The long reach of Alzheimer's: Ensuring that policies meet needs

The aging of the U.S. population has turned the prism to focus on the increasing number of families facing the challenge of providing care for people with dementia, said Julie P.W. Bynum, associate professor at The Dartmouth Institute for Health Policy & Clinical Practice. Writing in the April issue of Health Affairs, she says the "long reach" of Alzheimer's will have an affect on broad-based national policies that must be addressed sooner rather than later.

In one important way, Alzheimer's disease is unlike the four chronic conditions that cause more deaths -- heart disease, cancer, stroke and chronic pulmonary disease, Bynum says. With Alzheimer's, there is no way to prevent or slow the disease's progression. It is estimated that cases will increase from 3 million in 2011 to more than 10 million in 2050.

The most striking implications have to do with cost. Because the majority of the cases involve people over 65, Medicare bears the brunt of the costs. And, because patients often require long-term care and outlive their assets, Medicaid ends up paying for a large part of needed nursing home care.

The annual cost of providing care for all people over the age of 70 in the U.S. is estimated at $157-$215 billion in 2010. The direct cost is estimated to be $109 billion, higher than similar costs for heart disease or cancer ($102 billion and $77 billion respectively). By 2040, spending on dementia patients is estimated to be $1.2-$1.6 trillion, if no breakthrough therapies emerge.

Additional costs are borne by informal (unpaid) caregivers, such as spouses or family members, who provide basic daily care and a safe environment. But these caregivers present their own set of policy challenges with associated loss of work productivity and declines in their own health.

Alzheimer's carries far-reaching implications for the policy community, as the impact of dementia reaches well beyond the individual patient and his or her caregivers, Bynum says.

The Policy Implications:

• Science and technology. Funding policies are critical for research to close gaps in scientific knowledge about pathophysiological cause of the disease, how to prevent it, detect it early and accurately, and how to slow it, if not cure it.

• Health care. Payment policy and regulatory functions in Medicare have direct implications for people living with dementia who are heavy users of hospital-based care.

• Long-term services and supports. Payment policy for nursing homes and strategies to support community living are fundamental for people with late disease. About 75 percent of people with dementia will spend time in a nursing home at some point in their disease. Medicaid is the primary payer for two-thirds' nursing home expenditures, which cause budgetary issues, especially for states.

• Public health. Addressing healthy lifestyle and risk factors as well as community readiness are important for a population approach to managing the growing burden of dementia.

• Housing and community services. Critically important to support for those who wish to remain in their homes, are services such as those related to the rights of the elderly, Meals on Wheels, caregiver support, adult day care and senior centers. These community services are less costly than nursing home care, but less visible to federal policy makers because they are organized on the local level.

• Labor. New policies may be required to address the challenge of ensuring a competent and adequate workforce, especially for hands-on caregivers, such as personal care assistants, home health aides, and nursing assistants.

• Justice and law enforcement. Relevant policies in the legal and law enforcement arena address issues that arise with substituted judgment and the need to provide protection from exploitation, abuse and neglect.

"Patients' complex and expensive care needs and increasing numbers of people with dementia underscore the need to pay greater attention to how society protects and provides services for this vulnerable population at a cost that is sustainable, all while continuing to pursue treatments and cures." Bynum said.