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Alzheimers

The Record-Breaking Strides of Team GAGA

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2022 Co-Presidents Emily Stangel (left) and Ashley Stangel (right) at the Westchester Walk to End Alzheimer’s

In 2024 alone, an estimated 6.9 million Americans live with Alzheimer’s. Meaning millions of families are being affected, and millions of precious memories are being lost. Battling such a horrible disease, takes not only a village, but a strong team to come together and work towards a cure.

Unfortunately, I have experienced this illness firsthand. Eight years ago, my grandfather, a prominent reproductive specialist, began to show symptoms. He was curious, and always looking for new hobbies and topics to explore. Then it progressed. He confused names, locations and as an eight-year-old, I knew something did not feel right.

When I was told he had Alzheimer’s, I was shocked. This was my Papa. The man who dedicated his career to bringing life into the world. He was indestructible, so why was his memory fading.

Through a great deal of research, my family discovered that the best thing to do when dealing with a family member with Alzheimer’s was to surround yourself with support – people who understand the disease. This is when my sister Emily, a rising sophomore at Northeastern University, got involved in the Byram Hills High School’s Growth and Awareness group for Alzheimer’s.

Max Levy, Byram Hills class of 2014, founded the Growth and Awareness Group for Alzheimer’s in 2011, more commonly known as GAGA, to introduce Byram Hills high school students to raising funds and to create awareness for the disease. Affiliated with the National Alzheimer’s Association, the club takes part in county and country-wide events.

Being a part of this club in 2021 and 2022 with my sister was extremely therapeutic and fulfilling. We were doing real work to drive the world closer to a cure. We participated in fundraisers, helped patients, and were supported by peers. As my sister’s presidency came to an end in 2023, our grandfather took a turn for the worse. After eight painful years fighting the disease, we lost Dr. John Stangel on April 24, 2023. It was surreal. He was always there for milestones – school events, birthdays, holidays – anything we saw as important, he was first in line, until he wasn’t.

Going back to the club seemed impossible for me. Being surrounded by patients who resembled my grandfather and exposed to something that had haunted our lives for eight years was tough. I felt I could not handle the task as president.

The summer before the 2023-2024 school year, the GAGA club Advisor, Ally Dellacioppa, sent me an email with condolences, and a positive message for the upcoming year. She spoke about the amazing things we were going to accomplish and the many people we could help. This burst of motivation showed me that I could not walk away and hide in my sadness. I was inspired to help others so hopefully fewer people would lose loved ones to this dreadful disease.

2023 GAGA Team Captains at The Westchester Walk to End Alzheimer’s. (L-R): Vice President Spencer Wilk, Co-President Inaara Lalani, Co-President Ashley Stangel, and Vice President Charlie Zimmerman

I began that year with a mission: my co-president, Inaara Lalani, and our vice presidents, Charlie Zimmerman and Spencer Wilk, would make history. Though the club has always been one of Byram Hills’ most successful charity-driven extracurriculars, the 2023-2024 school year was one for the books. The club had excelled in fundraising, community engagement, and had even gained official recognition.

Though GAGA has several events a year, The National Alzheimer’s Association’s,
Westchester Walk to End Alzheimer’s is the crown jewel. The GAGA club and its 80-plus members organized several bake sales in town as well as in school and accepted donations before the walk, which would take place on October 1st, 2023.

Every Alzheimer’s Association-affiliated team must fundraise before the walk. These teams can be anything from school-run clubs to families and even corporate offices. Our GAGA team did an amazing job fundraising and broke a record by raising $32,082. We also had our own tent at the walk, and individual members like Inaara and I were honored at a donor’s dinner for achieving Elite Grand Champion Status for raising over $2,500 each.

Later in January, it was announced by the Alzheimer’s Association that the Byram Hills GAGA team was the #1 highest fundraising team in all of the Hudson Valley. Coming in higher than businesses and banks. Our team was honored at the Grand Champion Dinner with major community donors for their work. Inaara and I went from being volunteers/vice presidents to leaders and instituting real change as captains – a big moment!

Esther McCarthy, the Westchester Walk Director, has always been such a valuable supporter of our team and was immensely grateful for our contribution this year.
I was extremely lucky to work very closely with Esther this year to find new ways to raise money and awareness for the walk and other opportunities. Esther noted, “Over the past two years, I’ve had the pleasure of working with Ashley as part of the GAGA team. During this time, she has gone from a dedicated team member to the Co-captain. Her creativity and energy have been invaluable.”

Though we achieved all of this by January, we felt there was more to be done. I remembered a common question we were asked, “Are you guys a GAGA team?”, referring to the elementary school sport of “GAGA.” This inspired us to come up with a new and exciting community-wide event: a GAGA Tournament. GAGA is a sport played with a dodgeball in an octagon court which is very popular with younger children.

To get this event done efficiently, we split up duties to create the most entertaining event possible! Inaara and I took on tasks such as reaching out to vendors and organizing sport supplies while Vice Presidents Charlie Zimmerman and Spencer Wilk secured the court.

We collaborated with Wampus Elementary School, which provided tables, chairs, GAGA courts, and outdoor space for the event. The Byram Hills Athletics Department also got involved by helping to secure a date and providing the necessary equipment. Mr. Saunders, the Assistant Director of Health, Physical Education, and Athletics, and Mrs. Palmer, the assistant principal of Wampus Elementary, were instrumental in the creation of the event. I am so grateful for their unconditional kindness and interest in the event.

This was a very special experience for me because Mrs. Palmer was my Kindergarten teacher. Our relationship went from that of learning colors and letters to discussing insurance and professional event planning. Mrs. Palmer commented, “I met Ashley Stangel as a bright and powerful kindergarten student twelve years ago. She was hardworking and strong-willed. Ashley was destined to accomplish what was in her head and her heart.”

I was so lucky to get to work with Mrs. Palmer again in a new role and my respect for her never ends. Mrs. Palmer said, “Fast forward a decade later, Ashley is putting into practice the good work – she is led to lead. The event was a success that brought meaningful fun for all.”

The Inaugural GAGA Tournament took place on May 4, 2024, from 1 p.m.-4 p.m. and had over 100 guests throughout the day. The students played several rounds of GAGA, and trophies were awarded to the participants. The day also included lawn games, face painting, done by freshman member Adley Aronsky, a snack bar, an ice cream truck and more. The community was very pleased by this event, and it was a hugely successful fundraiser. There was also a raffle in which donors could win a variety of summer prizes. Due to its incredible success and public demand, the GAGA Tournament will return next May.

For me, the GAGA Tournament had always been something I wanted to create, and I know that all the hard work would not only help thousands of families but would make my grandfather proud. We had a full-circle moment when founder Max Levy and his mother, Cindy Shmerler, attended the event. Both were able to see the evolution of the club and the good it brings to the community. It was even recognized by Westchester News 12. The segment featured footage of children having fun and a community coming together for the greater good.

Our club and its members did an incredible job with the event, and once again, the Alzheimer’s Association was pleased. In reference to the creation of the GAGA tournament, Esther McCarthy, the Westchester Walk Director, said “Ashley is not only incredibly reliable, but also resourceful and thoughtful in her approach. She has been instrumental in bringing in new ideas and has helped students from other high schools get involved. Her commitment to our mission is inspiring.”

Though GAGA has made some excellent strides, our hard work does not end here. As established leaders of the club, we have begun training new leaders, as they begin their high school journey, which gives all of us hope for the future.

As I reflect back on my journey with GAGA, I cannot help but feel extremely fortunate. I essentially had my own support group of loyal students trying to make a difference. We are and have always been a mosaic of experiences touched by the disease and a collection of memories that patients who are ill can no longer pass on.

Though I miss my grandfather, I know he would be incredibly proud of everything we have done. He would have loved the walks to end Alzheimer’s and would have been fascinated with the clowns and other entertainers that encourage the participants. He would have loved our GAGA tournament because it is an unusual/nontraditional sport. But overall, he would have loved our club not just for the silly name GAGA, but for our initiative and resilience, and for fighting what we believe in. GAGA is an astonishing organization that deserves to go down in history.

For all those interested in making a difference, the Westchester Walk to End Alzheimer’s will take place on Sunday, October 6th, at Westchester Community College, 75 Grasslands Road, Valhalla, New York. https://act.alz.org/

Ninth Grader Organizes Car Show Fundraiser for Alzheimer’s

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Jared Rosenberg, the car show organizer PHOTO BY ELLA ILAN

Jared Rosenberg is only 14-years-old and already making an impact.

On Saturday morning, April 28th, this Armonk ninth grader held a fundraiser called The Hypercar Circle at Fairview Country Club in Greenwich, Connecticut to raise money for the Alzheimer’s Drug Discovery Foundation.

Car enthusiasts gathered to admire exotic cars including an Aston Martin Zagato, a Ferrari 275 GTB, Lamborghinis, Porsches, McLarens, a Lotus, and one of Jared’s favorites, the Gemballa Mirage GT.

“When I was younger I went to Cars and Coffees around the country and became really interested in supercars and hypercars. I decided to combine my passion for cars with a fundraiser for Alzheimer’s,” said Jared. Jared’s grandfather passed from the disease ten years ago.

Jared started an Instagram account of car photos which grew to over 10,000 followers. Networking through social media and other car shows, Jared promoted his event, invited proud car owners to come and display their cars and secured sponsorship for his event by duPont Registry. The event raised $2,000.

“It excites me to see 14-year-olds just digging in and loving cars. They will be the caretakers for these exotic cars that will one day be vintage,” said attendee Lilly Pray of the Malcolm Pray Achievement Center in Bedford which showcases classic cars and organizes educational programs to help youth see what they can achieve in life when they put their mind to it.

Alzheimer’s affects an estimated 5.5 million people in the United States. To learn more or donate, go to www.alzdiscovery.org

Recognizing Dementia: When it’s Time to Seek Care

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Executive Director Maria Scaros (right) with resident, Virginia, during a Drama Arts Therapy session at The Greens in Greenwich, CT.

Personality changes, difficulty coordinating personal activities and juggling multiple tasks at the same time, getting lost in familiar places–the changes may be gradual when a person develops dementia. As medical professionals learn more about how dementia travels in the brain, they are better able to ascertain how that path affects someone with the disease.

Dr. James Noble
PHOTO COURTESY OF COLUMBIA UNIVERSITY
Dr. James Noble, a neurologist at New York-Presbyterian/Columbia University Medical Center’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, said that dementia “is an acquired neurological problem that causes interference with how people live their day-to-day lives.”

Within the umbrella term of dementia, he explained, “Alzheimer’s is the most common form of dementia (other forms are Lewy Body and frontotemporal dementia). In most cases of Alzheimer’s disease, people present with primarily memory loss that may be alongside other cognitive problems.”

Maria Mursch, LMSW, a Care Consultant and Director of Family Education for the Alzheimer’s Association, Hudson Valley Chapter, clarified, “When we talk about the disease, we’re talking about memory loss and about regions of the brain that control functions, judgment, personality/behavior and insight. That’s why we see a multitude of symptoms.”

Noble cited a middle ground called mild cognitive impairment that doesn’t interfere with day-to-day life. “About 50 percent of those with Alzheimer’s are unaware they have a problem, which poses a challenge for diagnoses and delays someone going to the doctor,” he said, unless a caregiver accompanies a patient during a doctor visit.

Often families face a choice between placing their loved one(s) into a home and keeping them in their own home(s) with an aide or additional caregivers. One facility that focuses solely on caring for those with dementia is The Greens At Greenwich, the first assisted living facility in Connecticut designed for people diagnosed with dementia or memory, according to The Greens Executive Director Maria Scaros.

“All our staff is trained in dementia care and engages with residents daily,” said Scaros. Each of its 31 apartments is decorated with residents’ own furniture to give a semblance of familiarity. Outside each door is a glass-enclosed box filled with pictures, tokens and other objects that can spur recognition. “Although age is the biggest single risk factor for Alzheimer’s and other forms of dementia,” Noble explained, “dementia is not part of the normal aging process.” Genetic dementia, while uncommon, presents “in families that have onset under the age of 60, affecting half the family within a generation.”

While families may have expectations and fantasies about the loved one returning to his or her former self, “they are not expected to deal with dementia alone,” Scaros maintained. The facility embraces the entire family, removing the burden of care so they can maintain their roles as spouse, daughter, son and grandchild. “We get to know their family member in the here and now and relate to them as they are in the moment.”

Mursch agreed it’s important to meet the person where he or she is mentally and emotionally. Many patients with Alzheimer’s are first misdiagnosed with depression (the blues), Noble said. “Instead, typical mood changes in Alzheimer’s can be described as ‘get up and go got up and went.’ Addressing this loss of interest in activities can be very challenging. Families may not realize that to engage a loved one in an activity, they need to be proactive.”

A familiar setting will become unfamiliar at some point, Mursch said. “When that starts to happen, we’re looking at someone who progressed in the disease,” she said. “It is important to keep the person comfortable and socializing and active, and there are ways to accommodate the person at home.”

Alzheimer’s Association (https://www.alz.org/) offers support programs and activities and a 24-hour number (1-800-272-3900) that’s answered by the local chapter during work hours and by its national headquarters after hours. Mursch added, “There may be a point when it becomes unsafe to live at home because of the physical environment (i.e. a staircase) or when the caregiver can no longer take care of the person or the situation cannot be resolved by increasing home care.”

Scaros noted The Greens’ biggest competition is home care, which may be the best solution for some. “We need to recognize, however, that when someone says, ‘I want to go home,’ it means, ‘I want to feel safe, secure, loved and engaged.’” Home becomes a feeling rather than a place.

Social activities and cognitive stimulation like hobbies can keep the brain alert. Scaros was trained as a drama therapist and ensures that creative arts therapies are an integral part of The Green’s programs. Lynn Hagerbrant feels the facility goes well beyond the standard of care in sharing, caring and loving for her own parent living there. “They have heart and soul, a caring heartbeat that starts with Maria and flows through all her staff.”

Science continues to research cures for dementia. “New treatments may not be not that far away, and trials to date have helped foresee what next steps to take,” Noble said. For information, visit www.cumc.columbia.edu/dept/taub.

Home Safety for People with Alzheimer’s

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lifeworks-picEnhancing home safety for an elderly person with Alzheimer’s can be a difficult task. Aside from taking care of installing handrails, re-arranging furniture and removing other obstacles from the home (as you might for any frail elderly), there are much less obvious hazards to someone losing their memory. An elderly person with Alzheimer’s, for example, may forget a knife is sharp or a stove is hot.

Many people who suffer from this disease will also have a tendency to wander and it doesn’t matter if 
it is day or night. An elderly person who lacks judgment, coordination and is disoriented wandering around their home in the dark of night can be heading toward 
disaster.

Vigilance is key plus these preventive measures:

  • Clear a home of tripping hazards such as electrical cords and loose rugs. Sharp corners of furniture can cause serious injuries during a fall.
  • Keep extra lighting in the house and contrasting floor colors at doorways, stairways and landings. This will make it much easier for someone to see the difference in the surface and possible changing heights and help prevent tripping and falling.
  • Install motion sensors and door alarms to help caregivers know when a elder moves around at night. Night lights in their bedroom and other traffic areas also ensure safe movement at night.
  • Lower hot water settings to avoid burns. An individual with Alzheimer’s may actual forget that the “H” on the faucet means hot or even forget what “hot” is.
  • Use child proof locks to block access to sharp or otherwise potentially hazardous appliances, objects, and substances. To protect from wandering, utilizing deadbolts or locks on gates can also be a good idea.

These are just some of things to consider when caring for a person with Alzheimer’s. In the event you feel you need assistance from a professional, there is help available.

Whether full-time, part-time or 24/7, LifeWorx’s non-medical professionals are fully screened to ensure that they have the proper skills and are trustworthy and reliable. This has led to a track record of satisfied clients who have used our Elder Care Experts in the New York Metro and Fairfield County areas. Contact us today to start reviewing candidates immediately.

Visit www.lifeworx.com or locally, please call 914 458-9933.