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New York is Home to 390,000 People with Alzheimer’s Disease
ALBANY, NY (March 30, 2016) — The high costs of dementia-related care are jeopardizing the financial security of care contributors – the family members and friends who care for and support those with Alzheimer’s or another dementia - according to the 2016 Alzheimer’s Disease Facts and Figures report released today. These care contributors are found to be sacrificing basic necessities, such as food, transportation and medical care. Alzheimer’s Association’s Facts and Figures shows that these care contributors were 28 percent more likely to eat less or go hungry while contributing care to someone with Alzheimer’s, and one-fifth of them sacrificed their own medical care by cutting back on doctor visits. Overall, nearly half of care contributors cut back on their own expenses to afford dementia-related care for their family member or friend.
“We have long known how caregivers’ dedication to their loved ones exhausts them physically and emotionally, and anecdotally – we’ve known how deeply their bank accounts are affected, too. Now, hard data shows the true - and often devastating - fiscal impact Alzheimer’s has on the caregiver, known as the care contributor, who gives of their own resources in addition to their time and attention,” said Jane Ginsburg, Executive Director of the Coalition of New York State Alzheimer’s Association Chapters.
Today it is estimated that 5.4 million Americans have Alzheimer’s disease – 390,000 in New York - and nearly 16 million family members and friends are caregivers providing financial, physical and emotional support. Financial depletion related to the support of someone living with Alzheimer’s can occur directly when family and friends contribute to in-home care or other health care resources. The Alzheimer’s Association Facts and Figures report found that nearly half of care contributors reduced their own expenses or tapped into savings or retirement funds to pay for needs of their loved one with the disease; 13 percent of care contributors sold personal belongings, such as a car, to help pay for costs related to dementia, and more than a quarter eat less or go hungry to make ends meet.
The financial burden of dementia is compounded for many care contributors, 11% of whom have cut back on spending for their children’s education in order to provide support. More than one-third reported having to reduce their hours at work or quit their job entirely while caring for someone with Alzheimer’s, leading to an average loss of income of around $15,000 compared to the previous year. The Coalition supports Governor Cuomo’s paid family leave policy in support of New York’s over one million Alzheimer’s caregivers.
Preparing for the Financial Impact of Alzheimer’s
Unfortunately, a significant number of care contributors today don’t have a complete understanding of the financial implications of supporting someone with Alzheimer’s. According to data from the Alzheimer's Association Facts and Figures report, about two out of three people incorrectly believe that Medicare will help them cover nursing home costs, or they are not sure whether the costs will be covered. At the current time, only three percent of adults in the U.S. carry long-term care insurance that might help them cover these costs.
Elizabeth Smith-Boivin, President of the Coalition and Executive Director of the Alzheimer’s Association, Northeastern New York noted: “advance care planning is essential to make decision-making down the road easier, less stressful– and reduce confusion and guilt among family members forced to make difficult and urgent healthcare decisions. The Alzheimer’s Association is always available to help and encourages families consider their legal, financial and healthcare plans.” Ginsburg added, “To this end, we support establishing an advance directive registry in New York State and look forward to partnering with the legislative and the Department of Health in this endeavor.”
To help care contributors financially plan for the future, the Alzheimer’s Association suggests the following:
• Consider the need for long-term medical care in retirement plans. After an Alzheimer’s diagnosis, options may become more limited.
• Conduct an inventory of your financial resources (for example, savings, insurance, retirement benefits, government assistance, VA benefits, etc.). A financial planner or elder care attorney can help with this.
• Discuss your individual and your loved ones’ wishes for long-term care and consider your preferred living arrangements looking towards the future.
• Investigate long-term care services (for example, home care, assisted living residences and nursing homes) in your area. Ask what types of insurance they accept and if they accept Medicaid. Few individuals with Alzheimer’s and other dementias have sufficient long-term care insurance or can afford to pay out-of-pocket for long-term care services for as long as they are needed.
• Call the local Area Agency on Aging to determine what community services and support programs are available (for example, respite care, homemaker services and Meals on Wheels can help alleviate financial burdens).
• Once you understand what you have for financial resources and what you can afford, make a plan with your family or a close friend for how to access care.
To increase assistance for families affected by Alzheimer’s, the Alzheimer’s Association also supports the HOPE for Alzheimer’s Act, which would provide Medicare coverage for comprehensive care planning services following an Alzheimer’s or dementia diagnosis. Individuals can ask their legislator to co-sponsor and support the HOPE for Alzheimer’s Act.
Alzheimer’s Disease By The Numbers
The 2016 Facts and Figures report provides an in-depth look at the prevalence, incidence, mortality and economic impact of Alzheimer’s disease and other dementias – all of which continue to rise at staggering rates as the American population ages.
Prevalence, Incidence and Mortality
• An estimated 5.4 million Americans have Alzheimer’s disease in 2016, including 390,000 people in New York. This includes an estimated 5.2 million people age 65 and older, and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s. Barring the development of medical breakthroughs, the number will rise to 13.8 million by 2050.
• Every 66 seconds, someone in the U.S. develops Alzheimer’s. By mid-century, someone in the U.S. will develop the disease every 33 seconds.
• Approximately 476,000 people—almost half a million—age 65 or older will develop Alzheimer’s in the U.S. in 2016.
• Two-thirds (3.3 million) of Americans over age 65 with Alzheimer’s are women.
• Alzheimer’s disease is the sixth-leading cause of death in the U.S., and the fifth-leading cause of death for those age 65 and older. In New York, 2,556 died from Alzheimer’s in 2013. From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases, such as heart disease, breast cancer and HIV, decreased.
Cost of Paid and Unpaid Care
• Alzheimer’s is the costliest disease to society. Total national cost of caring for those with Alzheimer’s and other dementias is estimated at $236 billion (excludes unpaid caregiving), of which $160 billion is the cost to Medicare and Medicaid alone.
• In 2015, the nearly 16 million family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provided an estimated 18.1 billion hours of unpaid care, a contribution to the nation valued at $221.3 billion (with care valued at $12.25 per hour).
• There are 1,021,000 Alzheimer’s caregivers in New York providing 1,163,000,000 hours of unpaid care valued at more than $14.2 billion.
• Total payments for health care, long-term care and hospice for people with Alzheimer’s and other dementias are projected to increase to more than $1 trillion in 2050 (in current dollars) from $236 billion in 2016.
• The financial toll of Alzheimer's on individuals exceeds the toll on Medicaid. Total Medicaid spending for people with Alzheimer's disease is $43 billion, while out-of-pocket spending is estimated at $46 billion, or 19 percent, of total care payments for those with Alzheimer's and other dementias.
The Alzheimer’s Association Chapters in New York are the only statewide network capable of serving all New Yorkers with the disease. Coalition Chapters include: Northeastern New York, Central New York, Western New York, Rochester and Finger Lakes, Hudson Valley, New York City and Long Island. The 7 chapters of the Coalition provide a robust menu of support and education services, including individual and family care consultations, consumer and professional education programs, a 24-hour Helpline (800-272-3900), safety services and support groups.
Full text of the Alzheimer's Association 2016 Alzheimer’s Disease Facts and Figures report can be viewed at alzheimersanddementia.com. The report will also appear in the April 2016 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 12, issue 4).
Alzheimer’s Association 2016 Alzheimer’s Disease Facts and Figures
The Alzheimer's Association 2016 Alzheimer's Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org or call 800-272-3900.
Coalition of New York State Alzheimer’s Association Chapters
The Coalition of New York State Alzheimer’s Association Chapters advocates on behalf of the 390,000 Empire State residents living with Alzheimer’s disease and the over 1 million caregivers that support them. As the recognized leader in Alzheimer's disease support and education, the Coalition is committed to creating a dementia capable and dementia friendly New York State through robust advocacy and programmatic initiatives -- ensuring that all relevant public policy contains the Association's voice to benefit people with Alzheimer's disease and other dementias, their caregivers, and families. Visit alznys.org.
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