Cheshire County has the highest rate of dementia in NH. What locals are doing to help.

Jun. 4—The disease started with simple mishaps. A forgotten date. A miswritten check.

But as time went on, Bertram Boyce's Alzheimer's diagnosis took more of him away. He stopped wanting to drive, to do work around the house, to hold a meaningful conversation.

"He just lost all of his drive and he lost his ability to function ...," said his wife, Sally Rinehart, of Keene. "It's a very gradual loss."

Boyce, 86, is one of thousands of residents living with dementia in Cheshire County, home to the highest rates of memory loss in people 65 and older in the state, statistics from the Healthy Aging Data Reports show.

Keene and 16 other towns in the county have rates higher than 17 percent. Throughout the rest of the state, only a handful of communities near that threshold.

Why the southwestern pocket of New Hampshire is a hub for this disease is unknown, according to several experts.

Regardless, local agencies have started taking action, shifting their focus to better accommodate the area's growing need for dementia-centered care.

"The [data] ... confirmed what we have been seeing, in terms of inquiries to the agency about what we can do to support families," said Susan Ashworth, director of community relations at Home Healthcare, Hospice and Community Services (HCS) in Keene.

Worrisome numbers

Alzheimer's is a type of dementia that causes problems with memory, cognition and behavior. Symptoms often develop slowly and worsen over time, becoming severe enough to interfere with daily tasks.

It presents itself differently in everyone. The disease has no cure, and there isn't a single factor that causes it, though age and genetics can play a role.

This makes it difficult to nail down why Cheshire County is seeing such high percentages of dementia among its residents over 65, according to Melissa Grenier, regional manager for New Hampshire within the Massachusetts and New Hampshire chapter of the Alzheimer's Association.

The 2019 data — from the Healthy Aging Data Reports, a town-by-town analysis of health factors affecting older residents in New Hampshire and select other states, compiled by the University of Massachusetts, Boston, Gerontology Institute — show the highest rate is in Westmoreland at 33.5 percent.

This could be due to it housing Maplewood Nursing Home. Beth Dugan, the professor at UMass Boston who led the research team on the Healthy Aging Data Reports, said nursing home residents are included in the rates, which could influence the statistics in a community.

Close behind are Keene, Surry, Sullivan and Roxbury, all with a rate of 28.4 percent.

Hinsdale had the lowest rate in the county, at 11.1 percent, with a majority of the remaining towns hovering between 16 and 20 percent.

Grenier hypothesized that areas with a large older demographic could see spikes in those living with dementia.

"If there was a greater number of people over 65 living there, that would explain why there is an increased number of people living there with that," she said.

But Cheshire County ranks sixth out of the state's 10 counties for the number of residents 65 and older, at just over 20 percent, according to data from the U.S. Census Bureau.

Grenier said the data are a "nice glimpse" of the county's reality, but that more research needs to be done to truly determine why it's happening.

"That's the frustrating part ...," she said. "I don't have a good answer."

Limited services

Like most rural parts of the country, Cheshire County lacks resources for those living with dementia, despite the need.

Services available include adult day programs, similar to that of a children's day care.

HCS runs the Castle Center in Keene, which helps any Monadnock Region adults in need of assistance during the day. Its main focus, though, is on those older than 60, according to Ashworth, the organization's director of community relations.

Operating five days per week, the center offers socialization, arts and crafts, meals, medication monitoring and personal care assistance through nurses and volunteers.

All but one of its 27 participants as of late May were diagnosed with dementia or Alzheimer's, Ashworth noted. Because of this, HCS added more programming just before the COVID-19 pandemic hit to better serve that population.

This includes its certification in offering a Music & Memory class, with staff and volunteers trained to create personalized playlists for attendees.

A recent three-year study from the Betty Irene Moore School of Nursing at the University of California, Davis, found that personalized music is associated with fewer distressed behaviors and a reduction in the amount of antipsychotic medication needed by nursing home residents.

In addition to music, the Castle Center also launched a more robust art program, another proven way to help people with dementia.

One of the prompts, Ashworth recalled, was to paint a moment from their past.

"At the end, we had an art show, and families could come in, and I saw a family standing in front of the painting that their family member had done, and I could tell that they were having quite a moment," she said. "They said 'We didn't think that she remembered that.' "

Though it has 27 members enrolled in total, the center has a daily census of only about 10 participants. Ashworth said the center hopes to bump that number up to 25 people per day, as it had seen prior to the pandemic.

Over in Jaffrey, the Monadnock Adult Care Center — run through Monadnock Family Services — has similar programs to help those with dementia or adults with other needs five days per week.

About three-quarters of the 41 people enrolled have been diagnosed with the disease or other cognitive issues, according to Director Christine Selmer.

"We do a lot of cognitive work," she said. "We do a lot of things that are going to make them problem solve, to think things through."

This includes puzzles, quizzes, motor-skill exercises, physical activities and meditation. Like the Castle Center, the facility also offers medication assistance and personal care help.

"One thing that we know about Alzheimer's and dementia is that structure is very important," Selmer said. "We offer a structured day where pretty much the only thing that changes is the activities we do ... and [participants will] remind us if we go out of order."

Barriers to access

Both adult day facilities cost $75 per day, with no requirement on how many days one is enrolled. The only insurances that cover the centers are Medicaid and veterans' aid, Ashworth and Selmer noted.

That is a big barrier for many, including Meghan Olmstead, 34, of Hinsdale.

She was the caregiver for her father, Joe, who died of dementia in March 2021 at 79. He had been diagnosed a few years prior, and Olmstead said later in the disease's progression he needed help dressing, bathing and eating.

She also needed to help with her mother, Judy Clement — who died nine months after her husband from pneumonia complications — and her own daughter, Arianna, who has special needs.

"It's a little weird taking care of your parents and you have nobody to take care of you," she said.

Looking back on her experience, she wishes there were more resources covered by health insurance.

"I don't know what I would've wanted," she said, "but I wish that there was something, like a respite almost, to give me a break every now and then."

Aside from offering activities and personal care, adult day programs can provide that time off for caregivers, who are typically on the clock 24/7.

That's the case for Rinehart, whose husband, Bertram Boyce, goes to the Castle Center twice a week. Rinehart, 83, has been his caregiver since he was diagnosed with Alzheimer's in 2014.

Not only does it give her time to herself, but Rinehart said it also is beneficial for Boyce.

"If he were home, he wouldn't be having that level of involvement," Rinehart said. "He would be on his own while I am tending to the business of life."

For Amy Grant of Winchester, paying private providers was the best option to meet the needs of her dad, Randy.

Amy, 32, and her mom, Marilyn, both take care of the 72-year-old, who was diagnosed with Alzheimer's about four years ago.

The disease became more severe during the pandemic. When that happened, Marilyn, 72, said his personality "flip-flopped."

He's mainly lost his verbal communication, his only attempts now are in mumbles or jumbled words. The Vietnam veteran also "swears like a sailor now," Amy noted, which he never did before his diagnosis.

Her father's attention span is also shorter, and he needs assistance with daily tasks.

The Grants have a few different people coming in throughout the week to help him. One of them is from HCS, and the other two are privately paid.

Marilyn said they've cycled through many people over the years before finding their current caregivers.

"It seemed like for a while, we were going through so many different people," she said. "They'd work for a few weeks and then they'd quit or leave."

What the family desperately needs though, Marilyn said, is overnight respite care, but it's too expensive. Now, overwhelmed by it all, the family is looking to put Randy into the N.H. Veterans Home in Tilton.

"It is becoming [too] much for my mom and I to handle," Amy said.

The need for help

There is a "huge shortage" in caregiving and home care in the Monadnock Region due to gaps in the workforce, according to Elyse Adams, site supervisor for ServiceLink, a state-funded referral hub for long-term care.

The free service can connect families with housing, health insurance, home care and various other aids. But, it all depends on what's available and affordable.

ServiceLink has local sites in each county to streamline that process, with the Monadnock Region's being N.H. Care Collaborative in Keene. The organization has 80 clients throughout Cheshire and Sullivan counties.

The lack of these caregivers in the state is likely linked to the low pay for these positions, according to Madeline Ullrich, interim executive director of the N.H. Care Collaborative.

"You can go to McDonald's and probably make more than these support workers that come into the homes and do some of the hardest work there is," she said.

And for families who make too much to qualify for Medicaid, but too little to afford these services privately, it leaves many people struggling.

"At the end of the day, when you're there 24/7 with somebody with Alzheimer's or dementia, you need breaks, otherwise you're going to break ...," Ullrich said. But "we live in a society where everyone has to work to just get by, so it makes it a vicious cycle."

To contact Home Healthcare, Hospice and Community Services or the Castle Center, call 352-2253. The Monadnock Adult Care Center can be reached at 352-2427.

For more information on Alzheimer's, dementia or the Alzheimer's Association, visit alz.org or call the association's 24/7 helpline at 800-272-3900.

To contact ServiceLink, call 1-866-826-2340. For Keene's office, dial 357-1922.

Funding for the Monadnock Region Health Reporting Lab comes from several sources, including The Sentinel and several local businesses and private donors. We continue to seek additional support. The newsroom maintains full editorial control over all content produced by the lab. Olivia Belanger can be reached at 352-1234, extension 1439, or obelanger@keenesentinel.com. Follow her on Twitter @OBelangerKS.