CEDAR?RAPIDS- 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.

Melissa Pence, Executive Director for the Alzheimer’s Association East Central Iowa Chapter, believes there are many burdens this disease can have on a caregiver. “Caring for a person with Alzheimer’s disease has devastating emotional and physical effects,” Pence said. “Millions of caregivers endure personal financial sacrifices as well as their access to basic needs and health care.”

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.

“Few people are prepared for the cost of caring for someone with Alzheimer’s, which happens to be one of the costliest and most common diseases affecting seniors today,” Pence said. “There is a knowledge gap in understanding the roles of Medicare and Medicaid, leaving families to incur the unexpected expenses associated with caring for their loved one.”

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.