One in five Americans are obese. One in four has a risk of dying from cancer in their lifetime. But one in three that live beyond 65 will die with Alzheimer’s or another type of dementia. All these ailments have significant health impacts. The difference? We have solutions to treat obesity and can cure some cancers. Alzheimer’s is the only disease among the top 10 causes of death in America that cannot be prevented, cured, or even slowed.
Despite the large proportion of Americans who will suffer from or be the caregiver for a loved one with this diagnosis, very few have financially prepared for this outcome. Our communities are not equipped to compassionately support our growing elderly population with cognitive impairments. And our health system—especially Medicare and Medicaid—is not prepared to finance the large number of baby boomers who will need long-term care as a result of Alzheimer’s disease (AD).
Over two years ago, on Election Day 2012, I called on our next President to make a War on Alzheimer’s a top health care priority. I issue the same charge to today's Presidential hopefuls. In 2015, Alzheimer’s and other dementias will cost the nation $226 billion, with half of the costs borne by Medicare. Unless something is done, in 2050, Alzheimer's is projected to cost up to $1.1 trillion (in 2015 dollars), meaning one in every three Medicare dollars will be spent on people with Alzheimer's and other dementias. This is financially unsustainable.
Beyond its exorbitant costs, Alzheimer’s Disease devastates quality of life for the ill and their caregivers. Many suffering from early stage cognitive disorders feel constrained by the condition and are not confident to leave their homes and participate in their communities. This shifts responsibilities to loved ones early on, and palliative care for Alzheimer’s patients often falls to family members. The reality is most Americans—70%—will need some sort of long-term care support and palliative services in their lifetimes, but fewer than 3% have purchased long-term care insurance. Many do not realize that Medicare covers less than one month of long-term care following a hospitalization, while Medicaid will only cover the cost once a patient falls below the poverty line. This leaves a significant gap where individuals are forced to either spend down their assets to qualify for Medicaid, pay out of pocket, or rely on family members for care and support. Nursing home care averages around $83,000 per year, while a home health aide is around $30,000. Either way, AD is a major expense most Americans cannot afford.
Our challenge is threefold: we must spur innovation to slow or cure the disease; we must find ways to solve the long-term financing challenges our health care system is facing; and we must change the stigma associated with Alzheimer’s—starting at the local level.
The science underlying Alzheimer's disease has been notoriously challenging, but researchers are committed to tackling the problem with the right funding. The federal government first released the National Plan to Address Alzheimer’s in 2012, with the central goal of preventing and effectively treating Alzheimer’s disease by 2025. But if the chronic underinvestment in Alzheimer’s research persists, the 2025 goal will remain out of reach. Alzheimer’s is the most expensive disease in America. However, the National Institutes of Health (NIH) currently spend less than $600 million a year on Alzheimer’s research, which is less than 1% of what the disease is estimated to cost Medicare and Medicaid this year ($154 billion). This disproportionately low level of funding is deterring research.
We need meaningful increases in federal and private sector funding to enable innovation in the field of cognitive disorders. There is some hope we’ll see more funding down the pipeline. Congress recently signed a funding bill including the Alzheimer’s Accountability Act, which directs the scientists at NIH to tell Congress the amount of funding they need on an annual basis to reach the national 2025 goal. While this does not obligate new spending, at the very least it indicates Congressional willingness to tackle the funding shortfall.
Additionally, the House Energy and Commerce Committee recently passed the bipartisan 21st Century Cures Act, which includes substantial budget increases for the NIH (including $10 billion in extra funding over 5 years) as well as the creation of a $2 billion annual NIH innovation fund that would have certain strategic objectives. Putting Alzheimer’s clinical trial speed on the list of strategic objectives for the new innovation fund would be another step in the right direction.
Americans must begin planning for the likely reality that they or a family member will die with AD or some other form of dementia. Unfortunately, the cost of long-term care insurance is currently out of reach for many, and even when available the coverage provided typically only covers a few years of long-term care. This is a problem that should be considered in any overhaul of the tax code, because AD and the associated long-term care needed is a major driver of federal health care costs. Incentivizing private savings could reduce the burden on federal entitlements as well as free up caregivers to again participate in the economy. Some of the options to incentivize long-term care planning could be to create tax incentives for the purchase of LTC insurance, offer financial incentives for employers to offer LTC insurance to employees, create a back-end catastrophic benefit for Medicare Beneficiaries, establish a Health Savings Account (HSA) for long term care services, or bundle life insurance or annuities with LTC insurance.
Finally, we must change the way society approaches AD and other dementias. At the federal level we can redesign Medicare coverage and health care providers' reimbursement to include comprehensive care-planning services following an AD diagnosis to assess patient needs and community resources. This proposal, which is outlined in the bipartisan HOPE for Alzheimer’s Act, would provide compensation to doctors for the time they spend talking with their patients about managing an Alzheimer’s diagnosis, and provide substantive options for caregivers.
We must also take steps to create communities that support the needs of those suffering from cognitive impairments. Improving the health and well-being of our population is not just about providing access to doctors and insurance coverage, it’s about fostering healthy and happy community environments. This March, the Advisory Council on Alzheimer’s Research, Care, and Services recommended HHS initiate Pilot Programs for Dementia Friendly Communities—and replicate if effective. The goal would be to increase awareness of dementia throughout all sectors of the community (law enforcement, businesses, transportation, faith communities) and help remove stigma from Alzheimer’s disease. Minnesota has already taken initiative by passing legislation enabling 50 communities to start local efforts to better support those living with dementia and their caregivers. In Europe, Bruges, Belgium, (population 117,000) has taken steps to recreate itself as a dementia-friendly city. Shop owners there display signs with a knotted-handkerchief symbol to show that they are places where those with dementia can get extra assistance. Designated counselors provide practical advice for those with the disease and offer therapy for their caregivers. Law enforcement has taken initiative by creating a database of pertinent addresses and contact information for dementia sufferers that could expedite a search when someone goes missing. This compassionate, holistic approach to supporting AD patients and their families is worth the investment.
Preventing and treating Alzheimer’s disease must be a top health care priority. Medical innovation has changed HIV so that it is no longer a death sentence, and in the past year we’ve found a cure for Hepatitis C. Why can’t Alzheimer’s be next?
