WASHINGTON — They go above and beyond to care for loved ones with dementia. Now, a new survey says family and friends who help those with Alzheimer’s disease and related maladies pay a high financial cost.
The Alzheimer’s Association commissioned the nationwide survey focusing on 502 “care contributors” who either provide direct care or help pay for professional services for dementia patients, such as a nursing home.
Almost half of those surveyed reported they had to cut back on the basics — such as food, transportation and even their own medical care — in order to pay expenses for their loved one.
“The care contributors make enormous personal and financial sacrifices, and they are jeopardizing their own financial security,” says Ana Nelson, vice president for programs and services with the Alzheimer’s Association National Capital Area Chapter.
About 17 percent of the children of Alzheimer’s patients surveyed said they pulled from their personal or retirement savings to pay for the care of their elderly parents, while 11 percent cut back on spending for their own kids’ education.
Nelson says “they are making sacrifices to the point that they are actually going without food or taking care of their own medical needs in order to afford dementia care.”
Low-income families seemed to be the hardest hit by far, with wage-earners cutting back on hours to provide care while at the same time being asked to pay more out of pocket for dementia-related expenses.
The survey found many families were totally unprepared for the financial burden, and many had no idea that Medicare or Medicaid would not pick up the entire tab.
“Folks have a misunderstanding of who pays for the care,” says Nelson, adding, “it’s going to be very important for families to become more proactive and really to learn about what they need to put in place.”
In the D.C. area, the local chapter of the Alzheimer’s Association acts as something of a clearinghouse for the patchwork of community services that can help patients and their families.
Nelson says the D.C. region mirrors national trends in caregiving, and families need to start planning long before a loved one is diagnosed with Alzheimer’s or a related form of dementia.
The National Capital Area Chapter has information on its website. There is also a free helpline number: 1-800-272-3900.
