YouthCare (in-home)

The USC Leonard Davis School of Gerontology

The UCLA Longevity Center

The UCLA Social Enterprise Academy

UsAgainstAlzheimer’s

Uber Health

Cedars Sinai

Kaiser Permanente

Los Angeles Department of Aging

Los Angeles Caregiver Resource Center

Home Instead

Alzheimer’s Los Angeles

Alzheimer’s Association - California Southland Chapter

First African Methodist Episcopal Church

Actively Caring Through Sharing

My grandmother asked me, “Rohin, ella vunnavu nana?” which simply means, “How are you, Rohin?” in my mother tongue, Telugu. This is a common enough question, except my name isn't Rohin.

My name is Nihal Satyadev, and I am the CEO & Co-Founder of The Youth Movement Against Alzheimer’s (YMAA). We are an army of young people dedicated to helping caregivers for those with dementia. Ten years ago, my grandmother, once a prominent ophthalmologist, began to lose her memory. The roles of mother and children were reversed — as my family now had to feed her, bathe her, organize her medications, manage her finances, and be her constant companion.

My family is not alone. There are currently 5.5 million Americans diagnosed with dementia, and for each of which there is another unpaid family caregiver diagnosed with depression. These numbers will double in the next 12 years. This growth in rates of Alzheimer’s will bankrupt our healthcare system.

I heard about these statistics 4 years ago as a public policy intern for Alzheimer’s Association. I was shocked to learn that my peers, who were championing issues of gun reform, student hunger, and income inequality, did not realize that this one disease could make healthcare access impossible for millions of Americans. More shockingly, there was no national organization to mobilize students to address this issue.

Just months later, YMAA was born. My mission was to rally students to source solutions to address the public health crisis of our generation. In a few years, we grew to actively engaging over 500 students, each with their own connection to the disease. Charlene, a high school senior in East LA, serves as the caregiver for her single mom with early-onset Alzheimer’s. With no other organization serving as a community of young people affected by this disease, we are a family away from family for students like Charlene.

This past October, I was in a closed-door discussion with leaders from the World Bank, Alzheimer’s Drug Discovery Fund, and several other international leaders working on addressing this disease. YMAA was the only organization working on caregiving innovation. Until there is a cure, we are the best hope for families affected by this disease.

Healthcare access

Rates of mental illness

Resilient communities

Central LA

East LA

Will be county-wide eventually

A: Last year, we were granted an honorable mention award from LA2050 (thank you!) which allowed us to operate a full year of at-venue YouthCare. We learned that our model should transition to serve families in their homes to reach more family caregivers. In order to implement this program in homes, the most critical factors our team will need to address are liability concerns, effectively training students to provide in-home respite care, generating more family caregiver referrals, and executing a strategy for sustaining the program beyond the time-period of this grant.

Our insurance policy will be restructured to expand coverage into the homes of PWDs. We will license both in-person and online training from UCLA Health. The training will be far more robust than the current training as to ensure that students are able to manage care situations that are unique to in-home settings. In order to generate more family caregiver referrals, YMAA will implement a marketing campaign that will involve signage in various locations across service planning areas (SPAs) four and six, radio advertisements, and flyers distributed at faith-based institutions. This marketing campaign will be critical in generating referrals outside of the healthcare system and dementia care network. To ensure, our program’s long-term sustainability we will work with administration at USC to establish course credit through USC Gero 591, which requires students to participate in a real-world practicum and work with older adults.

Finally, we will transport students using Uber Health and develop materials to inform family caregivers of stress management techniques, the importance of self-care, and resources in their area to seek mental health support, such as caregiver support groups.

B: The proposed program will maintain a target population of unpaid family caregivers in SPAs four and six of LA County who are currently caring for a PWD and cannot afford respite care services. This population is in high need of our service and is proximally located to USC, the source of our students volunteers.

C: April 2019: Restructure insurance policy and begin discussions about student training modules. May 2019: Develop materials for marketing campaign. June 2019: Start marketing campaign in SPAs 4 and 6 (continuous until the end of the timeline). July 2019: Finalize training licensing agreements. August 2019: Market the program to students and train them. August 2019 - May 2020: Operate and monitor the program. June 2020: Evaluate the program findings. July 2020: Consider small improvements to program. August 2020: Market the program to students and train them. August 2020 - May 2021: Operate and monitor the program. June 2021: Evaluate and report the final program findings.

D: Our model aims to lower rates of depression in Angelenos, create a robust healthcare workforce, and at scale, can save hundreds of millions of dollars for our city’s healthcare system.

Youthcare’s success will be defined by its ability to reach its ultimate health objective by first reaching its immediate and intermediate objectives.

Health Objective: To decrease the prevalence of depression in caregivers of PWDs in Los Angeles who use this program by 10 percent within 9 months of program implementation.

Intermediate/Behavioral Objectives:

To increase efforts to seek mental health services by family caregivers of PWDs in Los Angeles who use this program by 15 percent within 6 months of program implementation.

To increase use of stress management strategies by family caregivers of PWDs in Los Angeles who use this program by 15 percent within 6 months of program implementation.

Immediate Objectives:

To decrease internalized stigma about using mental health services in family caregivers of PWDs in Los Angeles who use this program by 25 percent within 3 months of program implementation.

To increase awareness of mental health services in the community for family caregivers of PWDs in Los Angeles who use this program by 95 percent within 2 months of program implementation.

The primary evaluation of the program’s outcomes, for family caregivers, will be conducted through a quasi-experimental study design. A non-experimental group of family caregivers will be formed by family caregivers that expressed interest in YouthCare, but did not go on to get matched with a student. These individuals will be paid a small recruitment reward for filling out a survey. The experimental group will be required to answer the survey in order to participate in YouthCare. The survey will include a patient health questionnaire mood scale (PHQ-9) to evaluate symptoms of depression. The survey will further contain questions regarding the use of stress management techniques, use of mental health services, socioeconomic status, race, gender, and qualitative questions to gather more information on the lifestyle of the caregiver. This survey will effectively measure immediate, intermediate, behavioral, and health objectives and will be administered before family caregivers start YouthCare, at the end of the first semester (4 months), and at the end of the second semester (9 months). The counterfactual group will be given the survey at the same time points.

A secondary evaluation will be conducted in tandem for students participating in YouthCare, using a single group pretest-posttest design. This secondary evaluation will assess student satisfaction with YouthCare and student interest in working with older adults. This survey will include qualitative questions to assess the efficacy of the training module and will allow students to reflect on highly positive or negative moments during the course of their volunteering. All data will be coded into SPSS and evaluated using nonparametric statistical tests, given the low n-value.

Reduced rates of caregiver stress and depression mean that these caregivers should be able to keep their PWDs at home longer, offsetting costs of expensive assisted living facilities and nursing homes. Eventually, our team plans to work with insurance specialists to gather a research team that can effectively project cost savings of our program on Medicaid and MediCal. If our program reaches 17% of Angelenos who have dementia and allows them to stay at home for an additional two months, we will save the local healthcare system over 1 billion dollars.