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Nursing

It takes a village - and lots of money - to care for a parent with dementia

Jayne O'Donnell, and Laura Ungar
USA TODAY
Janis Kaump is 97 and has Alzheimer's. Her son, Randall Kaump, a doctor, and daughter-in-law, Mary Kaump, a former ER nurse, have worked to get her the care she needs, but it hasn't been easy.

It took a bout of pneumonia for Janis Kaump to get accepted into a nursing home, where she could receive the best care for her dementia.

Even though nursing homes aren't supposed to discriminate based on someone's ability to pay, "The patient needs to be accepted at the facility," says Judy Stein, executive director of the Center for Medicare Advocacy.

As a practical matter, she says, that means either being transferred from a hospital where they were admitted for at least two overnight stays "or that you have enough money to pay for the foreseeable future."

Got $730K saved for nursing care? Dementia could cost that much

Those are among the many challenges that 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.

That way, parents can have a say in their care when they are lucid enough to do so, and family members can know the patient’s wishes. They can also start thinking about ways to arrange caregiving among siblings, find the supportive services they need, adapt the parent’s home, and ensure that there is safe transportation to and from doctor’s appointments.

“We’ve heard horror stories from the field from people who didn’t plan ahead,” says Markwood.

Long-term care could break almost anyone's bank. Genworth Financial’s 2015 Annual Cost of Care study shows that for one year, the median costs nationally for a private room in a nursing home total $91,250, while a semi-private room is $80,300. The median cost for a home health aide is $45,760, $43,200 for a stay in an assisted-living facility and $17,904 for adult day health care.

Preplanning may even let families protect more of the patient’s assets, says Kelly Gannott, a partner at Kentucky ElderLaw in Louisville.

“Eldercare attorneys do far more crisis planning than preplanning,” she says, adding that about 75% of her firm’s work is crisis planning.

Janis Kaump, who lives in Hamden, Conn., just marked her 97th birthday, about four years after she was diagnosed with senile dementia. Janis' son Randy and daughter-in-law Mary Kaump tried a variety of living situations in the past few years until they settled on a $13,000-a-month shared room on the secure dementia floor of a nursing room.

Health care prices vary wildly: What can you do?

The family spent about $300,000 of Janis' money and $100,000 of the couple's to cover her care. This included a live-in health aide so that Janis could live in an apartment, which was her first choice, while the couple had one child in college and another in medical school. But when that solution proved both too expensive and untenable when her dementia worsened, they moved her into the nursing home.

The nursing home's financial counselor advised Mary on everything she'd need to do to file for Medicaid, seeing Janis' money would soon run out. Mary spent nearly eight months gathering all of the paperwork, and Janis was approved about a month after the application was submitted. Mary thinks that's a testament to how thorough her record gathering was. The documents filled two large boxes; the bank costs for making check copies totaled about $200 alone.

Mary, a former emergency room nurse, stopped working two years ago in part to help with Janis and her own mother, who was also having health issues in Maryland. It's an option the couple recognizes many people don't have.

"I was very fortunate I had Mary, who could do all this," says Randy Kaump, an obstetrician/gynecologist. "I would not have had the time, nor do I have the temperament to deal with it."

It could overwhelm anyone. Lewis suggests that people seek advice from eldercare attorneys, who can help navigate the financial morass, sort out power-of-attorney issues and help patients write living wills.

Area agencies on aging or non-profits like the Alzheimer’s Association can also help, as can geriatric care managers — although many of these consultants charge a fee, and those who don’t are often associated with specific nursing homes. Word of mouth is one of the best ways to find experts who can help with your caregiving search, but there are many other resources that exist to help people navigate the health care system.

Still, the process remains emotionally — and financially — draining even for a doctor and a nurse, as the Kaumps are.

Randall Kaump, with his mother Janis Kaump who is 97.

Judy Stein, founder of the non-profit Center for Medicare Advocacy, has been an eldercare attorney for 40 years but says she has still had problems getting appropriate coverage for her own extended family in a timely fashion.

The center filed a class-action lawsuit against the Department of Health and Human Services in 2011 over its so-called "two midnight" rule.

Stein recommends that families ask the doctor or nurse if a patient has been officially admitted to the hospital or is simply considered on "observation status" as an outpatient. That can occur even if they stay overnight. Often, she says, doctors don't think it matters in terms of the care they give and that it's simply a "billing matter." But it can make the difference in whether a patient with dementia gets important 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."

Here is what the Alzheimer's Association suggests asking of potential providers:

  • Do they offer specific services the person with dementia needs?
  • Is family involved with creating and reviewing care plans? 
  • Is the staff trained in dementia care or have experience in working with someone with dementia? Are those credentials verified?
  • Does the agency, service provider or care facility conduct background checks on all staff?
  • What is the procedure if the care provider is sick, on vacation or quits? 
  • Could they provide at least three families that you can call as references? Contact the families and ask about their experiences, the care the patients received and any concerns they had.
  • For adult day/respite care providers or residential care, arrange a meeting with staff and take time to look around. Are individuals involved in activities? What is your overall feeling about the environment? 
  • For in-home help, ask if the care provider can come to your home to meet you and the person with Alzheimer's. Pay special attention to how well the care provider interacts and communicates with the person with Alzheimer's.

RESOURCES

The National Clearinghouse for Long-Term Care Information has information to help families plan for future long-term care needs at healthinaging.org.

Eldercare.gov, a service of the federal government run by Markwood’s organization, connects people to services, including legal and financial, for seniors and their families. The services on this site are vetted, as is the information in the clearinghouse.

Search for "Nursing Home Compare" at the Centers for Medicare and Medicaid Services' Medicare.gov to help choose a highly rated nursing home.

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