Every Walk to End Alzheimer’s organized by the Alzheimer’s Association begins in a cheerful garden filled with flowers of many colors representing participants’ connection to the disease.
In the Promise Garden Ceremony that kicks off the walk, participants are asked to hold their flowers high — orange flowers represent people who support the cause of a world without Alzheimer’s, blue flowers are for people who are living with a diagnosis of the disease, yellow flowers are for families and caregivers and purple flowers are for people who have lost loved ones.
The last couple years have marked a turning point in research and treatment for Alzheimer’s Disease, and, with new FDA-approved drugs that are able to slow the devastating progression of cognitive decline that is the hallmark of the disease, there’s now a new flower that walk organizers are hoping to add to the Promise Garden — a white flower, representing the elusive first survivor of Alzheimer’s Disease.
“I’m confident we will one day add this flower,” said Peconic Landing Director of Health Services Jennifer Drofenik at the first-ever North Fork Walk to End Alzheimer’s, held at Peconic Landing in Greenport the morning of Aug. 6, as a volunteer held high one white flower. “Wouldn’t that be an incredible addition to our garden.”
“This is personal to me, because of the work I do,” said Ms. Drofenik, who is also a volunteer with the Alzheimer’s Association, pointing out that more than six million U.S. residents are living with a diagnosis of Alzheimer’s or another form of dementia, supported by 11 million unpaid family caregivers.
As baby boomers age, the number of Alzheimer’s cases in the U.S. is projected to increase to nearly 13 million by the year 2050, draining the resources of families and the health care system. It’s a quiet public health crisis, and one that many families don’t talk about.
“Alzheimer’s is destroying our families, their finances and their futures,” said Ms. Drofenik.
Alzheimer’s Disease is the most prevalent form of dementia, a gradual decline in memory and cognitive function that is linked to physical changes in the brain that often occur later in life but are not a normal part of aging.
For decades since the disease was first identified by Dr. Alois Alzheimer in 1906, there were no FDA-approved treatments and little scientific consensus about its root cause, which is now believed to be the buildup of protein fragments, known as plaques and tangles, that block the space between nerve cells.
Two new breakthrough treatments, aducanumab and lecanemab, approved in 2021 and 2023, respectively, have been shown to remove plaques early on in the progression of the disease.
But as these treatments are approved, many families living with Alzheimer’s have already been caring for loved ones for years, if not decades.
“There are more than 61,000 Long Islanders living with the disease today,” said Nancy Chandler, a Southold resident and volunteer with the Alzheimer’s Association who spearheaded the North Fork walk after participating in a Walk to End Alzheimer’s in Yaphank since 2016 (the Yaphank walk will be held on Saturday, Sept. 23). “We’re working for them, for their families, their caregivers and their friends.”
Ms. Chandler said she knew little about Alzheimer’s before her mother received the diagnosis in 2013, when she and her sister became her mother’s caregivers.
“We mourned the loss of someone who was still alive,” she said. “Every day, a piece of mom disappeared, until she was no longer able to read, walk, speak or carry for herself in any way. Caregiving was very tough, as many of you know.”
“Navigating the complexities of Mom’s care was overwhelming, and it was one of the most challenging things we’d ever done,” she added. “But it also inspired me to become a volunteer. I wanted to help other families and caregivers facing this journey, and channel my sadness into something positive.”
The inaugural North Fork walk brought more than 100 people to Peconic Landing, a Continuing Care Retirement Community on the Long Island Sound in Greenport. It raised more than $25,000 to support Alzheimer’s care, support and research programs.
“Alzheimer’s isn’t going to back down, and neither are we,” said Judy Wichter, Associate Director of Development for the Alzheimer’s Association Long Island Chapter, at the Promise Garden ceremony, thanking Peconic Landing for making the walk possible.
Amongst the sea of people holding high their Promise Garden flowers was Catherine Kent, a retired teacher and former Riverhead Town Councilwoman who is now running for the Suffolk County Legislature seat held by Al Krupski. Ms. Kent was quietly holding up a purple flower for her father, who received an ‘early onset’ Alzheimer’s diagnosis at the age of 60.
“This is a very personal thing for me,” she said. “It’s very hard on the caretakers. I saw the toll it took on my mother. I’m grateful for the work the Alzheimer’s Association did.”
“Take each day as it comes,” she advised families of people living with Alzheimer’s. “Take comfort in the little things. When I would visit my father, he didn’t remember my name, but I knew he knew me.”
The Alzheimer’s Association holds several East End caregiver support groups, including one led by Ms. Chandler at the East Hampton Library at 11 a.m. on the second Tuesday of the month, at the Montauk Library at 2 p.m. on the last Tuesday of the month and at Peconic Bay Medical Center in Riverhead at noon on the third Wednesday of the month, and numerous educational sessions throughout Long Island. For more information, visit alz.org/longisland.
Peconic Landing has also been hosting a Brain Health and Alzheimer’s Awareness Education Series in partnership with the Alzheimer’s Association this summer.
The final presentation of the series, led by Ms. Drofenik, is “Effective Communication Strategies (For Caregivers),” which will be held on Wednesday, Sept. 6 at 3 p.m.
The session will help caregivers understand how patterns of communication change for people who have Alzheimer’s, and how to implement strategies to connect and communicate with them at each stage of the disease. It’s designed to help caregivers learn to decode messages their loved ones convey with their attitude, tone of voice, facial expressions and body language, and is designed help both people connect in meaningful ways.
The series follows closely behind the launch of Peconic Landing’s new respite care program in its memory support neighborhood, Harbor South. The program offers short-term stays for people living with cognitive impairments, while their loved ones and caregivers are relieved from their responsibilities to travel, work, or rest. Respite guests will have private accommodations, artistic and educational opportunities, and social events and outings.
Admission to the Brain Health and Alzheimer’s Awareness series is free, but registration is required by calling the Alzheimer’s Association at 1.800.272.3900. For more information on respite care at Peconic Landing, visit www.peconiclanding.org/respite or contact Laura Rutkowski, Case Manager, LPN at 631.593.8323.