If you have $730,000 for nursing care, you’re set
That’s the average cost for 8 years — not an unusual span for dementia patients
People with dementia — especially those with Alzheimer’s disease — often live for years after reaching the point where they need 24-hour care, leaving families in an emotional, financial and logistical quagmire.
Randy and Mary Kaump of Hamden, Conn., know this all too well. Randy’s mother, Janis, just passed her 97th birthday in her $13,000-a-month nursing home room. She was diagnosed with senile dementia about four years ago, and her care since then have totaled about $400,000, which depleted her savings and about $100,000 of the couple’s.
“You feel like you’re responsible because they raised you, so you owe it to them to take care of them,” says Randy Kaump, an obstetrician/gynecologist. “But it can be hard to deal with when we have our own kids and careers.”
Once they no longer can be trusted to handle medications or meals on their own, some outside care is needed, says Bari Lewis, of the Alzheimer’s Association. But round-the-clock care can be necessary for five to eight years. At a median annual cost of $91,250 for a private nursing home room, according to Genworth Financial’s 2015 Cost of Care Survey, that can add up to $730,000.
Medicare doesn’t pay for longterm nursing home care, and even rehab stays often are cut short, says Judy Stein, founder of the Center for Medicare Advocacy. She blames nursing homes that rush patients out and independent contractors who handle coverage decisions for Medicare.
“If you have any relatively long-term care needs, Medicare contractors regularly deny coverage,” Stein says.
It took a bout of pneumonia for Janis Kaump to get accepted into a nursing home. Even though nursing homes aren’t supposed to discriminate based on ability to pay, “the patient needs to be accepted at the facility,” Stein says.
As a practical matter, that means either being transferred from a hospital where they were admitted for at least two nights “or that you have enough money to pay for the foreseeable future.”
Those are among the many challenges the Kaump family and others face when dealing with an elderly patient with dementia. And one key to dealing with the often mind-boggling rules and costs, experts say, is planning.
Sandy Markwood, CEO of the National Association of Area Agencies on Aging, advises families to start thinking about how to get and pay for 24-hour care as soon as a loved one is diagnosed with dementia. “We’ve heard horror stories from the field from people who didn’t plan ahead,” Markwood says.
Long-term care insurance can ease the cost burden. But experts say this type of insurance often doesn’t cover what patients need. Many families turn to Medicaid.
Mary Kaump spent nearly eight months gathering the paperwork for her mother-in-law’s Medicaid application. The documents filled two large boxes; the bank costs for making check copies totaled about $200 alone.
Janis was approved about a month later. They needed it badly, Mary Kaump says, despite her in-laws saving $400,000 to care for themselves in old age and “thought it was a lot of money.”
The process could overwhelm anyone. Lewis suggests people seek advice from elder-care attorneys, who can help navigate the financial morass, sort out powerof-attorney issues and help patients write living wills. Area agencies on aging or non-profits like the Alzheimer’s Association can help, as can geriatric care managers — although many consultants charge a fee, and those who don’t often are associated with specific nursing homes.
One way to ensure Medicare coverage kicks in is to be on top of the technicality of whether a patient is admitted to the hospital or is just under observation. That distinction can make the difference between a patient getting coverage for their medical needs and physical, speech and occupational therapy at a nursing home.
“Doctors can still make a change if you haven’t been admitted,” says Stein. “The squeaky wheel often gets greased.”