Heartache and hope fuel this month’s ‘Walk to end Alzheimer’s’

After decades of frustrating setbacks, research into Alzheimer’s disease is entering a new era of cautious optimism. At the same time, the number of those living with the disease is beginning to spike because people are living longer. The CDC projects that the number of Americans living with Alzheimer’s — now nearly 7 million — will double by 2060.

That combination of promise and urgency underpins the Alzheimer’s Association’s annual North Fork Walk to End Alzheimer’s. The event, set for Saturday, Sept. 27 at Peconic Landing in Greenport, has become a powerful focal point for those living with the disease, families and caregivers who shoulder its daily realities and those who just want to lend their support.

“Doing these walks brings people together,” said Southold Town Councilwoman Anne Smith, a longtime advocate with first-hand experience caring for a family member living with dementia. “For that moment, it’s ‘I’m not alone, coping with this,’” Smith said. “During that walk time, you are not alone.”

She said that it’s devastating to watch a loved one’s decline.

“Without being too dramatic, it’s almost like grieving,” she said. “The person is still here, and it’s not like you don’t love them anymore. It’s just that they’re changing and you are working so hard, which is why these resources, these hotlines, are so important. People call them in the middle of the night and say, ‘I don’t know what to do. Help me!’

“People think it’s just about finding the right medication or the right doctor, but it’s not.”

By Thursday, this year’s North Fork walk had already raised nearly $90,000 for research and resources to support caregivers and those living with Alzheimer’s. Click here to register, donate or get more details about the event.

‘Gut punch’

When Southold resident Nancy Chandler’s mother first showed signs of dementia, the realization came late. By the time Chandler and her family recognized what was happening, her mother’s decline was well underway.

Along with her sister, Chandler stepped into the role of caregiver for six years, guiding their mother through the cruel unraveling of memory and independence that marks the disease. Her mother passed away in 2017, and recently Chandler found herself back on the same path, this time with her husband, John.

“I’m on this journey a second time,” Chandler said in an interview this week.

With her husband, the first warning signs were subtle.

“He’s always been really good with technology, but all of a sudden he started having trouble with his phone and with his computer. We’d have a conversation, and then he wouldn’t remember it. And I’d be like, ‘How come you’re not paying attention to what I’m saying?’” she recalled.

After years volunteering with the Alzheimer’s Association, Chandler could sense the difference between normal forgetfulness and something deeper.

“I was like ‘this isn’t normal.’ As we get older, our cognitive abilities change, but when it starts to interfere with your ability to function on a day-to-day, that’s when it’s time to get checked.”

Her husband agreed to undergo testing — something many seniors resist — and the results confirmed their fears.

An amyloid PET scan revealed “lots of amyloid on his brain,” the hallmark of Alzheimer’s.

“So that gut punch [came] last June. ‘I can’t believe we’re going down this path again,’” Chandler recalled thinking. “The only good thing is that I feel a little more equipped as a caregiver.”

‘No roadmap’

For now, her husband is in what she described as an early phase.

“If you met him, you probably wouldn’t even know anything was wrong.” But she said the road ahead weighs on him. “It’s harder for him because he’s aware of what he has, and sees some of the decline in those skills that you’ve had your whole life, that you take for granted … it’s really, really upsetting. It’s scary.”

Chandler has also seen the impact of the disease as a support group facilitator for caregivers in Mattituck and East Hampton.

“Some of the heartbreak the folks go through is just unbelievable,” she said.

The unpredictability of the disease is one of its sharpest thorns. Some people manage for a decade with slow decline, while others will lose their independence within two years.

“Everybody progresses at a different rate,” she said. “There isn’t sort of this roadmap where this happens at this point in time, then this happens. That’s a really hard thing for people. Everybody wants to know, ‘What’s next?’ And there is no clear answer.”

‘Isolation’

Chandler is blunt about the dangers of isolation that caregivers face.

“It’s a really big deal. It happens in a couple ways. Friends and family … are uncomfortable, and as the person progresses, you know, they think, ‘I don’t know what to say. I don’t know what to do.’ So friends and family can pull away. That happens a lot.”

At the same time, caregivers themselves become consumed with daily responsibilities.

“They’re so mentally and physically exhausted, the idea of getting up and going [to a support group] is just too much work, or they can’t leave the person home alone, so they can’t go out,” she said. “The isolation becomes very real.”

While caring for her mother, Chandler remembers once breaking down unexpectedly at a routine doctor’s visit.

“I just burst out bawling, crying in her office, and she’s like, ‘You’re depressed.’ And I’m like, ‘No, I’m just stressed.’ And she’s like, ‘You’re depressed, and we need to address this.’”

For some families, she said, keeping a loved one at home becomes impossible.

“The decision is heartbreaking … You feel this guilt of ‘I gave up on her,'” she said. “But sometimes it’s not safe, and you have to make that decision.”

For Chandler and her sister, who have been fundraising for a decade, this year’s walk has taken on new meaning.

“This is the first year where now we’re also walking for my husband, who will be there. He’s going to hold up the blue flower.”

Chandler said the flowers at the annual Promise Garden ceremony ahead of the walk are powerful symbols. A blue flower represents someone living with dementia, while a yellow flower is for a caregiver. Purple flowers are worn by those who have lost someone to the disease.

Orange flowers are for people who “want to help and fight and make this disease go away,” Chandler said.

“One by one, we ask people to raise their flower, and when you look around, you know exactly why the person next to you is there — and it’s very moving. I’ve been doing it for 10 years, and I cry every time.”

‘Better networks’

Research into the causes of the disease is evolving. For years, the leading hypothesis — that sticky amyloid plaques in the brain drive the disease — led to repeated failures in drug trials. But in the last two years, a new generation of anti-amyloid drugs, including lecanemab and donanemab, has shown an ability to modestly slow the progression of cognitive decline. While not cures and not without risks, these therapies mark the first real progress in changing the course of the disease. Last month, Yale neuroscientist Amy Arnsten said that Alzheimer’s research has reached a “tipping point.”

Researchers are also looking beyond amyloid. Studies now target “tau tangles,” chronic brain inflammation and vascular health — incorporating a broader view of what drives dementia. Advances in imaging and spinal fluid analysis — and promising new blood tests — are making it possible to detect Alzheimer’s years before symptoms emerge.

The value of lifestyle-focused prevention strategies is also an emerging focus for researchers. Large trials have suggested that maintaining cardiovascular health, exercising, eating a balanced diet and staying socially and mentally active can significantly lower risk. Experts increasingly see Alzheimer’s as a complex condition shaped by genetic, vascular and lifestyle factors. While a cure remains elusive, advocates believe that these combined advances can reframe the future of care and treatment of dementia.

Smith said the advances in Alzheimer’s research and care underscore the need on the North Fork for stronger everyday networks — intergenerational spaces, a robust senior center and simple, old school neighborliness.

“We used to knock on doors and say, ‘Hey, I see you got three newspapers out here. Are you okay?’” she said. “We can create better networks of connection, whether it’s through going on Alzheimer’s walk or helping people get places. It’s why our senior center is so important … it’s really important that people can get on a bus and go be with other people.”