By Jane Marks
Paul Revere sounded the alarm and the citizens responded to collectively confront their approaching attackers. For many years, the Alzheimer’s Association, West Virginia Chapter has been sounding the alarm that the tsunami of Alzheimer’s disease is fast approaching. Currently, 5.3 million Americans have Alzheimer’s disease, and that includes more than 48,000 West Virginians. While this is a crisis for our nation, it is even more imperative that our state take notice and take action.
Age is not the only risk factor but it is the greatest risk factor for developing Alzheimer’s. At age 65, the chances of developing Alzheimer’s are one in 10, and by age 85, the odds jump to a staggering one in two. As Americans continue to live longer, prevalence of Alzheimer’s is expected to soar from the current 5.3 million Americans to as many as 16 million by 2050, making Alzheimer’s the public health crisis of the 21st century and the defining disease of the Baby Boomer Generation.
One out of every eight baby boomers is at risk of developing Alzheimer’s. According to the 2008 U.S. Census Bureau, West Virginia had the third highest median age in the nation. In addition, the percentage of West Virginia residents age 65 and older is significantly higher than the national average. Fifteen percent of West Virginians are age 65 and older while the national average is only 12 percent. Clearly, then, West Virginia’s demographics present a much more daunting threat than many other states.
Coincidentally, or providentially, this summer, the West Virginia Bureau for Public Health under the West Virginia Department of Health and Human Services published a report called “An Overview of Dementia: the Growing Crisis in West Virginia.” The issuance of this report signals our state government’s growing realization of the collision we are moving towards with this insidious disease. One striking statistic in the report is that while Alzheimer’s is the 6th leading cause of death in this country, it is the 5th leading cause of death in West Virginia. Again, West Virginia faces a greater challenge than its counterparts in confronting Alzheimer’s.
Alzheimer’s disease is a neurodegenerative disease that progressively breaks down the functions of the brain. Alzheimer’s disease results in memory loss and loss of the ability to communicate, and it eventually leads to death. Individuals with Alzheimer’s need some degree of care throughout every stage of the disease, ultimately requiring around-the-clock supervision and care.
More than 70 percent of individuals with Alzheimer’s disease live at home or are cared for by a friend or family member. As Alzheimer’s disease progresses through the brain, it creates unique and specific challenges for the individuals with Alzheimer’s and their caregivers. As the disease progresses, individuals with Alzheimer’s need assistance with most daily activities, including eating, bathing and dressing. Communication levels can vary substantially from day to day, including significant changes in personality and behavior. Individuals with the disease are prone to wandering and hoarding, and nearly all behaviors associated with the disease increase safety risks. Ultimately, individuals with Alzheimer’s disease will need 24-hour care.
In considering who will provide care to people with Alzheimer’s, we face another serious problem. Family members frequently serve as the primary caregivers of an individual with Alzheimer’s, but they often become exhausted from the burden of caring for a loved one with Alzheimer’s. In fact, a University of Pittsburgh study reported that Alzheimer’s caregivers are 63 percent more likely to die earlier than their peers who are not caregivers.
Each of us can share anecdotal stories of families facing the challenges and burdens of Alzheimer’s, but sometimes numbers speak louder than words. And more often, dollars speak even louder.
The average lifetime cost for a family caring for someone with Alzheimer’s is about $200,000. The nature of Alzheimer’s means that in many cases the only viable option is long-term care. The average cost of nursing home care in West Virginia is about $42,000 per year, which is often a financial burden families cannot afford.
It is estimated that Medicare costs for individuals aged 65 and over with Alzheimer’s or a related dementia are approximately $33,000 per year. This number is three times the average per person cost of $10,503 for a beneficiary without Alzheimer’s. The difference in Medicaid payments is even greater.
Applying this formula to our own demographics, the state cost for treating and caring for Alzheimer’s is over $1.45 billion.
According to a report based on the Lewin Model, which examines the current trajectory of Alzheimer’s, total cost of care for individuals with Alzheimer’s by all payers will soar to more than $1 trillion by 2050 with Medicare costs climbing more than 600 percent and Medicaid costs rising 400 percent.
In 2005, 79,483 Alzheimer’s and dementia caregivers in West Virginia provided 68,609,403 hours of care. The economic value of these care hours is valued at $671 million. On average, they provide 16.6 hours of care each week. Two-thirds of caregivers missed work because of caregiving responsibilities, 8 percent of working caregivers turned down promotions and 7 percent lost job benefits.
For all of these compelling reasons and many others, the Alzheimer’s Association, West Virginia Chapter is embarking on an effort to work with state leaders to develop a plan for West Virginia to confront the crisis and build a framework to meet the needs of our citizens as they face the wave of this tsunami. This initiative, Make A Plan (MAP) for Alzheimer’s in West Virginia, will bring together stakeholders and form a workgroup to collectively create a plan. The work we do in the near future is critical in addressing the need and finding appropriate solutions for the long term.
We in West Virginia pride ourselves on taking care of our own, and as we have done for so long, we will come together and we will confront the challenge. I am confident we will move forward in meeting the needs of our fellow citizens, thereby easing the burden for our children and grandchildren. We owe them no less.
