Alzheimer’s may be coming for your mind and your wallet

Barbara Bath remembers her husband, Jim, as “brilliant.”

A military veteran from Ellsworth, Jim Bath was a reading specialist, and a history and psychology teacher at Wichita South High School. He retired in 1994 and got a job that he loved delivering cars for Enterprise Rent-A-Car.

Christmas was his favorite time of year, Barbara said.

Then, nine years ago, “When we started to put the tree together, he just could not figure out how to plug the sets of lights together,” she said. “I thought to myself, ‘That’s not my Jim.’

“Decision making and problem solving are among the first things to go,” she said.

Alzheimer’s and other dementias are evolving into a burden of dramatic proportions for Kansas and the nation as baby boomers enter old age at a rate of 10,000 people a day.

While the likelihood of any one person getting dementia appears to be falling as overall senior health improves, the total numbers of people with dementia are rising. In the U.S., the number of people afflicted with dementia is projected to more than double – from 5.2 million now to 13.5 million by 2050 – according to the Alzheimer’s Association.

That would mean that by 2050, 3 percent of the U.S. population would have dementia. Those who work in the field say the federal government, state governments and American families haven’t prepared for the size of the problem.

The Alzheimer’s Association estimates that in 2015, dementia care cost $226 billion a year. Without a medical breakthrough, that will rise to $1.1 trillion annually by 2050.

That will mean higher taxes or less spending by Medicare and Medicaid on costs not related to dementia. It will also mean more “memory care” facilities for those who can afford it. It will mean more research and treatments to slow or lessen the effects of dementia.

And, as Alzheimer’s and dementia become more common, it will mean less stigma. The disease will no longer be embarrassing or the subject of mean-spirited humor, said Stephen Benson, a clinical psychologist who specializes in helping dementia patients and their families.

“It was a punchline, and even today I still hear jokes all the time,” Benson said. “You laugh, but it’s not OK. The person is losing how they define themselves.”

Barbara and Jim Bath

Jim, who will be 82 this month, was diagnosed with Alzheimer’s in 2013.

It wasn’t a surprise. He had lost the ability to navigate in a car, so he lost the job at Enterprise.

He wasn’t prone to wandering, but Barbara tells one horror story: One day she looked around and realized she hadn’t seen Jim for a while. She scoured the house, then noticed the car was missing. Jim still wanted to drive, and now he was out – somewhere.

Panicked, she called police. A few hours later, she got a call from the Highway Patrol: Did she know a Jim Bath?

Jim got lost and wound up driving the wrong way down K-96 in west Wichita. He was confused when the oncoming cars frantically flashed their headlights. The patrolman later told Barbara that he had to cross over the highway, come up from behind and flash his blue lights before Jim realized that he needed to pull over. He had driven 94 miles trying to find his way home.

He gradually lost more and more of his faculties. Because he was a veteran, the Veterans Administration covered many everyday non-medical expenses. The Baths also had long-term health insurance, which covered the cost of in-home care for four hours a day.

But then the risk of one or both of them falling down the stairs became too great. Jim has been in Comfort Care Home for about 18 months.

With Jim in a care home, Barbara is going back to work part time, at age 78, because money is tight.

She chooses to cherish what she has left.

“You lose them a little at a time,” she said. “I see Jim every day. We take a little walk every day, and that is a real joy moment. He recognizes me. He can’t speak, but he laughs.

“We count all the good things we can do, and we let go of the things he can’t anymore.”

$62,000 a year

After diagnosis, Alzheimer’s typically runs another four to eight years — or as long as 25 years — depending on at what stage it was diagnosed and at what age it strikes.

In the early stages, the individual – along with a spouse and family – likely can manage on their own with some advice. By mid-stage, the patient needs help bathing, eating, dressing, walking and getting out of bed. And the main caregiver is likely to need time away.

By late stage, which can last years, the patients can’t care for themselves. They are incontinent; may not be able to walk, talk or sleep for long periods of time; can be combative; and can fall at any time. They are typically in assisted living or skilled nursing care.

Who pays for all that? An imperfect mix of Medicare, Medicaid, out-of-pocket spending and, maybe, insurance.

“It’s complicated,” said Teresa Hatfield, family and consumer science agent with Senior Health Insurance Counseling for Kansas.

Medicare, the government health insurance for the elderly, covers visits to the doctor; outpatient services, including emergency room visits; and in-home visits from physical and occupational therapists through Part B. It covers some of the cost of drugs through Part D.

Long-term care insurance may pay hundreds of thousands of dollars toward such costs, depending on the policy. But it costs several hundred dollars a month in premiums, and only about 10 percent of seniors have it.

Medicare doesn’t cover in-home aides, who help with bathing, cooking and cleaning, or long-term care in an assisted living or skilled nursing home.

In Kansas, according to a just-released study by insurance company Genworth, the cost of private-pay, in-home care and assisted living care averages about $45,000 a year. That rises to $62,000 a year for skilled nursing care.

Medicaid, called KanCare in Kansas and administered by three private companies, will pay for long-term care, but patients must first exhaust their savings. And, because Medicaid pays less than the private-pay rate, many assisted living and nursing homes won’t take Medicaid patients or will limit the number of beds for those patients.

It can take time to find a Medicaid bed, said Jenna Smith, family care coordinator at the Alzheimer’s Association. Having cash available can ease the transition.

“I try to educate people that, if there is any way possible, they should have six to 12 months of private pay,” she said.

For those reasons, the finances of the elderly may be more precarious than they think, said Doug Stark, owner of Comfort Care Homes.

“Think about it: You got $250,000 in your 401(k) and are feeling fat and happy, and all of a sudden the wife gets Alzheimer’s,” he said. “That is only three years of care.”

Overwhelming numbers

The growing number of elderly in the U.S. is expected to overwhelm any declines in the dementia incidence rate.

In Kansas, an estimated 51,000 people have dementia, nearly 2 percent of the state’s population. The Alzheimer’s Association estimates that could rise to 62,000 by 2025 and could double by 2050 without any kind of medical breakthrough.

Nationally, the increase in people with dementia over the next three decades will balloon government health care spending. The association estimates that Medicare and Medicaid spending on dementia care will rise from $154 billion in 2015 to $765 billion in 2050. By 2050 the amount spent for dementia care will nearly equal the existing budgets of Medicare and Medicaid.

Experts say spending on dementia treatment is more of a time bomb for the federal budget than Social Security or cancer treatment. A significant medical breakthrough must happen soon to change the cost curve, or some unpopular political decisions will have to be made — or both.

“When you look at the trajectory, the numbers you’ll be dealing with in 10 to 15 years are an astronomical mess,” said Stark, the president of Comfort Care.

If you can afford it

Private companies are available to accommodate the needs of dementia patients who can afford the care.

At Regent Park Memory Care, 10600 E. 13th St., patients have daily programming in a spacious, sunny, carpeted room. On a recent visit, residents were seated at a counter icing cupcakes they had helped bake, as a cheerful staff member assisted and talked with each one.

August is National Watermelon Month, and the residents got to handle and smell chunks of watermelon as a way of evoking deeply buried memories and associations. The staff is attuned to the different levels of mental acuity of each patient.

In one room, a resident handled a white furry electronic seal about the size of a cat that had big, dark eyes. It seemed like a simple robot, but it remembers faces and is sensitive to how it is handled and responds. Its function is to comfort, especially when residents become agitated.

The center owner, Legend Senior Living Assisted Living of Wichita, charges a base rate of $3,625 a month for the smallest unit, plus tiers of services and medication management that can add another $400 to $2,000 to the monthly price.

For the moment, developers have overbuilt such memory care facilities, said Tim Buchanan, founder of Legend Senior Care and founder in the 1980s of the Sterling House assisted living chain.

For at least the next five years, there will be too many memory care rooms in Wichita and nationally, which means prices are competitive, he said. That will change as developers slow down and demographics catch up, he said.

Even so, he said, memory care is expensive. Labor is the biggest cost, at 40 percent of the total, and food is second. Cutting costs significantly means less programming, fewer services and lower quality food.

He sees possibilities to lower labor costs through more precise scheduling and use of technology such as the robot seal, which, he said, cost $20,000 for the unit and the training. But such options are limited.

“You’re not going to have robots giving somebody a bath,” he said. “We are in the service business, and there is a definite labor cost.”

Legend doesn’t take Medicaid. Buchanan is just as worried about the solvency of Medicare and Medicaid as anyone, but he has more faith in private industry to come up with solutions. It came up with assisted living in the 1980s as an answer to people unhappy with being sent to a nursing home.

There has to be a lower-cost solution out there, he said.

“The Jetsons did it, so it might be out there somewhere,” Buchanan said.

Anne and Bill Uhler

Bill Uhler is 81 and has Parkinson’s dementia, as well as Parkinson’s disease.

Anne is nine years younger, a trained nurse, and isn’t afraid to ask questions. Even so, she said, it has been difficult.

Bill has had some nasty falls on concrete, one of which ended his long-term volunteering at Via Christi St. Francis. Today, mostly in a wheelchair, he spends parts of three days a week at Catholic Charities Adult Day Services. That costs $75 per day, Anne said.

Bill had a career in the Air Force, retiring after, he said, “20 years, six months, 28 days, 10 and a half hours.” He worked as a technical writer and manager at IFR Systems.

Anne was a registered nurse at Via Christi for 38 years.

They met in Denver and got married after just six weeks. They sent a telegram home announcing the fact — from Las Vegas.

Family members thought they wouldn’t last. They laugh about it now, after being married for 49 years.

“Bill said to me three years ago, he said, ‘Do you think we’ll see our 50th?’ And, of course, I gave him the positive: ‘Absolutely. We’re going to fight till we see it.’ But deep down, I questioned it, with all the issues that he has.

“But I believe now that we will get there. Right, Billy?”

“Oh, yes,” he said.

Bill has dementia but can generally follow a conversation and respond if given time, Anne said.

Her biggest fear is that her health won’t hold up well enough to care for Bill. Her second biggest fear is that Bill will have to go into a nursing home.

The tragedy is that one of those will likely happen. She thought for a moment, and said:

“Well, then, I hope it’s one of those things where he goes and I go 30 seconds after.”

Anne acknowledges resentment when it was determined four years ago that Bill had Parkinson’s. No more cruises, no more normal life with the man she loves. Instead, she had to look forward to being his nurse for the rest of his life.

But she said she has worked through that and has come to believe she now performs her greatest duty.

“There is a terrible sense of loss,” she said, “ … but there is something about the spirit and prayer. You finally realize that there is still a lot of good, that there is still a lot you can do, and you better get over it.

“We will have bad days, but the majority of time you better get over it and enjoy what you have.”

This story was originally published August 6, 2016 at 2:06 PM with the headline "Alzheimer’s may be coming for your mind and your wallet."