Cost of Alzheimer's can devastate family's finances

For people who have early-onset Alzheimer’s, which means their symptoms began before age 65, loss of income is just the beginning of their financial woes.

If things get any worse, and they most likely will, Ken and Robin Hulse may have to sell their home. It's hard to say what might happen. Every day since Ken was diagnosed with early-onset Alzheimer’s disease has brought with it a new set of problems and more uncertainty.

How will Robin manage without Ken’s health insurance? What if he has to go to an adult day care center? What will happen when his long-term disability runs out three years from now?

“We were preparing for retirement, not Alzheimer’s,” said Robin, Ken's primary care giver

ExploreRELATED: Pat Summitt, winningest Division 1 College basketball coach, dies of Alzheimer's, was 64

The Peachtree City couple’s search for solutions highlights both the emotional and financial challenges confronting an ever growing number of baby boomers who are finding themselves in the same panicky predicament.

Experts say 5.4 million Americans are currently living with Alzheimer's disease and about 10 million baby boomers are expected to develop the disease in the coming . In fact Alzheimer's is quickly becoming the defining disease of the baby boomer generation and a budget-busting one for families, particularly women, who make up more than half of caregivers.

According to the Alzheimer's Association, the average lifetime cost of care for an Alzheimer's patient is $174,000. In 2011, the overall cost of health care, long-term care and hospice  was $183 billion; by 2050 that cost is projected to be $1.1 trillion. RELATED: Few families prepared to deal with the costs of Alzheimer's

For people who have early-onset Alzheimer’s, which means their symptoms began before age 65, loss of income is just the beginning of their financial woes.

" I don’t know what’s going to come,"  Robin said. "That's what's so scary."

Costly options

At age 56 and 62, respectively, Robin and Ken are learning that the financial security measures they took are hardly adequate for what lays head. When symptoms of the disease began to impede his job performance, Ken was forced to leave his $62,000 customer service job at SITA, an airline information company.

Now he receives about $3,400 a month in Social Security and disability payments, a sum that decreases in three years when his disability insurance ends. Compounding the situation is the impending loss of the couple's health insurance, which was provided through Ken's former employer. Because he's not yet 65, Ken doesn't qualify for Medicare, and the couple's income and assets disqualify them for Medicaid.

“The only way to qualify for Medicaid is to spend virtually all the assets they have," said Kevin M. Lynch, a certified financial planner and assistant professor of insurance at The American University. “It really presents a challenge for most middle income Americans.”

If anyone had told them five years ago that they'd be in this place with so many unanswered questions and so much uncertainty about their future, they would not have believed it.

On the advice of their attorneys, he said middle class couples like the Hulses will artificially impoverish themselves in order to qualify. "It’s a legal and ethical situation that needs to be addressed.”

On average, Lynch said, it costs about $21 an hour nationally for home health care. If Ken is able to manage without direct supervision, adult day care is about $70 per day. If his condition becomes so severe that he needs to be in a nursing home, the cost for a private room will be closer to about $87,235 a year, higher in some states, lower in others.

The problem is, in most cases it isn’t skilled nursing care that patients need, said Lynch. It’s custodial care, which isn’t paid for by Medicare.

In fact, Lynch said, Medicare provides long-term care only in very limited circumstances. If a physician prescribes a plan of care requiring skilled nursing care, Medicare will not pay for more than 100 days.

On average, he said, long-term care stays last about 835 days.

"This fact makes it clear that Medicare is not a viable alternative for the vast majority of those requiring long term care," he said.

"This fact makes it clear that Medicare is not a viable alternative for the vast majority of those requiring long term care,” he said.

The best way to prepare for the financial devastation of an Alzheimer's diagnosis is to buy long-term care insurance, said Lynch.

ExploreALSO on AJC: New Parkinson's treatment gives Atlanta musician an encore

Long-term care insurance provides custodial care -- at home, in assisted living facilities, adult daycare facilities or nursing homes. It is different from skilled nursing care in that there is no expectation of recovery or improvement. The cost of a policy is determined by the policyholder's health, age and the length of coverage desired.

"The older you are, the greater the premiums will be," Lynch said.

The annual cost for a healthy 55-year-old married male whose policy pays $150 a day for 36 months after the deductible, ranges from $1,300 to $1,700. The same person age 64 would expect to pay $2,000-2,500 a year.  Premiums for females are slightly higher and married couples applying together get the most favorable rates.

"It was huge and not even a possibility," she said.

A big challenge

As they had done when they started making their retirement plans, the Hulses sat at their kitchen table one day early this month rummaging for a little clarity as their dog Rosie, adopted three months ago when the couple was badly in need of a reason to smile, trotted back and forth.

If anyone had told them five years ago that they’d be in this place with so many unanswered questions and so much uncertainty about their future, they would not have believed it.

The Hulses, who met while living on Long Island, N.Y., had made a good life for themselves. When they moved to Peachtree City in 1988, they had every reason to believe things would only get better.

They were looking forward to retirement and seven years ago bought a house on the eastern shore of Mobile Bay, Ala., to be close to the water again. Ken planned to work until 65 to maximize both his Social Security benefits and 401k balance. Robin would continue to work as a real estate agent.

Sometime in the winter of 2009, Ken began having trouble keeping up at work, and he parted ways with SITA. He left on disability and after several rounds of medical checkups, doctors diagnosed Hulse with early-onset Alzheimer’s.

That single moment wiped out years of planning, and the Hulses found themselves in a world of uncertainty.

The biggest challenge now is figuring out all the pieces.

"About 70 percent of people with the disease live at home and their families provide 75 percent of their care," Hall said.

"We’re doing a lot better than a lot of people and I know that," said Robin. "But we didn’t plan well enough. It would bankrupt our family if I ever had to quit work and take care of Ken full time.”

If that were to happen, Robin Hulse would join about 15 million other Americans who provide 80 percent or about $375 billion dollars worth of long-term care for a loved one with Alzheimer's, Eric J. Hall, founding president and chief executive officer of the Alzheimer's Foundation of America.

“About 70 percent of people with the disease live at home and their families provide 75 percent of their care,” Hall said.

Alzheimers by the numbers

$21: Hourly rate for home health care

$70: Daily rate for adult day care

$87,235: Annual rate for private room in nursing home

$174,000: Average lifetime cost of care for an Alzheimer's patient

$33.6 billion: Annual loss of productivity by family care givers

$226 billion: Overall cost for Alzheimer's patients in 2015

$1.1 trillion: Projected overall cost for Alzheimer’s patients in 2050

Source: Kevin M. Lynch, certified financial planner; Alzheimer's Assocation

There are some programs — albeit with restrictions — that provide financial assistance for family care givers in , including those for veterans. In addition, respite care grants are available to people in financial need, including those provided by the Alzheimer's Foundation of America.

The Hulses plan to explore those options, but "overburdened care givers typically don’t have the time to do the digging to find available resources," Hall said. "That’s why it’s important to reach out to national and local Alzheimer’s groups that can help navigate support services.”

The physical and mental toll the disease has on caregivers like Robin and the lost productivity to businesses also figure into the costs of the disease, said Hall. Because family care givers like Robin Hulse generally have jobs, the productivity loss to the country amounts to $33.6 billion per year.

“The experience of care givers getting sick themselves is very real,” Hall said. “It’s part of the [cost] that Alzheimer’s brings to bear on families all over this country.”

Robin is already feeling the toll on her.

“It gets to be exhausting,” she said. “He used to be able to help but now I have to figure out everything.”

Ken Hulse was the cook of the family. Now he forgets they need to eat. He once took care of half the bills and made sure he kept his doctor’s appointments and took his medicine. Now it’s up to Robin to do all those things because he can’t remember.

To provide some relief to care givers, Hall said his  foundation recently made recommendations to a U.S. Department of Health and Human Services advisory counsel that family care givers receive tax credits and Medicaid and Medicare cover adult day care and respite services.

‘There is no doubt there is a need for folks with Alzheimer’s disease to have the opportunity for socialization and mental stimulation,” Hall said. “It goes a long way in helping stave off the progression of the disease and is an investment in helping care givers stay healthy.

“If we can help care givers keep loved ones home for a longer period of time, it ultimately saves money,” he said.

“I want Ken to be able to have what we always dreamed of,” Robin said. “We want to have fun while we still can.”

ExploreALSO on AJC: Are Alzheimer's symptoms reversible?

Follow writer Gracie Bond Staples on Facebook