care across different settings, including hospitals, emergency departments, nursing homes, home care and hospices.

Middle-class Americans, in particular, struggle with the high costs of dementia long-term care because they can't afford long-term care insurance policies and often don't qualify for government help under Medicaid, RAND researchers say. The need is great to ease the financial strain of dementia care, as neither the federal government nor the private insurance industry has developed financially sustainable and affordable long-term care coverage.

The study notes that as fewer family caregivers will be available to care for aging baby boomers because of shrinking family sizes, high-impact policy options should better support those who are paid to provide dementia care. This includes more dementia-specific information and training, as well as greater financial incentives to specialize in the field of geriatrics.

RAND's latest dementia research, which builds on earlier work, included interviews with key representatives of national, state and local stakeholder groups. Their views, combined with research on existing policy plans, were analyzed to rank possible policy options to identify those with the greatest impact on improving dementia long-term care.


Contact: Warren Robak
RAND Corporation

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