Longtime advocate to speak at Hanover walk for Alzheimer’s disease

The Upper Valley Walk to End Alzheimer's drew 430 participants to the Hanover High School parking lot where they departed on either a three quarter or two mile loop through Hanover, N.H., on Saturday, Sept. 30, 2023. The Vermont and Massachusetts - New Hampshire chapters of the Alzheimers Association raised $135,000 with the walk. (Valley News - James M. Patterson)

The Upper Valley Walk to End Alzheimer's drew 430 participants to the Hanover High School parking lot where they departed on either a three quarter or two mile loop through Hanover, N.H., on Saturday, Sept. 30, 2023. The Vermont and Massachusetts - New Hampshire chapters of the Alzheimers Association raised $135,000 with the walk. (Valley News - James M. Patterson) James M. Patterson

By LUKAS DUNFORD

Valley News Correspondent

Published: 09-30-2024 6:31 PM

HANOVER — Leah Farley had been a clinical social worker for 20 years, helping the vulnerable and voiceless, when four years ago she suddenly found herself in that same position.

She was diagnosed with younger-onset Alzheimer’s disease. The uncommon condition affects people under 65. Farley, a Hopkinton, N.H., resident, is now 60.

“I always fight for the little guy, and then I was like, I’m the little guy,” she said.

Since the diagnosis, she has been advocating both regionally and nationally through the Alzheimer’s Association, finding purpose in creating reforms for the unheard.

Farley will be a speaker at the Upper Valley Walk to End Alzheimer’s hosted by the Alzheimer’s Association on Saturday, Oct. 5, at 10 a.m. at Hanover High School.

“It is one of about 600 walks just like this that are going on in communities large and small all across the country in this period,” said Kathy Harvard, a board member of the Alzheimer’s Association, Massachusetts and New Hampshire chapter.

The goal of the walk, which has been going on for more than 10 years in the Upper Valley, is not just to raise money, but also to “raise awareness about the issue of Alzheimer’s and related dementia” and “connect together and to see that we’re making a difference,” said Harvard, who lives in Hanover.

Harvard’s husband, Andy, was diagnosed with younger-onset Alzheimer’s before his death at age 69 in 2019. Kathy continues with this work because “this is what’s going to make a difference,” she said.

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Although there are currently no cures, research has produced treatments and medications that “slow down the progression of this disease,” Harvard said. The Alzheimer’s Association, founded in 1980, funds not only clinical research, but also seeks to determine “what are the best models to use for caregiving and how we support caregivers,” Harvard said.

The Association also provides a “comprehensive” range of support services, including 24/7 telephone helplines, referral paths and educational materials — all at no cost, Harvard said.

The disease can bring an “enormous difficulty or burden” to families who are caregiving and also to the health care system, as more people are diagnosed with the disease, Harvard said.

Farley has her own fundraising team for this weekend’s walk: “Leah’s Village,” which includes her husband, son, daughter, friends, coworkers and supporters.

She sees her daughter and grandchildren, who live in Thetford often. She receives her treatment at Dartmouth Hitchcock Medical Center and also spends most fall weekends at Mascoma Lake campground in Lebanon.

Farley has been an advocate since she was 10 years old, when she started organizing fundraisers for muscular dystrophy. She earned her bachelor’s degree in social work at University of New Hampshire and earned a master’s in clinical social work at Fordham University in New York City.

She was drawn to social work because it allowed her to channel her difficult upbringing into helping others. She worked in the field for years, from being a substance abuse counselor in New York’s school system to starting a nonprofit focused on women who were starting over after incarceration, substance use treatment and domestic violence.

“I used all my energy to try to be the good,” she said, “and be part of the good and not let it bring me down.”

Eventually, she opened her own clinic in Londonderry, N.H., accepting Medicaid and offering pro bono work. “It was my passion,” she said.

But in 2019, Farley started having problems remembering words and getting lost on the way to work. She could tell there was something going on beyond aging. So, she went to her doctor, who told her: “It’s probably stress, you’ve got a lot going on. But, I’ll give you a referral to a neurologist.”

The neurologist was “very condescending” to her, she said, and told her, “You’re getting older you know, these are things that happen.”

Though Farley still believed there was more going on, she “liked having a good brain,” so she accepted the neurologist’s dismissal.

As time went on, however, Farley’s symptoms worsened. “I started having disagreements with my colleagues and my employees because I would tell them they could do things but forget that I told them,” she said.

She went to a new neurologist, who couldn’t understand why a 56-year-old would want invasive testing. But Farley felt dissonance between what the doctors were telling her and what she understood was happening. “Knowing you’re not okay and not knowing why, it makes you feel crazy,” she said.

She continued to advocate for the invasive tests, to which the neurologist conceded. And they came back positive for Alzheimer’s.

Farley said she was grateful to be able to afford the additional testing — and to have the sense of authority to push for herself. “I got a diagnosis because I advocated for myself, because I had insurance, because I could pay the co-pays, etc. But there’s a lot of people who don’t get that because they don’t feel they have power, they don’t have money, they don’t have access,” Farley said.

Following her diagnosis, the neurologist told her that all she could do is “get your affairs in order, manage your stress,” which made Farley feel completely powerless. She said, “So, this is it? I was blown away. I was so angry.”

Due to her condition, Farley said she has lost “my business, my nonprofit, some of my friends, you know, not because they’re mean or bad, but that they just didn’t understand.” Because of this disruption and lack of understanding, Farley said that Alzheimer’s is “the loneliest disease.”

Farley’s marriage also was initially strained. For almost a year, she and her husband, Steven Farley, who has been an engineer for over 40 years, bickered often. His mindset initially made Leah feel unheard and misunderstood.

“It really felt like she was pushing me away,” Steven said in a phone interview.

However, the relationship improved after Steven began to listen. Through that, Steven was able to help his wife “trust that I would be there no matter what,” he said.

Alzheimer’s can be misunderstood because the disease is often associated with its latest stages — very elderly people with very little cognitive ability. Leah Farley challenges this: “The disease starts somewhere and ends somewhere, but there’s all these stages in between.”

As an advocate by training and persuasion, Farley connected with the Alzheimer’s Association — a nonprofit that supports research, awareness, and care for those affected by the disease — soon after her diagnosis. Farley has since been appointed to the National Early-Stage Advisory Group and her regional Early-Stage Advisory Group, which operates in Massachusetts and New Hampshire.

She described the Alzheimer’s Association as one of the most important sources of support for living with younger-onset. “They’re amazing people,” she said.

Her role with the Alzheimer’s Association takes her across the country for speaking engagements, interviews and political action. On Capitol Hill, she’s helped lobby for Medicare coverage of new medication. And in the New Hampshire State House, Farley has testified for a bill that would make it so that patients didn’t have to drive across the Massachusetts border to make a telehealth call to Mass General Hospital, where she previously received treatment.

In November, Farley plans to go to Chicago to talk to primary care providers about “what it’s like to be on the other side of the desk,” to spread awareness about the difficulty and confusion one can feel when affected by Alzheimer’s — both before and after a diagnosis.

Through her advocacy, Farley has regained a sense of meaning. “I found some power,” she said, “and I found a way to continue to give back and have purpose.”

In her personal life, Farley has been “frontloading” her vacations, so far having gone to Costa Rica and Ireland with her family. They plan to go on an Alaskan cruise next. She also has become more aware of her day-to-day health. She has begun to spend more time in the garden.

”There is a lot of life left to live,” Farley said.

Lukas Dunford can be reached at lukasdunf@gmail.com.