Alzheimer’s Patients & Family Study Revealing

New report on Alzheimer's and cost to caregivers.

2.3 Million Americans are “Long-Distance Caregivers” for people with Alzheimer’s and the costs for Long-Distance Caregivers are Almost Twice as High

According to the Alzheimer's Association 2013 Alzheimer's Disease Facts & Figures report released yesterday, 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.

Nebraska and Iowa is home to more than 106.000 people living with Alzheimer’s disease. With deaths from this disease continuing to rise, it is clear that urgent, meaningful action is necessary,” said Clayton Freeman, Program Director “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. 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.

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 Nebraska and Iowa, that translates to 215,000 caregivers providing 246 million hours of unpaid care that is valued at over $3.000.000. 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 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 % to $1.2 trillion.

2013 Health and Long-Term Care Services Breakdown
Medicare $107 billion 53%
Medicaid $35 billion 17%
Out-of-Pocket Costs $34 billion 17%
Other Sources
(HMO, Private Insurance,
Managed Care Organizations and Uncompensated Care) $27 billion 13%
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
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% 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.”


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