West Virginia caregivers provided unpaid care valued at over $1.5 billion in 2015
CHARLESTON, W.Va. – The personal financial support required by a person with Alzheimer’s disease may ultimately deprive care contributors of basic necessities, such as food, transportation and medical care, according to the 2016 Alzheimer’s Disease Facts and Figures report released today.
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.
“Caring for a loved one with Alzheimer’s is not only emotionally and physically straining,” said Bethany Hall, Executive Director of the Alzheimer’s Association, West Virginia Chapter. “When some care contributors are spending at least $80,000 a year for assisted living, which is not covered through Medicare, a financial burden is also placed on their shoulders. Researchers have found that total out-of-pocket spending for health care for people with dementia is more than three times the out-of-pocket expenses for people of the same age without dementia .”
Today it is estimated that 5.4 million Americans have Alzheimer’s disease, 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 13 percent of care contributors sold personal belongings, such as a car, to help pay for costs related to dementia, while nearly half tapped into savings or retirement funds. On average, care contributors, many of whom do not live with the person they’re caring for, spent more than $5,000 a year of their own money to care for someone with Alzheimer’s disease; however, amounts varied with many spending tens of thousands of dollars per year.
The financial burden of dementia is compounded for many care contributors, as 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. Eleven percent of care contributors have cut back on spending for their children’s education in order to provide support.
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.
To help care contributors financially plan for the future, the Alzheimer’s Association suggests the following:
- Look at retirement planning as a time to think about how to prepare for the need for long-term medical care. After an Alzheimer’s diagnosis, your options may be 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.
- 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 as 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 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 37,000 in West Virginia. 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 West Virginia, 590 deaths occurred from Alzheimer’s disease 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 108,000 Alzheimer’s caregivers in West Virginia providing 123 million hours of unpaid care valued at over $1.5 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 is here to encourage and support care contributors,” said Carolyn Canini, Family Services Director of the Alzheimer’s Association, West Virginia Chapter. “Through our 24-7 Helpline, in-person care consultations, educational workshops and support groups, care contributors can learn how best to care for their loved one and themselves. Caregivers and care contributors are not alone, we are here standing by their side.”
Full text of the Alzheimer’s Association 2016 Alzheimer’s Disease Facts and Figures report can be viewed at http://alz.org/facts/. 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). For additional information about programs and services in West Virginia, visit alz.org/wv.
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.