Caretakers of People with Dementia Face Often-Severe Financial Problems, According to Survey

Relatives and friends of people suffering from dementia may put their retirement savings at stake or sell assets as they increasingly face hard financial decisions to keep taking care of their loved ones. Most families have to cut back on spending, and many have to cut out basic necessity items, according to a survey by the Alzheimer’s Association, which says an average of one caregiver out of five go hungry due to a lack of money.

There are 5.4 million Americans living with Alzheimer’s disease today, making this disease the most common cause of dementia. As dementia progresses, patients begin needing more help with simple, daily activities, such as getting up, getting dressed, eating, and bathing. Nearly two out of five of the more than 15 million unpaid caregivers in the U.S. have a household income below $50,000, according to an Alzheimer’s Association estimate. Caregivers are often family members like a daughter, son, or spouse.

“This was a big shocker for us,” Keith Fargo, the Alzheimer’s Association’s director of Scientific Programs and Outreach, said in a press release. He said he had no idea about the growing number of families struggling with costs. The survey showed that families were definitely not prepared for the high costs of home care and nursing home care, among others. Home health aides now charge a median $20 per hour, and a semi-private room in a standard nursing home averages $80,300 per year.

Renee Packel, of Philadelphia, shared her story of the years after her husband was diagnosed with Alzheimer’s in 1999. “We needed money,” said Packel, who is now 80.

She said they had to sell their car and their two-bedroom house in suburbia to keep up with costs and moved into a much smaller one-bedroom apartment in the city. Packel’s husband, Art, who died in 2015, was in charge of the couple’s finances when Renee noticed money kept was missing and they were falling behind on their bills. Packel refused to let her children support them, so she got a job as a receptionist at a title company to help with expenses, and is still working there today.

As the disease kept worsened and Art began falling frequently and getting more aggressive, she moved him to a nursing home, where he lived for four years. But Renee feels lucky that her husband’s status as a U.S. veteran granted him certain benefits, even if with government help she had to pay $800 to $900 a month for nursing home care for one year.

“It was a bad time, but it was not a dire time,” Renee said, adding that selling their old house helped her financial situation.

Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association, said most people believe Medicare covers long-term care costs, but that isn’t really true. “There is no silver bullet in planning for [Alzheimer’s]; the costs are too staggering,” she said. However, people who plan ahead are more likely to avoid financial crisis later on, Kallmyer said.

The Family Impact of Alzheimer’s Survey was based on more than 3,500 interviews from last December. Nearly 500 participants said they provided caregiving and/or any type of financial aid to someone suffering from dementia — 93 percent were family members and 7 percent were friends of the patient. On average, these caregivers spent more than $5,000 a year, mostly on food, travel expenses, and medical supplies, like diapers – and even higher expenses were reported for spouses or partners.

About 50 percent of survey participants reported some sort of cutback in spending. Twenty percent went to the doctor less frequently, 11 percent couldn’t afford to buy their own medications, and another 11 percent cut back on their children’s education expenses.