By Jayne O’Donnell & Laura Ungar
October 16, 2015
People with dementia — especially those withAlzheimer'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 varied types of 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 in old age," says Randy Kaump, an obstetrician/gynecologist. "But it can be hard to deal with when we have our own kids and careers."
Baby Boomers are increasingly faced with supporting both their children and their parents, or at least helping to figure out how their parents can best help themselves. Senior citizens with heart disease and cancers that were once a death sentence are now living far longer. And as Randy Kaump notes, "Almost everyone becomes demented if they live long enough."
For some, while the brain is deteriorating, the rest of the body is often fairly healthy, says Bari Lewis, director of community outreach for the Kentucky and Southern Indiana chapter of the Alzheimer’s Association. Once they can no longer be trusted to handle their medications or meals on their own, some outside care is needed, but Lewis says 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 study, that can add up to $456,250 for five years and $730,000 for eight.
Medicare doesn’t pay for long-term nursing home care, and even short-term rehab stays are often cut short long before they should be, says Judy Stein, founder and executive director of the Center for Medicare Advocacy. She blames both nursing homes that rush patients out — saying they aren't progressing with physical therapy, for example — and the independent contractors who handle coverage decisions for Medicare.
"If you have any relatively long-term care needs, Medicare contractors regularly deny coverage," Stein says.
Long-term care insurance can ease some of the financial burden. But experts say this type of insurance often doesn’t cover what patients need.
Many families must turn to Medicaid to pay for in-home and long-term nursing home care. Experts say most states’ Medicaid programs allow the patient’s spouse to keep their house and one car. But coverage varies by state. For example, Indiana’s program covers assisted living, while neighboring Kentucky does not, forcing some patients to move. That's the kind of distinction that Stein thinks is nonsensical seeing that the goal is to keep people in their homes.
It can pay to fight coverage denials. Medicare's home care benefit, for example, is often wrongly refused for people who are home-bound, even if they aren't bed-bound, says Stein. Her elderly uncle won an appeal of such a decision — but his family was notified days after he died.
Shortly after Janis Kaump turned 97 and nearly eight months after Mary Kaump began working on an application for Medicaid, the Kaumps were notified that Janis was approved for coverage. And they needed it badly, Mary Kaump says, even though her in-laws had saved $400,000 to care for themselves in old age and "thought it was a lot of money."