Isolated older Vermonters can struggle alone Visiting nurses like Weston's Regina Downer are there to help

Editor’s note: This article first appeared in Seven Days as part of “This Old State,” the paper’s yearlong series on aging in Vermont. Rachel is a Seven Days staff writer and corps member with Report for America, a national service program that places journalists into local newsrooms.

By Rachel Hellman
© 2025 Seven Days

As Jim’s eyesight declined, so did his quality of life. The 84-year-old had long lived alone at the end of a dirt road in Weston, a small town in the southern Green Mountains. He spent his adult life skiing and picking up odd jobs, living mostly off-grid. He never married or had kids.

When he stopped driving two years ago, he had fewer opportunities to see people. He depended on a neighbor to give him a weekly ride to buy groceries. He struggled to prepare food for himself.

“I was a total handyman,” said Jim, a tall, gruff man who asked Seven Days not to share his last name. “But after a while, I couldn’t even change my own light bulb.”

His rural home overflowed with items, mostly junk that he’d collected over the years, which caused him to frequently lose his glasses and cellphone. His porch bulged with broken tables, discarded clothing and old tools. His washing machine no longer worked, so he couldn’t launder his clothing and sheets. Rats wandered freely inside his home.

Jim’s estate lawyer, who checked in on him regularly, raised concern last spring with Regina Downer, a community nurse responsible for six mountain towns in Windsor County. Downer, a health care worker and advocate, started visiting Jim in an effort to gain his trust. He was resistant to the help, though.

“I was living in a rather rough spot,” he acknowledged later. “But that did not bother me at all.”

Downer persisted. She was unwilling to enter Jim’s home because it was so difficult to navigate, so they talked in her car or at a local diner where she took him for breakfast.

Downer helped Jim get cataract surgery to improve his eyesight and to fill out an advance directive; the diner’s owner signed off as a witness. But the nurse worried about how Jim would fare in the winter. He would be dependent on his neighbor to plow him out. Further, Jim heated his home with wood. The previous winter, a chimney fire burned a hole in his roof that had yet to be fixed.

“He was going to be alone, and I was going to worry about him,” Downer said. “I was afraid his whole house would [catch] fire.”

It’s common for seniors who live alone to reach a point where they can no longer adequately care for themselves. In fact, the phenomenon is so prevalent that those working in the eldercare field have a term for it: self-neglect. It leads to more calls to adult protective services agencies nationwide than any form of elder abuse.

Unless you have access to a large amount of money,
you could be forgotten, and then, in turn, you could
give up on yourself.

Regina Downer

As rates of isolation increase among older Americans, the trend is especially worrisome in Vermont, which has the third-oldest population in the nation and the largest percentage of older people living in rural areas, according to data from the U.S. Census Bureau.

Moreover, Vermonters, particularly among older generations, have long nurtured an ethos of self-reliance and Yankee stoicism, leading many seniors to refuse help and insist on going it alone — even when it is not in their interest. The situation can be a matter of life or death. People who neglect themselves have higher rates of illness and death, emergency room visits, and hospitalizations. They’re more likely to suffer from other forms of elder abuse, as well.

Vermont is also one of the most lax states in the nation when it comes to regulating, funding and managing care for adults living in potentially perilous conditions. Unlike practices in most other states, Vermont’s Adult Protective Services program does not handle cases of self-neglect. Instead, reports about these seniors are directed to area aging agencies, which are social service organizations. The heads of these agencies and staff members of Vermont Adult Protective Services say the agencies aren’t adequately funded for that work.

Vermont officials have long been aware of these shortcomings. A report to the state legislature prepared two years ago by the Self-Neglect Working Group, which had been established as part of the 2020 Older Vermonters Act, spells it out clearly: “There appears to be substantial risk that self-neglecting individuals could ‘fall through the cracks’ of the current system; that is, their needs may remain unnoticed and/or unmet.”

The group penned six recommendations for developing more robust training, screening tools, oversight and resources for this population. And yet, no action has been taken, and the number of self-neglect cases directed to each area aging agency is either holding steady or increasing. Those working in the field say they’re already overwhelmed, and the silver tsunami representing the state’s aging population has yet to touch shore.

“I worry about my clients who feel like giving up,” said Downer, who visits dozens of older Vermonters weekly. She is one of a handful of community nurses in Vermont. “Unless you have access to a large amount of money, you could be forgotten, and then, in turn, you could give up on yourself.”

Old problem

Ahen people can no longer care for themselves, the signs can be varied.

“It’s not just the hoarding, disheveled person who is self-neglecting,” Mark Boutwell said. He’s the executive director of Senior Solutions, the area aging agency for southeastern Vermont located in Springfield.

The tells can be quite subtle. Boutwell recalled a client with mild dementia who had a neat home but was driving, putting her and others at risk. The agency considered this self-neglect.

Other cases are more extreme. Dena Wilkie, a community care coordinator for the Town of Sharon, recently started working with a 77-year-old diabetic man who lives alone in a rural cabin with no running water. He makes do with only a space heater, microwave and television.

His neighbor, Mary Ayer, called Wilkie when the man had a diabetic “spell” in the middle of winter. Ayer said the man could hardly walk but did not immediately seek help.

“He could’ve died, and no one would’ve known anything about it,” Ayer said. “Everyone in this neighborhood is keeping an eye on him, but he doesn’t have an advocate.”

States approach these seniors very differently. While most adult protective services take on cases of self-neglect, the mandates of the organizations vary widely. In Florida, for instance, if a situation would cause a “prudent person” to believe that somebody is unable to care for themselves, that’s considered self-neglect.

Vermont is more libertarian. The 2020 Older Vermonters Act defines self-neglect narrowly — as the result of diminished capacity related to medical or behavioral issues. So people who choose not to meet some of their own basic needs are considered to be making a personal decision.

Joe Nusbaum, director of the Division of Licensing and Protection for the Department of Disabilities, Aging and Independent Living, thinks Vermont’s focus on self-determination is largely cultural. “There’s an assumption that this is how Vermonters want to live and a desire to see that protected,” he said.

But it’s more complicated. Most Vermonters want the vulnerable adults they know to be cared for, Nusbaum said. “When people are confronted with a family member or neighbor struggling, they want someone to intervene,” he said.

The number of these isolated seniors is substantial. The volume of referrals for self-neglect to Vermont Adult Protective Services has hovered around 350 in the past three years, despite a continuous effort by APS to have people report these cases to the area agencies on aging instead.

Further, many cases are not reported. By nature, people who are unable to care for themselves are often reluctant to reach out for services. A study by the National Institutes of Health shows that for every case of elder abuse or neglect reported to adult protective services nationwide, as many as five are not.

In extreme cases, these situations can prove fatal. Seven Days reviewed death certificates issued in Vermont between 2021 and 2023 and found 21 seniors for whom “self-neglect” or “Diogenes syndrome” — a medical disorder characterized by extreme self-neglect — was listed as a cause of death.

We’re definitely not as attuned to our neighbors
and community members as past generations.

Angela Smith-Dieng

Elizabeth Bundock, chief medical examiner for the state, said the true scope of the problem could be larger. In order for something to be listed as a cause of death, she explained, there has to be anatomical evidence that it led to the individual’s death — a high bar. Such determinations, she said, have much to do with the judgment of individual medical examiners.

Experts say the prevalence of this problem likely reflects Vermont’s growing senior population. The number of people over age 65 has nearly doubled since 2000, and one in three people will be over 60 by 2030. Diminishing networks of community care paired with growing rates of loneliness are also factors.

“We’re definitely not as attuned to our neighbors and community members as past generations,” said Angela Smith-Dieng, division director for adult services at the Department of Disabilities, Aging and Independent Living. With more churches shuttering and fewer children caring for aging parents, the civic and social ties for elder Vermonters are fraying. There’s been a notable increase in hospital abandonments — the act of deserting an elderly person at a hospital waiting or emergency room — in recent years, according to Nusbaum.

“I am finding all of these adult children just shocked that they have to take care of their parents,” Wilkie said.

Experts say the Covid-19 pandemic worsened the situation for most seniors. A 2020 national poll by the University of Michigan found that loneliness and social isolation increased markedly among older adults during lockdown, in some cases exacerbating underlying anxiety or depression.

Vermont is not well positioned to aid this growing population of lonely seniors. In a rural state with limited public transportation options, providing services and support for older adults is challenging. A workforce shortage of service providers aggravates the problem.

So, too, does the state’s housing crisis: Aging homeowners are having a hard time finding housing that suits their changing needs, whether it’s an affordable apartment without stairs or a spot in an assisted-living community. That means more older Vermonters are isolated in homes that may be dangerous for them. The result is a growing senior population at great risk of isolation and with few avenues for intervention.

Each winter, Downer, the community nurse in Weston, said she worries anew: “I think to myself: Who is going to be isolated by this particular storm? Who has a generator? Who has an electric recliner and will get stuck if we lose power?”

The Vermont way

Vermont’s five area aging agencies take on cases of self-neglect; the biggest one, serving Chittenden County, is Age Well. And yet, noted Smith-Dieng, they operate without standardized statewide criteria or training to identify and treat self-neglect. That means the type of care that a struggling senior receives depends significantly on the approach and capacity of the agency with jurisdiction where they live and the case manager to whom they are assigned. Community nurses, who work in conjunction with area aging agencies, say there are notable differences between them.

The theory is: Outsourcing self-neglect cases to regional nonprofits better suits older Vermonters because the groups are actually based in their communities.

“They can really connect someone struggling with different resources, and often self-neglect comes with a distrust of services,” Smith-Dieng said.

And yet, the area aging agencies receive virtually no extra funding from the Department of Disabilities, Aging and Independent Living to deal with cases of self-neglect. The $53,000 each area agency receives yearly from DAIL “isn’t even enough to cover a full-time employee,” Nusbaum said. “It’s not enough to handle what we’re looking at in the state of Vermont.”

The 2022 self-neglect report declared the limited funding to be “insufficient to support the [area aging agencies’] actual costs in responding to self-neglect.”

Boutwell, director of Senior Solutions, said an increase in self-neglect cases — without extra money from the state — is one of the reasons the organization went about 40 percent over its budget for handling self-neglect cases in 2023.

“As an agency director, that’s a challenge for me,” Boutwell said. “I want to make sure people get the services they need, but I can’t run the agency into a deficit.”

No agencies in Vermont serve people under 60 who fail to care for themselves.

“There is definitely a gap in the system,” said Samantha Davis, the co-director of case management for the Central Vermont Council on Aging. “It’s difficult to have someone who has potentially been self-neglecting for 20-plus years only come to us when they are 60 years old.”

Boutwell said his agency is scrambling because of changes to Vermont’s Choices for Care, a Medicaid-funded, long-term care program, which legislators have overhauled. Vermonters who were receiving care through home health agencies are now receiving care from an area aging agency instead. Boutwell said he’s getting funding from the state to help pay for the extra work but is still trying to hire people to manage the additional 160 clients. That’s on top of the 250 clients the agency currently is already managing.

“In a sense, these cases are competing,” he said.

The challenge of recruiting and retaining adequate staff for Vermont’s rapidly aging population has affected the ability of agencies such as Boutwell’s to do their jobs. Organizations that are often called upon to provide services — home care nurses or mental health counselors — are also having trouble finding workers. Even when an area aging agency can assist a challenged senior, resources to get them out of their dangerous situation might not be available.

Wilkie, the community nurse in Sharon, said she once spent months making a case to Medicaid for at-home care for an elderly woman who was living alone with severe dementia. The woman often forgot to take her meds and had mice in her home. She refused to leave. Although Wilkie eventually prevailed, the woman never got the care because of staffing shortages at the local home health agency.

“Eventually I had to send the woman to the hospital,” an exasperated Wilkie said, “and she’ll probably never come back home.”

Trusted connections

Isolation and poor health crept up on 87-year-old Carolyn Mullett, another patient of Downer’s. She had always been proudly self-sufficient and kept her quaint Weston home neat and orderly. She listened to Vermont Public each morning and played the organ for a local church on Sundays.

“I’m pretty satisfied being by myself,” Mullett told Seven Days.

But when the pandemic hit, Mullett developed isolating habits and saw few people outside of her occasional trips to the Post Office.

Mullett also decided to remove coverage for medications from her Medicare. She didn’t have any prescriptions at the time and figured cutting back was a smart way to save money. But about a year ago, Mullett’s back started bothering her. She had trouble cleaning her house, changing sheets and even gardening, which she loved. Mullett didn’t trust doctors and resisted making a medical appointment.

A neighbor took notice and reached out to Downer. Like Jim, Mullett was resistant at first to any help and wary of changing her lifestyle. But over months, Downer gained Mullett’s trust enough to take her to a doctor. Mullett was quickly diagnosed with a pinched nerve and received shots to treat the pain.

Since then, Mullett’s life has dramatically improved. She’s able to move about her house and complete most chores. With Downer’s encouragement, she’s made a more concerted effort to get in touch with friends and stay involved with her community.

“I’m a little bit more receptive now that Regina [Downer] is in the picture,” Mullett told Seven Days. During a recent visit by Downer, Mullett added her upcoming doctor’s appointments to a cat-themed calendar.

Beyond managing Mullett’s health care, Downer has been an advocate in negotiating her Medicare coverage. She got Mullett back on a plan that covers prescriptions. Otherwise, Mullett would’ve faced additional charges for the rest of her life. It took hours of work on Downer’s part.

“It’s been very helpful for me to have you,” Mullett told Downer with a smile.

The best treatment for self-neglect, studies show, requires building trusted relationships. A survey conducted by the authors of the 2022 study found that “repeated attempts to engage, or check-ins by professionals” was an effective strategy in Vermont.

Care workers say that a foot in the door is often all that it takes to start a conversation. Case managers with the area aging agencies and community nurses — if a town has one — are able to build trust over time. That’s critically important for older Vermonters who are often wary of the health care system or too proud to accept help.

Some outright refuse. Community nurses and case managers tell of seniors who have repeatedly slammed the door on them.

“In those circumstances, you just have to eventually give up,” Davis said.

When it works, care workers connect older Vermonters with the resources that they need. Some benefit from Meals on Wheels deliveries, while others might be connected with mental health counselors. A handful require more extensive intervention, such as a deep clean of their home or even a move to an assisted living facility.

“Some clients have families that are able to help support them,” said Davis of Community Health in Rutland, “but others don’t, and I think a lot of times that’s what we run up against.”

Frustrated by the lack of resources available for clients, Davis and her colleagues decided to set up a fund this past summer to provide for the immediate needs of self-neglecting older Vermonters. So far, they’ve got $5,000.

“It’s really disheartening as a case manager to have worked with someone for many years and have nothing to offer them when they’re ready,” Davis said.

Most counties don’t have anyone like Downing, so area agencies have to triage cases, prioritizing care for individuals who are in the most dangerous situations.

“We’re asking ourselves: What happens if we don’t get back to them in two or three weeks?” Boutwell said. Currently, Senior Solutions has about 10 cases waiting for attention. Downer said a client of hers waiting for a home health aide was told that 80 people were in line ahead of them.

For an older Vermonter living alone with dementia, or a senior who has just worked up the courage to ask for help, such a wait list can be a huge deterrent, noted Wilkie, the Sharon community nurse.

“It’s not that these people don’t have needs that couldn’t be helped,” Wilkie said. “It’s just that in this line of people, they’re not ranked as high, which is a really horrible way to look at it.”

‘Vermont is gray’

The number of Vermonters coping with loneliness, isolation and self-neglect will increase in the coming years. For social workers and care providers already working at full capacity, the risk of system failure is real.

“The color of Vermont is gray,” Downer said. “It’s too late to prepare. We need to deal with this in an aggressive way because it’s not going to go away anytime soon.”

Some towns and nonprofits are experimenting with relatively simple ways to keep older residents connected. The Middlebury Police Department has started making daily phone calls to at-risk seniors as part of Project Good Morning. Police Chief Jason Covey said he was inspired to launch the service after hearing about similar programs in New Hampshire. “We want to catch these people before they fall through the cracks,” he said.

Downer advocates expanding and fortifying the grassroots community nurse network she is a part of, which is currently scraping by on donations and some municipal funding.

 

Last year, Vermont legislators were asked
to expand the community nurse model, but
the bill never went anywhere.

Last year, Vermont legislators were asked to expand the community nurse model, but the bill never went anywhere. Wilkie argues that community nurses can get to people at the outskirts of society, a major asset in a rural state.

“We have the time to build trust,” she said. “This big agency is not going to be the solution.”

Nusbaum concurs. But he worries that attempts to fill the gap in Vermont might result in an “unfunded mandate for some entity, like APS, to take on self-neglect services.”

The states with effective interventions have designated programs and robust resources, Nusbaum said, but Vermont lacks those.

“Vermont is often very innovative in its thinking and willingness to try new things,” Nusbaum said. “I don’t think we’ve seen national solutions to this. I’d love to see Vermont give it a go.”

Key assist

In the early weeks of fall — with the first overnight freeze fast approaching — Downer convinced Jim, the man in Weston, to look at Equinox Terrace, an assisted living facility in Manchester that had a rare opening. Jim could afford a room but was resistant to moving.

Begrudgingly, he toured the facility. He even joined a drumming exercise class.

Much to Downer’s surprise, Jim quickly agreed to move. In early October, a neighbor helped him lug a few boxes of possessions to his new home.

“I think Regina and the other people were amazed at how fast I accepted,” Jim said a month later, while enjoying a lunch of pork chops and mashed potatoes at Equinox Terrace. Jim’s new friend Peter had joined him for lunch. Jim was freshly shaved, Downer noted. He looked better.

Jim agreed but was quick to point out that he did not like certain aspects of life in the facility. “The loss of freedom and all of that stuff,” Jim explained, sipping on cranberry juice. “But such is life.”

He understood what was at stake, remarking on his life before the move. “Little by little, it just got worse and worse,” Jim said. “I was going downhill fast.”

Downer said later that Jim’s move probably saved his life.

She didn’t have much time to dwell on the success, though. She had people to meet with that afternoon. And the next day, she said, she would drive a client to a doctor’s appointment. After that, if she had the time, Downer planned to check in on a man who had seemed especially depressed recently. And then maybe drop off some forms at the post office.

“Oh,” she remembered, suddenly. A board meeting of the My Community Nurse Project was coming up, too. On the agenda was to figure out how to raise enough money for her salary.