‘Everybody knows somebody’: This state is a laboratory for the future of Alzheimer’s in America

North Dakota’s sparse geography has long made it a natural frontier: Pioneers here pushed the boundaries of westward expansion, then agriculture, and recently domestic oil drilling. Now the state finds itself on the leading edge of a new boom that it never would have chosen: Alzheimer’s disease.

Cases are climbing across the United States, and especially in North Dakota, which has the country’s second highest death rate from the disease. While Alzheimer’s is the sixth leading cause of death nationally, it already ranks third here.

“Everybody knows somebody” affected by the disease, said Kendra Binger, a program manager with the Alzheimer’s Association of Minnesota and North Dakota. As public awareness rises along with the numbers of cases, “it’s hard to ignore anymore.”

This makes the state an ideal laboratory to glimpse at the future of Alzheimer’s in America, and to identify strategies that could help the rest of the country cope. The devastating disease has strained families and the state budget. So North Dakota — a place that prides itself on personal independence and financial parsimony — has found new ways to support its residents and a new consensus to spend money on prevention.

The state’s primary strategy is to assist family caregivers — the estimated 30,000 North Dakota spouses, siblings, sons, and daughters looking after loved ones with dementia. A half-dozen consultants roam the state to evaluate families’ needs, train caregivers, connect them to services, and offer advice. Studies show the program has helped families keep their loved ones out of nursing homes and save the state money.

“We are not well-prepared, to put it mildly,” to respond to the growing Alzheimer’s crisis across the country, said Marc Cohen, clinical professor of gerontology and director of the Center for Long-Term Services and Supports at the University of Massachusetts, Boston. Since the burden of caring for dementia patients falls heavily on family members, he added, strategies like North Dakota’s are “exactly what is needed.”

Betty Mahlke, a retired bookkeeper, discovered the impact of North Dakota’s approach two years ago, when her husband, Larry, started forgetting everyday details — a troubling symptom of the Alzheimer’s diagnosis he’d received years before. It’s lonely enough caring for a loved one with dementia in the heart of a city, surrounded by service organizations and care options. But like Betty, many of North Dakota’s growing ranks of family caregivers are doing it in far lonelier places: on isolated farms or in small towns across 350 miles of the Great Plains.

The Mahlkes lived in Jamestown, a city of 15,000 halfway between Fargo and Bismarck, a hundred miles from each. Jamestown is hardly the state’s most remote community; it is home to the National Buffalo Museum, a stock car racetrack, and high school football games that Larry Mahlke loved to frequent. But it has limited support services compared to a big city. So when a visiting consultant, Beth Olson, came to give a presentation on dementia at the local senior center in March 2015, Betty seized the chance.

“Every little hint” about how to care for Larry resonated, Betty recalled. “I was just grasping for anything that could help.”

Soon after, Olson visited the Mahlkes at home, and that began a relationship that would carry Betty through the deepening challenges to come. At first, Olson suggested puzzles and games that could help Larry, a retired furnace installer and insurance salesman, keep his mind active. When he later stopped recognizing his own home, she coached Betty on the best response. Instead of arguing, Betty would invite him into the car, drive a few blocks, drive back, and say they were home. Sometimes the gambit worked, Betty said. “Other times he’d say, ‘This is not my house,’ and we’d have to drive around some more.”

Olson’s personalized support of the Mahlkes is North Dakota’s model for easing the burden of Alzheimer’s and other forms of dementia. Olson is a care consultant with the state’s Dementia Care Services Program, established in 2009. Republican state Senator Dick Dever proposed the program after discovering personally the difficulty of caring for a family member with Alzheimer’s. The state Legislature approved it with overwhelming support in both houses. Michigan is now piloting a similar program in three counties and working to expand it statewide.

What makes North Dakota such an Alzheimer’s hot spot? Like much of the rest of the Midwest, it’s graying. Rural counties are emptying out as young people depart for better job prospects elsewhere, leaving an earlier, aging generation behind. This is a familiar story for Betty Mahlke, whose four grown sons all settled out of state (in Minnesota, Nevada, and Idaho) for the sake of work.

The youth exodus has been countered in North Dakota by a flood of young arrivals coming to work the oil fields — but only in a fraction of the state’s counties, and not enough to divert the overall trend. The state still has a high ratio of elderly residents. Especially large is the group called the “oldest old,” those age 85 and over, who are dramatically more likely to die from Alzheimer’s than the group age 65 and over. In the latest US Census, only Rhode Island had a larger portion of its populace in the “oldest old” range.

Still, that explanation doesn’t satisfy Dr. Donald Jurivich, chair of geriatrics at the University of North Dakota School of Medicine and Health Sciences, who believes there’s more at play than migration patterns. When he shows his colleagues North Dakota’s high dementia numbers, he said, “People have pretty much been stupefied.” Why wouldn’t Rhode Island, with its higher ratio of “oldest old,” match North Dakota in dementia deaths? And why not Iowa, whose population of “oldest old” is nearly as high? The only state with a comparable ratio of the very elderly whose dementia death rate surpasses North Dakota is neighboring South Dakota.

Jurivich and his colleagues have speculated on a host of possible causes, none yet proven: Perhaps North Dakota’s high Alzheimer’s death rates could be explained by radon exposure, a meat-heavy diet, genetic predispositions among the northern Europeans who settled this part of the Midwest, or simply state-by-state differences in record keeping. He’s applying for grants to fund further study to solve the mystery.

The Dementia Care Services Program, meanwhile, has to cope with the realities on the ground. The program, run by the regional Alzheimer’s Association, substantially expanded the shoestring work that the association was doing before 2009. Previously, two consultants had covered the entire state, counseling families one-on-one (including Dever’s family) and raising their own funds. Thus stretched, they couldn’t range far beyond Fargo and Bismarck, the two largest cities.

Now, six care consultants do the job, dividing the state into eight zones. As Olson did with the Mahlkes, the consultants assess patients’ needs, teach caregivers what to expect and how to respond, refer them to services, lead support groups, and answer questions by phone and in person. Importantly, they often visit patients’ homes, even those in the remotest corners of the state. Between January 2015 and this February, nearly three-quarters of the 2,602 consultations were done in person.

Deaths from Alzheimer’s have jumped 74 percent since 2000 in North Dakota, and the program’s caseload has similarly exploded. The number of families served has risen steadily since 2011, from about 500 in every two-year period to a current pace that could double that. The program costs the state $600,000 a year.

The program’s main purpose is to help families keep loved ones with dementia at home, rather than in a nursing facility, for longer. With average nursing home costs running over $8,000 a month per patient, and the state’s share of Medicaid paying half the price, even a few weeks’ delay can make a dent. For families, having the knowledge and support to keep a loved one at home can also make a big emotional impact, relieving the bewilderment and burnout that often afflicts caregivers and preventing costly, avoidable medical care for patients and caregivers alike.

That’s what it did for Betty Mahlke. Though the caregiving exhausted her, she couldn’t stomach the idea of moving her husband into a care facility. When Larry eventually couldn’t recognize even her, Olson had already prepared her for how to respond.

“We’d be sitting in the living room and he would look at me strangely, and you could see that fear in his eyes, that this lady is not anybody he knows,” Betty recalled. “There were times when we’d go to bed at night and he’d lay on the edge of the bed, stiff as a board.” When Larry said, “Where’s Betty?” she knew to reassure him: “I’ll go try and find her.” Then she’d leave the room, change her shirt, and come back in.

Without that preparation, Betty said, she wouldn’t have known how to handle Larry’s confusion. And if she’d had to travel to a bigger city to attend the presentation that first introduced her to Olson, she’d never have gone. All told, without the Dementia Care Services Program, she said, she could never have kept Larry at home for so long.

A formal evaluation of the program backed up stories like Betty’s with statistics. The study, conducted at the University of North Dakota Center for Rural Health, looked at the first 3 1/2 years of the program. Caregivers reported that it helped them feel more empowered, less likely to need emergency room visits and hospitalizations for their loved ones, and less likely to place their loved ones in long-term care. The researchers estimated the resulting cost savings at $800,000 for medical and hospital services avoided and $39 million for long-term care.

Michigan, too, studied its similar, small pilot program and found that it reduced nursing home placements by more than 9 percent and saved the state over $500,000 in a single year.

The bottom line, said Brad Gibbens, deputy director of the UND Center for Rural Health: “If you can provide some support services for the family caregiver, you can improve the lives of those with dementia and the family caregiver, and likely save the public taxpayer some money.”

Even so, the North Dakota program lost over 10 percent of its funding in a budget crunch last year and could face further cutbacks as the state grapples with a continued shortfall. This comes as Republican congressional leaders in Washington have proposed capping Medicaid money sent to states as part of the Affordable Care Act repeal, which could make such dementia care programs all the more important.

Over the past quarter-century, the balance of Medicaid money spent on long-term care has shifted away from nursing homes and toward more home- and community-based care. UMass Boston’s Cohen warns that the proposed caps could reverse that trend, resulting in cuts for optional support programs and thus sending more patients into nursing homes.

“If there is less money available to pay for home and community-based care,” he said, “families will have to pick up the slack — or people will have greater unmet need — and training to make them more effective will become more important.”

As the number of Alzheimer’s patients grows and federal dollars potentially dwindle, other states are likely to need to develop similar supports for families, for reasons both humane and pragmatic. “We know people do better at home, and people want to care for their loved ones at home,” said Gretchen Dobervich, a one-time field director for the regional Alzheimer’s Association who now represents Fargo as a Democratic member of the state Assembly. Plus, “with the large numbers of people we’re going to see with this disease, there’s no way we’re going to be able to have enough care facilities to treat the number of diagnoses we’re going to see.”

The North Dakota program ultimately enabled Betty Mahlke to care for Larry at home until just three weeks before his death. One day in March 2016, a year after entering the Dementia Care Services Program and six years after his initial diagnosis, Betty went out for a few hours and left Larry in the care of a health aide from a company Olson had helped her find. Larry, disoriented and distressed, shoved the unfamiliar woman and walked out of the house, searching for Betty. He walked a block in the late-winter cold without a coat or shoes on. Betty told Olson, who happened to be in town for an event, and the two of them brought him home.

The next night, his last night at home, Betty and Larry had a picnic dinner in the living room and danced waltzes like they had as younger sweethearts. The following day, Betty brought him to a nursing home, where hospice helped pay part of the staggering $1,860-per-week cost. Larry died less than three weeks later, at age 74. The Mahlkes had been married for 51 years.

“I don’t think that he suffered” during those few weeks in the nursing home, “so that was a blessing,” Betty said. “I did it for my husband, and I know he would have done it for me.”