As the ‘Silver Tsunami’ Hits the Flathead Valley, Dementia Diagnoses are Rising While Caregivers Reach a Breaking Point  

More than 50 years ago when Frank Shelt was a student at the University of Idaho, he picked up an extra job as a busboy at the Kappa Alpha Theta sorority to help pay for college. Two years after meeting Karen Sue in the sorority house, the couple got married on July 3, 1971, and spent the following decades traveling the world and moving across the Mountain West. 

Frank’s time in the U.S. Air Force and his career in the semiconductor industry afforded the couple opportunities that included a 15-month stint in England and trips to Taipei and Hong Kong while he was stationed in Korea. During Karen Sue’s career with the U.S. Forest Service, her job in timber sales led them to places like New Mexico and Idaho before they settled in Montana, retiring in Lakeside 15 years ago.   

“We got to see a lot of things together,” Frank said.  

Now in their 70s, life has gradually slowed down for the Shelts. But their once fast-paced lifestyle filled with travel and new connections took a dramatic turn four years ago when Karen Sue’s memory started slipping. She grew angry during the early days of her dementia, which was soon followed by fear. 

“She realized what was happening,” Frank said.  

Karen Sue was diagnosed with dementia in 2021 at age 69, but doctors still can’t pinpoint her specific condition. To compound her memory loss, the illness has affected her balance and coordination, confining her to a wheelchair. In recent months, her cognitive decline has left her mostly silent and docile.  

At age 77, Frank is his wife’s full-time caregiver, with his daily routine including house chores, helping Karen Sue in and out of bed, bathing, feeding and monitoring her. While their daughter lives at home and helps when she can, her full-time teaching job and school-aged kids keep her busy, and the caregiving responsibilities fall mostly on Frank. 

“I’m pretty much captured at home,” Frank said. 

Karen Sue is one of roughly 2,000 Flathead County residents who is suffering from dementia out of a total population of 22,000 people over age 65. Statewide, there were 21,000 Montana residents over age 65 living with Alzheimer’s while there are nearly 7 million nationwide, according to recent Alzheimer’s Association data.  

As baby boomers age and Americans live longer than previous generations, the elderly population will continue to grow and overwhelm many local resources, which includes nursing homes and memory care facilities. The projected volume of people who will develop dementia each year will double over the next three decades, according to a recent Nature Medicine study. 

According to 2020 Census data, the national demographic of people ages 65 and over grew nearly five times faster than the total population over the 100-year period stretching from 1920 to 2020, and the population segment has recently reached 55.8 million. 

But Montana’s senior citizen population is disproportionately higher than many other states, ranking No. 6 overall, with 19.7% of its population considered geriatric, according to 2020 Census data.  

Of this population, 9.8% of individuals in Montana suffer from Alzheimer’s.  

“We’ve been talking about the ‘Silver Tsunami’ coming, but in Montana it’s already here,” Flathead County Agency on Aging Director Carla Dyment said. “It’s important for the community to understand the reality that comes with that. We’re experiencing a rise in cognitive decline.” 

Like Karen Sue, much of this population requires full-time caregiving from family members, many of whom have full-time jobs or have their own health conditions. 

Last year, there were 17,000 caregivers in Montana who provided 25 million hours of unpaid care, a value of $478 million, according to the Alzheimer’s Association. More than half of caregivers took care of their loved ones while battling their own ailments and nearly a quarter of this group dealt with depression.  

“I think a lot of folks who are family caregivers – especially if it’s 24/7 – they don’t even think of themselves in this role,” Dyment said. “This is what they do because it’s their family member.” 

Since Karen Sue’s health began fading four years ago, Frank fell into the role while also helping his daughter take care of his three grandkids.  

“This is crazy – but one of the highlights of my week is grocery shopping,” Frank said.  

Frank gets his grocery-store breaks on Mondays and Fridays when a home health aide from Loyal Care In-Home Assistance drops by to help with some of Karen Sue’s basic needs and gives Frank some respite.  

Dyment says respite, which is defined as short-term relief for primary caregivers, is essential for family members who are caring for their loved ones because there’s usually not much opportunity for breaks.  

Through the Older Americans Act, which Congress passed in 1965, the Agency on Aging funnels some federal funding to caregiving contractors to provide respite support and connect families with resources. 

When full-time caregiving became too much for 78-year-old Rick Skyberg, he received help from a SYNERGY HomeCare aide who provided four hours of care per week for his wife. 

Rick used this time to take walks around Columbia Falls, a ritual he has done for the last 50 years. When his wife’s dementia became unmanageable, he had to scale back his walks.  

Nearly a decade ago, Rick’s wife, Kris, was diagnosed with Alzheimer’s. Although it was a slow progression, the last few years of her life required intensive supervision.  

“She was a wanderer,” Rick said. “She’d just take off and we’d have to go find her. She’d start walking down the road and one time she headed for the river. I caught her before she got over the bank.” 

Rick installed metal bars and deadbolts on the windows and doors and turned the braker off when he left the house. 

“I had a hard time doing my walks,” Rick said. “It got to where I’d come back and the coffee was going, but there was no water in it. Or one time there would be hot water in the bottom of the filter and no coffee.” 

But eventually, Kris required more assistance than Rick and the home health aide could offer, and Rick signed up for the waitlist at Meadow Lake Memory Care in Columbia Falls. After a nine-month wait, Kris was admitted to the facility where she received specialized care for the remaining year-and-a-half of her life.  

Kris died last November at age 76.  

After almost 58 years of marriage, Rick said the final years were tough, but he doesn’t dwell on the cards they were dealt, and he maintains a positive attitude.  

“I’ve always been crazy – but it keeps me from going insane,” Rick said. “You have to keep a sense of humor.” 

Rick remembers meeting Kris a few months after he left Minnesota and moved to Columbia Falls in 1966 when he got a job at Superior Lumber Co. They got married five weeks later, eventually raising two kids. Rick spent most of his career in the lumber industry and later worked the night shift at Kmart while Kris managed the Klothes Kloset thrift store on Nucleus Avenue for 27 years. The couple spent their lives together in the same home they purchased in 1972.  

Kris battled cancer a few times before she was diagnosed with Alzheimer’s. Rick was able to help his wife manage her dementia without assistance for a while, but eventually he needed help from the Agency on Aging. 

Dyment says most caregivers wait too long to ask for help, and while the Skybergs were able to get the care they needed, there’s not much the Agency on Aging can do for immediate relief. 

“We have people come to us and they are at their wits’ end,” Dyment said. “There really isn’t anything we can do that’s a quick fix.” 

According to Alzheimer’s Association data, more than half of people with memory problems have not talked to a healthcare provider. 

“Even though it’s scary and intimidating, it’s important to acknowledge it and talk about it with your healthcare provider and your family members because you can get resources sooner and you can activate a team sooner,” Dyment said.  

At The Life Care Experts in Kalispell, owner and nurse Jennifer Crowley has built a consulting firm that revolves around long-term planning. Partnering with the Agency on Aging and other organizations, she works with families to help them design a roadmap for their future. After years working as a nurse, she said there have historically been gaps in this healthcare sector.  

“I saw a lack of preparedness,” Crowley said. “It’s not anyone’s fault, but [society] focuses mostly on youth. Emotionally, we avoid or deny aging in a way because it scares us.”  

Crowley offers guidance to help design a plan and establish things like guardianship and setting up support networks for families. One challenge she often comes across is the healthcare workforce shortage, which she says has long been projected as baby boomers reach retirement age. 

According to the Alzheimer’s Association, the healthcare workforce in Montana needs to grow by 34.5% to meet the projected 2030 demand. In 2020, there were only 7,190 home health and personal care aides and there were only nine geriatricians in 2021. 

Dr. Deborah Lessmeier has been practicing family medicine at Logan Health for more than two decades and works on the palliative care team for hospice patients. In the last two years, she has seen an exponential number of dementia-related admissions. 

In some extreme examples, Lessmeier works with dementia patients who exhibit aggressive and violent behavior who sometimes wind up in the emergency room – a last resort for caregivers when they run out of options.   

“They say they just can’t do this anymore,” Lessmeier said. “We admit the patient to the hospital, then trying to get the patient placed is challenging because there’s a shortage of facilities. We have way less beds than we used to, and facilities can be really choosy. They can place pleasant dementia patients, but not the people that are more agitated. Those people stay in the hospital for a long time. We’ve had people living in the hospital for five or six months.” 

In 2018, there were 1,329 emergency department visits per 1,000 people with dementia in Montana, with a re-admission rate of 16.6%, according to Alzheimer’s Association data. Dementia patients accounted for 11% of hospice residents.  

The rising volume of older Montanans is outpacing the supply of nursing home beds – which doesn’t include memory care facilities – and challenges like workforce shortages and low Medicaid reimbursement rates led to the closure of 10 nursing homes in 2022.  

At Immanuel Living, CEO Jason Cronk oversees 300 residents located next to Logan Health with levels of care that include independent living, assisted living, memory support, acute and long-term care.  

In the memory support unit, there are 40 private rooms for Alzheimer’s patients with more than 50 people on the waitlist, a number that Cronk says has dramatically increased over the last few years. Dementia patients also require more staff, which continues to be a challenge as the workforce shortage persists.  

Cronk says Immanuel Living now has a stable workforce supply compared to recent years, but the nonprofit has historically struggled to recruit and retain employees partially due to low Medicaid reimbursement rates.  

While the reimbursement rate has increased to $283 in recent years, it still doesn’t cover the cost of care, which averages $440 per day per patient. 

“People with Alzheimer’s need more attention than somebody in general assisted living, so we staff according to their needs – that’s our challenge in the future is continuing to find more ways to expand living environments and also being able to staff,” Cronk said. 

To help meet the rising demand, the organization in recent years launched the Immanuel Living At Home program to provide in-home assistance for individuals who want to stay in their home and promote the “aging-in-place” model.  

The program brings in certified nurse assistants and aides to visit seniors at their home, using technology to monitor things like vitals remotely while also facilitating social outings.  

According to a 2021 AARP survey, more than 75% of adults over age 50 want to stay in their homes as they age. But many of these individuals who wish to age at home cannot always receive help from caregivers. More than a quarter of the population experiencing cognitive decline live alone, according to the Alzheimer’s Association.  

“There are a lot of folks out there who do live alone and may not have any of the supports that other people do,” Dyment said. “What does that mean when they go to the grocery store? What does that mean when they’re trying to live their daily life?” 

At the Agency on Aging, the Meals on Wheels program is designed to link these individuals with a hot meal but also by bringing a social connection and a welfare check from volunteers. 

Demand for the service has spiked by 80% since 2019, Dyment said, while the need for in-home care and support has grown by more than 50%.  

“Our Meals on Wheels program is such a core part of what we do and it’s important because it’s more than a meal – it’s a face-to-face connection,” Dyment said. “A lot of folks who receive Meals on Wheels feel safer in their home because someone is checking in on them.”  

But with a high volume of elderly folks who lack support, their cognitive decline can leave them with a diminished ability to function in day-to-day life, like forgetting to pay their bills or losing their medications.  

Sean O’Neill, a social worker at the Flathead Warming Center, has seen a significant rise in the senior homeless population in recent years and regularly serves individuals needing oxygen tanks, wheelchairs and walkers at the Kalispell facility.  

“The chronically homeless senior population is the most alarming thing we see,” O’Neill said. “Now, they may be having memory issues on top of preexisting conditions.” 

While warming center staff aren’t typically aware of their clients’ medical diagnoses, O’Neill said a high volume of guests over age 62 have memory issues and frequently lose their belongings and forget things like appointments.  

Attaining housing becomes nearly impossible for these individuals when they can’t remember to fill out applications or interview with a property manager, O’Neill said.  

Warming center staff usually try and connect these individuals to Brendan House at Logan Health, a 110-bed nursing home, but there is a long waitlist.  

“We’ve had multiple folks in their 80s,” O’Neill said. “Luckily we have connected them with other resources with a higher level of medical care.” 

In order to prevent the scenarios that O’Neill regularly witnesses at the warming center, experts stress the importance of planning ahead.  

At the Agency on Aging, Dyment says planning ahead for things like Advanced Directives, power of attorney and guardianship is a key component to help set seniors who are experiencing cognitive decline up for success before serious complications arise.  

“Some of the challenges we see is that folks get to the point where their dementia or cognitive decline has gotten to the point where they can’t make decisions on their own anymore – but they haven’t set anyone up to make those decisions for them,” Dyment said. “That’s why it’s important to be thinking ahead and planning as much as possible, talking to your healthcare providers and getting that paperwork and mapping things out before it happens, because it’s really hard to go back when someone has dementia.” 

But the vulnerability needed to have these conversations is often lacking for the parties involved, experts say. In Montana, whose population comprises generations of farmers, ranchers and loggers, people are often reluctant to ask for help. 

“We are fiercely independent, and nobody is going to tell us what to do,” said Melanie Williams, the executive director of the Alzheimer’s Association Montana Chapter. “We are tough – we survive so many things in Montana and it’s that stubborn independence.” 

Based out of Clancy, Williams works to bring resources to rural areas in the state while also educating families about dementia and helping to organize hospice and palliative care at earlier stages of the disease.  

Working with the Montana Department of Health and Human Services (DPHHS), Montana State University Extension and other organizations, Williams strives to destigmatize the disease and promote communication. 

“They don’t want to talk about it,” Williams said. “They will come to our education programs, but it’s still hard for them to share what’s happening. We’re really trying to get rid of that stigma in Montana and educate people to understand that this is a brain disease. We’re fighting the same battle as mental health and getting people to accept it – especially that 65 and older generation.” 

Crowley – with The Life Care Experts – is also working to destigmatize dementia by expanding resources in the Flathead Valley while bringing a network of support for the aging population in addition to her consulting services. 

“We want to combat things like diminishing loneliness, boredom, confusion and loss of control,” Crowley said.  

Caregiver support is essential, Crowley said, and she plans to launch social programming as part of a new support system in the works called Thoughtful Engagement.  

The programming is designed not only to support the patient, but also to offer respite and ease stress for the caregiver.  

“How do we help this individual become not such a burden?” Crowley said. “How do we help you get through this storm?” 

Healthcare professionals in the Flathead are working to expand caregiver support groups, with current programming already established through ASSIST, an organization affiliated with Logan Health, which offers groups in Kalispell and Whitefish.  

Healthcare providers say the support groups offer caregivers an opportunity to debrief in a communal setting while respite helps them regain a sense of self.  

“It causes this loss of identity,” Crowley said. 

Since Frank’s role has shifted to that of his wife’s full-time caregiver, he now feels Karen Sue’s wellbeing is his responsibility and obligation, and he’s determined to do what’s best for her as she inevitably declines.  

“It’s obviously a change, but you realize what your obligations are, and you do what you’ve got to do,” Frank said. 

Frank plans to continue providing care for her as long as possible and already has the infrastructure in place at their home in case she becomes bedridden. But he worries his own health issues could someday interfere as he approaches his late 70s. He also wants to ensure that anyone who might potentially replace him has “vested interest” in her care. 

Reflecting on their well-traveled life together and their first interactions at the University of Idaho sorority house, Frank is dedicated to Karen Sue, and he has accepted reality. 

“I think you have to deal with it,” Frank said. “You just say, ‘Hey, this is who she is now and this where she’s going.’ I have to be prepared to just handle it.” 

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