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.

Farmstead: North Dakota
The Ormistons’ farmstead sits among a grove of trees near Nekoma, N.D. Like Alan, many of the state’s growing ranks of family caregivers are living 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.

“I was just grasping for anything that could help.”

Betty Mahlke, whose husband had Alzheimer's

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.

Alzheimer's Association North Dakota
Alan Ormiston stays close to Jo at the couple’s home. They married in September 1959 and raised four children together.

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.

Alzheimer's Association North Dakota
Alan Ormiston turned to the regional Alzheimer’s Association to help guide him in caring for Jo. “He has risen to the challenge,” says Barb Kram, the couple’s youngest daughter. “It’s been amazing to watch.”
Alzheimer's Association North Dakota
Olson, seen visiting with the Ormistons, is one of six consultants who travel the state to evaluate families’ needs, train caregivers, and connect families to services.

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.”

Alzheimer's Association North Dakota
Olson spends a portion of her time on the road visiting families and giving public presentations.

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.”

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  • The elephant in the room that no one ever wants to acknowledge is the enormous family commitment it takes to keep someone with dementia at home as long as possible.

    We assume there’s a spouse or partner who is willing and able to be the primary caregiver. We don’t talk about the many older adults with dementia who live alone.

    We assume it’s cheaper to bring in outside help. We’re often unaware that even though homemaking and senior companion services cost less per day, they may be required over a disease trajectory that lasts many years and can cumulatively cost almost as much as a nursing home — and generally come out of pocket because they aren’t covered by Medicare.

    We don’t consider the tradeoffs: that people who remain at home can be much more isolated and lonely and bored unless someone is working diligently to provide them with social contact and meaningful activities.

    We overlook the ongoing work of home maintenance — changing the furnace filter, cleaning the gutters, mowing the lawn, shoveling the driveway, etc. etc. etc.

    We overlook the ongoing responsibility and effort of coordinating the services, making the medical appointments, dealing with the little emergencies that arise, managing the prescription medications, dealing with insurance claims.

    We overlook all the things that are part and parcel of being an American adult. Who files the taxes? Who keeps an eye on the credit cards? Who keeps up with the property insurance premiums? Who takes care of the car?

    And we certainly don’t like to talk about the more difficult dementia-related behaviors, such as aggression, that may require psychiatric intervention.

    In an ideal world, a spouse/partner or adult child or other primary person could step in and manage all of this. We do not live in an ideal world. Much as I would like to keep my widowed mother with Alzheimer’s in her own home, it wasn’t feasible unless I stopped working – and the financial downside would have been enormous, unless you think losing 100 percent of my income and access to affordable health insurance is no big deal. FTR, Mom is thriving in assisted living, where she feels secure and has the level of activity and varied social contact that she craves.

    I think the answer is going to be different for each family and each individual. So we cannot be prescribing a one-size-fits-all everyone-should-remain-at-home solution.

    P.S. And can we please please please stop referring to them as dementia “patients”? My mom is only a “patient” in a medical setting. The rest of the time she is a person who happens to have dementia and is living her life like everyone else her age.

  • Bragging about how much is saved in tax dollars by limiting nursing home care is an example of how unwilling we are to care for our most vulnerable and needy seniors. Saving money is more important. That’s what happens when health care is treated like a commodity.

    • It depends on WHY the money was saved. If the Alzheimer’s patient can stay in their own home with supportive and respite care provided to his caregiver, that has to be cheaper and arguably better for the patient than going to a nursing home.

    • Seems like health care is already a commodity in the USA unlike the rest of the Western developed countries but I can tell you Canada is struggling with this even with universal health care.

      This is going to be a game changer in the next couple of decades and strain medical services, hospitals, long term care facilities and hospices that are already under stain, unless someone comes up with the ultimate cure. And bottomline we knew it was coming but we aren’t ready for it.

      There are drugs that can delay it but only works for so long. It helped my mother stay at a plateau for 3 years so that was 3 good years. There has been some interesting developments scientifically so fingers crossed.

      We need to teach today’s children and young people that being healthy and active and social all one’s life is important in ways you just don’t realize now and teaching them how to do it – if you didn’t get dealt the Alzheimer genetic card, lifestyle matters. And let’s face it, health care costs in general would be so much less if we all did what good for us. That should be a bigger focus of health care. Prevention is cheaper.

  • I agree withe the respondent below, this program should be adopted throughout the US. Little things can make a big difference in the care of a dementia patient.
    Real good article

    • Sadly, dementia itself can be fatal. General wasting, malnutrition, and dehydration occur when someone with dementia can no longer eat safely or move without assistance. These can lead to blood clots in the lung, a heart attack, or a stroke. Debilitation can result in an inability to fight off a urinary tract infection, respiratory infection, or blood infection. Asphyxiation is also directly caused by dementia.

    • A lot of people with Alzheimer die of other diseases first, like my mother who had emphysema, which killed her first. Emphysema and Alzheimers is a double whammy to your brain. The brain needs oxygen and when you have emphysema less oxygen is getting to your brain. But in essence with Alzheimer your brain is dying.

      I also agree the longer you can keep a loved one home the better if you can but it is not easy.

  • I am so proud of my brother & his family the way they care for Jo. It is wonderful to see the pictures & the article. I so wish there had been something like this when our father cared for our mother for 10 years. He had a heart attack so he couldn’t care for her. She went into a home in Mayville, ND where my sister lived. Donna had dad spend time with her so he could get up to the home to see mother often. God bless them all!!!?❤️

  • I’m so pleased to see the direction that this has taken! As a founding member of the Eastern ND chapter, we struggled to get services and education out. A huge thank you to those providing this important outreach! Bless you!

  • Wow, there are some clever ideas in that article! I never would have thought of putting the patient in the car and driving around.

  • What an amazing story! North Dakota has been focused on the future of caring for people with Alzheimer’s disease. I hope this great program continues for everyone in the state.

  • This program should be adopted throughout the US. Little things can make a big difference in the care of a dementia patient.

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