Youth Movement Against Alzheimer’s

In 2015, Nihal Satyadev learned that Alzheimer’s disease is one of the largest impending healthcare crisis and noticing the lack of youth advocacy, founded The Youth Movement Against Alzheimer’s (YMAA), a nonprofit organization.  YMAA is now the national leader in creating opportunities for students to advocate and provide care for those battling the disease. Nihal spent two years developing and advocating for an "Americorps for caregiving" program to help expand respite care access for family caregivers which is now listed as a priority by the California’s Alzheimer’s task force. His work has been featured on New York Times, Forbes, the Today Show, TEDMED, ABC, NBC, and several other news outlets. Nihal was recently named an Aspen Health Scholar and a 40 under 40 senior living leader and is currently a medical student at the University of Medicine and Health Sciences. He holds a Masters in Public Health.

Alzheimer’s is currently the most expensive disease in America. With insufficient research funding and no cure in sight, Alzhiemer’s threatens to bankrupt our healthcare system, economy, and families within the next decade.

To combat this looming crisis, YMAA developed YouthCare: a cost-effective solution to provide high-quality, respite care for family caregivers of persons with dementia (PWDs).  YouthCare creates four solutions in one model: 1) Address the need for a gerontological and geriatric workforce; 2) Lower rates of stress and depression for family caregivers; 3) Address the social isolation of PWDs, and; 4) Lower healthcare costs in our long-term care system. 

In one model, YouthCare provides improvements for PWDs, their caregivers, students, and the healthcare system.

Forty-four  million people worldwide are currently living with Alzheimer's disease (AD). By 2050, the cost of care for AD in the U.S. alone is projected to exceed $1.1 trillion. With 99% of AD phase 3 clinical trials ending in failure, addressing AD requires more than a single-minded focus on finding the cure alone. A solution is needed now to ensure this disease, cure or no cure, does not bankrupt our healthcare system and economy. 

In addition, the rising costs of care facilities often places the responsibility for caring for PWDs on loved ones. The caregiving demands on untrained family members, or family caregivers, takes a toll on their physical, mental, emotional, and fiscal health. Today, over 40% of family caregivers for PWDs are diagnosed with depression. Providing caregivers a break through respite care is not a luxury, it’s a critical need for the health of both the caregiver and their loved one who is a PWDs.

YMAA is raising awareness for AD through its advocacy model, which has 40 student-led chapters in 18 states, and providing respite care through its caregiving model, YouthCare, which is the focus of this application.

YouthCare is an intergenerational respite caregiving program based on TimeOut@UCLA, our pilot program that trained undergraduate student volunteers to provide companionship to older adults with mild cognitive decline in a community setting.  YouthCare, temporarily suspended due to COVID-19, provides in-home respite care and mentally stimulating activities designed to stimulate the concentration, attention, and memory of PWDs. To prepare college students to provide high-quality respite care, students receive extensive training that was developed by the UCLA Longevity Center and the USC School of Gerontology. For the duration of the program, family caregivers enjoy a rejuvenating, worry-free break while their loved ones engage in much-needed social interaction. Students and PWDs are partnered based on similar career interests and hobbies, often leading the sessions to develop into a mentor-mentee relationship. YMAA believes YouthCare has the potential to not only inspire several thousands of students to engage with older adults, but also to expand care access to thousands of families that cannot currently afford the growing costs of dementia care. 

YouthCare currently serves: (1) Adults with Alzheimer’s and/or early to mid-stage dementia; (2) Unpaid and overstressed family caregivers who are currently caring for PWDs and are above 138% of the federal poverty line; and (3) College students. The program is available to PWDs and caregivers of all ages and ethnicities. 

Based on families’ feedback about transportation challenges, YMAA adapted its pilot model in 2020 to a more user-friendly, in-home model.  YMAA continues to survey YouthCare participants at critical inflection points for qualitative data to ensure the program is relevant and impactful. A secondary evaluation is conducted in tandem for students participating in YouthCare to assess student satisfaction with efficacy of the training provided and student interest in working with older adults.  YMAA used both surveys to determine YouthCare’s meaningful impact and to inform course corrective program enhancements to ensure it remains so.

To date, the program noted a dual benefit for both the family caregivers and undergraduate students who participated:  60% of students reported their respite caregiving experience positively affected their interest in working with seniors in the future, and 73% of family caregivers reported respite care provided all the break that they needed for the week.

YouthCare elevates humanity by: 1) Addressing issues of depression, stress, isolation, and financial burden for PWDs and their caregivers; 2) Building awareness about the impact of Alzheimer’s amongst college-aged youth and driving them to action by becoming respite caregivers, become Alzheimer’s advocates, and/or inspiring them to become involved in a gerontology-related field; and 3) providing a scalable, cost-effective solution for a disease that is underfunded and has no cure. If YouthCare supported only 1% of Americans living with dementia to age at home for just two more months, the program would save the healthcare system one billion dollars.

The original model to train students to provide respite care, TimeOut@UCLA, was the brain-child of our organization’s current advisor, Dr. Zaldy Tan of UCLA Geriatrics. Nihal realized this would be a tremendous opportunity for students to get volunteer experience working directly with PWDs. Our team worked with Dr. Tan in 2015 to apply for and secure a grant that continues to fund this model today. Over the course of that period, our team was responsible for recruiting students and successfully filled all 50 slots, quarter over quarter. We also worked with UCLA Geriatrics to continually improve the training program and we published two abstracts on the model’s successes.

Realizing that this program needed to be on campuses across the country, I worked with UCLA’s social enterprise academy to develop YouthCare, a model that would allow for scalability and sustainability of our program. YouthCare was launched in 2018 in partnership with USC School of Gerontology. After a year of gathering data points, we pivoted our program to serve families directly at home and were scheduled to re-launch in March of 2020. 

When Nihal was 12, his grandmother was diagnosed with Alzheimer’s. In high school, he learned that this also meant his mother and sister were at risk. His initial supposition was that the best weapon against this disease was through an improved biological understanding. He started working in research labs. Over time, he developed an understanding and respect for the complexity of the disease. Simultaneously, he began witnessing the effects of pathological progression on a more personal level. Conversations with his grandma slowly withered into one-sided lectures followed by irregular head-nods. He was convinced of the power of research, yet felt incomplete without supplementing this academic effort with one that provided solutions of more immediacy.

It was only when he began attending national Alzheimer’s conventions did Nihal witness the true reason for a lack of progress of solutions for this disease: the demographic working on solutions was in large-part older adults. Students, en masse, were never told that this was an issue they should care about. If Nihal was to truly make an impact in a timeline that would be of benefit to his mom and sister, it had to be by bringing his generation into the realm of addressing Alzheimer’s.

Nihal’s ability to deliver on this project is based both on personal skill-set, organizational positioning, and experience in pivoting the project. His background in computer science allows him to build technology integration into YMAA’s caregiving work that allows the program to function more autonomously at scale. As a soon-to-be physician with a public health degree, Nihal bring not only his entrepreneurial experience to this project, but also his medical and public health knowledge to improve patient and caregiving outcomes. 

Over the past five years, the organization has built a national reputation as the leader in intergenerational solutions for dementia. We have established relationships with large healthcare companies such as Kaiser Permanente, UnitedHealthcare, and Cigna. In addition, YMAA’s team has the largest repository of student volunteers, spanning 18 states, who are interested in addressing this disease. Finally, the organization has a board of directors that includes national leaders in social entrepreneurship and family caregiving. 

YouthCare has been molded into its current form after having completed a three year pilot with published research, facing critique at eleven pitch competitions, and undergoing two major pivots. Nihal and his  team will be able to rapidly grow YMAA’s program given its thorough understanding of both what works and what doesn’t.

Simply put, there is no other organization better positioned to implement and scale its program, and with the support of the Elevate Prize, we will be able to do just that.

With the physical distancing needed to keep seniors, their families, and respite caregivers safe from spreading the COVID-19 virus, YMAA suspended its YouthCare program in March 2020. To continue to meet the needs of seniors and young adults during this time of isolation, we quickly developed and launched MealsTogether (www.mealstogether.org) – an intergenerational virtual dinner party where seniors and young adults are pair based on their common language, availability, and interests to share a meal via video call.  This is a unique program that comes at a time when older adults are most susceptible to emotional or physical harm due to lack of connecting to the world around them. To date, the program has successfully served over 200 seniors and young adults.

 While developed as a COVID-specific solution, YMAA is incorporating MealsTogether into its larger work.  During the pandemic, MealsTogether is keeping YMAA chapter members engaged and increasing YMAA’s database of youth who are interested in training to become respite caregivers once it is safe to resume in-person services. The rapid response to COVID reflects our team commitment to intergenerational solutions even during times of extreme uncertainty.

Fourteen miles in and six to go. Nihal had sprained both ankles while en route to completing the required twenty-mile hike for advancement in his boy scouts rank. His scoutmaster sized him up, a lanky, less-than-five-foot thirteen year old, and offered to shoulder him the last six miles. Nihal had to choose to either withstand the pain or give up. He chose to continue. Rather than forfeit his advancement, Nihal painfully walked step after step until he completed the last six miles. Alongside Nihal the entire way was his scoutmaster. 

Four years later, Nihal was responsible for leading younger scouts to build a 6’ x 8’ garden tool shed for the local senior center as his scout service project -- the last step to earning the prestigious Eagle Scout rank. Drawing on his experiences with his scoutmaster, Nihal worked one-on-one with each younger scout in his troop until they understood their role in the project. When they faltered, they worked together to make sure they created a fix. The lessons of his scoutmaster continue to define Nihal’s leadership style today. No one on the team gets left behind no matter how difficult the terrain may get.