According to the Alzheimer’s Association 2013 Alzheimer’s Disease Facts & Figures report released today, one in three seniors dies with Alzheimer’s or another dementia in the United States. The new report shows that while deaths from other major diseases, such as heart disease, HIV/AIDS and stroke, continue to experience significant declines, Alzheimer’s deaths continue to rise – increasing 68 percent from 2000-2010. 

“New York is home to more than 320,000 people living with Alzheimer’s disease. With deaths from this disease continuing to rise, it is clear that urgent, meaningful action is necessary,” said Catherine James, chief executive officer for the Alzheimer’s Association, Central New York Chapter. “Our community needs to come together to fight against this disease, particularly as more and more people age into greater risk for developing a disease that today has no cure.”

Alzheimer’s disease is the sixth leading cause of death in the United States and is the only leading cause of death without a way to prevent, cure or even slow its progression. Based on 2010 data, Alzheimer’s was reported as the underlying cause of death for 83,494 individuals – individuals who died from Alzheimer’s. The Alzheimer’s Association 2013 Facts and Figures reveals that in 2013 an estimated 450,000 people in the United States will die with Alzheimer’s. The true number of deaths caused by Alzheimer’s is likely to be somewhere between the officially reported number of those dying from and those dying with Alzheimer’s.  

According to the Alzheimer’s Association 2013 Facts & Figures, a recent study evaluated the contribution of individual common diseases to death using a nationally representative sample of older adults and found that dementia was the second largest contributor to death behind heart failure. Among 70-years-olds with Alzheimer’s disease, 61 percent are expected to die within a decade. Among 70-year-olds without Alzheimer’s, only 30 percent will die within a decade.

 

Local Impact of Alzheimer’s Disease

A supplemental report published today by the Central New York Chapter shows that at least 38,403 and as many as 69,549 people have Alzheimer’s disease. The Chapter’s report bases its findings on three different mathematical formulas that utilize age -- identified by the Alzheimer’s Association as the leading risk factor for developing Alzheimer’s disease -- as the primary variable in its calculation. While the 2013 Facts & Figures prevalence data is weighted state-by-state for various demographic factors, the data published in the supplemental report is not. Instead, it applies a ratio to three age groups -- 65 to 74, 75 to 84, and 85 and older -- as counted in the 2010 U.S. Census. 

The report reveals that within the 14-county territory of the Central New York Chapter, Onondaga County has the highest number of people living with Alzheimer’s disease. As many as 18,633 people countywide live with the disease. 

 

Estimated Population with Alzheimer’s Disease in Central New York (High estimates)

14-county total: 69,549

The report also looks at issues of aging and Alzheimer caregiving in Central New York. There are at least 119,351 Alzheimer caregivers in the Central New York Chapter’s 14-county region and the care they provide is valued at more than $1.6 billion annually. The Alzheimer’s Association estimates that 3.1 people provide care to every one person with Alzheimer’s disease at a per-person average of 1,193 hours per year, or nearly 136 million hours regionwide. When multiplied by the mean caregiving wage ($11.93 according to the National Caregiving Alliance), the total value of the region’s Alzheimer caregiving was $1,621,773,829. If Alzheimer’s caregiving were a company, it would be the largest employer in the region and its economic value would be eighth in the region behind Verizon, Lockheed Martin, Time Warner Cable, Bank of New York Mellon, National Grid, Wegmans and Cornell University.

Unfortunately, the local trend is not changing. According to data from the Cornell University Program on Applied Demographics, the 14-county region represented by the Alzheimer’s Assocaition, Central New York Chapter is expected to see a 30.05 percent increase in the numbers of persons 65 years of age and older between 2000 and 2035. Five counties -- Chenango (52.22 percent), Jefferson (61.75 percent), Madison (64.53 percent), Oswego (57.34 percent) and Tompkins (60.87 percent) -- are predicted to see increases of 50 percent or more.

“The demographic picture in Central New York continues to get grayer,” James said. “We know that age is the number one risk factor for the disease, so what we must do now as a community is ask ourselves how prepared are we to deal with the Alzheimer’s crisis?”

 

Human and Financial Toll of Alzheimer’s

More than 5 million Americans are living with Alzheimer’s disease. Without the development of medical breakthroughs that prevent, slow or stop the disease, by 2050, the number of people with Alzheimer’s disease could reach 13.8 million. Previous estimates suggest that number could be high as 16 million. 

Alzheimer’s and dementia place an enormous burden on individuals and families. In 2012, there were more than 15 million caregivers who provided more than 17 billion hours of unpaid care valued at $216 billion. In New York State, that translates to 1.3 million caregivers providing 1.14 billion hours of unpaid care that is valued at nearly $14.1 billion. Individuals with dementia often require increasing levels of supervision and personal care as the disease progresses. As symptoms exacerbate as the disease progresses, the care required of family members and friends can often result in increased emotional stress and health challenges for caregivers. Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers had $9.1 billion in additional health care costs of their own in 2012. 

The burden on the nation’s health care system and government programs is also enormous. According to the Alzheimer’s Association 2013 Facts and Figures, the total payments for health and long-term care services for people with Alzheimer’s and other dementias will total $203 billion in 2013, the lion’s share of which will be borne by Medicare and Medicaid with combined costs of $142 billion. Despite these staggering figures today, by 2050 total costs will increase 500 percent to $1.2 trillion. 

 

2013 Health and Long-Term Care Services Breakdown

Total:    $203 billion    

 

“Alzheimer’s disease steals everything – steadily, relentlessly, inevitably. With baby boomers reaching the age of elevated risk, we do not have time to do what we have always done,” said Robert Egge, Vice President of Public Policy for the Alzheimer’s Association. “The National Institutes of Health needs to reset its priorities and focus its resources on the crisis at our doorstep, and Congress must fully fund implementation of the National Alzheimer’s Plan to solve the crisis.” 

 

Special Focus on the Long-Distance Caregiving Experience 

The Alzheimer’s Association 2013 Facts & Figures also explores the challenges faced by long-distance caregivers for people living with Alzheimer’s. The report finds that nearly 15 percent of caregivers for people with Alzheimer’s or another dementia are “long-distance caregivers” – caring for people with Alzheimer’s disease who live at least 1 hour away. These long-distance caregivers had annual out-of-pocket expenses nearly twice as high as local caregivers – $9,654 compared to $5,055.  

 

“The difficulties of Alzheimer’s and dementia are significant for all caregivers, but individuals who live a substantial distance from their loved ones face unique hardships,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “Long-distance caregivers have nearly double the out-of-pocket expenses of local caregivers, experience greater challenges assessing the care recipient’s conditions and needs, report more difficulty communicating with health care providers and often have higher levels of psychological distress and family discord in their caregiving experience.”