Spotlight on Millennial Caregivers with Nihal Satyadev

November 13, 2018

A special spotlight on millennial caregivers during National Family Caregivers Month. 

The subject of caregiving affects the lives of young people and millennials more than you may think. In fact, the Caregiving in the U.S. 2015 report, conducted by the National Alliance for Caregiving and AARP, found that 1 in 4 caregivers are Millennials.

In addition to this growing role as caregivers, young people are disrupting the fields of aging and healthcare in innovative ways. Nihal Satyadev, Co-Founder and CEO of The Youth Movement Against Alzheimer’s (YMAA), is at the forefront of youth advocacy for Alzheimer’s Disease. Since starting YMAA in 2015, it has become the nation’s widest-reaching nonprofit in providing opportunities for college and high school students to advocate, research, and provide care for those battling with the disease. We spoke with Nihal to learn more about YMAA, their respite care program, and recent legislation the organization is spearheading. 

How did you get interested in Alzheimer’s Disease issues?

My grandma was diagnosed with the disease and that’s what first got me interested in researching Alzheimer’s.  As I started researching, I learned that the care costs associated with dementia are bankrupting our healthcare system and our country.  Because of that reason, I wanted to do something more about it. That was the original inclination towards creating the nonprofit.

Tell us more about your organization, The Youth Movement Against Alzheimer’s (YMAA). 

Our organization first started out raising awareness amongst high school and college students about the impact Alzheimer’s care is going to have on healthcare. We positioned it as a social justice issue, one of the foremost amongst our generation’s time. From there, we have gone on to create our own research scholarship program, and from that, to a care model for college students providing respite care at both UCLA and USC. We are also now working on some legislation to expand on that model.

Tell us about your respite program.

The respite program initially started at UCLA, under the guidance of Dr. Zaldy S. Tan. The idea is that we train undergraduates on how to work with older adults who have early to mid-stage dementia. We partner them in a community-based setting for 3 hours, twice a week. It’s very beneficial for many parties involved. The person who has dementia is now given an opportunity to mentor a younger individual, and it helps them with more purposeful aging; the family caregiver is provided a much needed break; and for the young individual, it is an opportunity to work on and see issues of aging they would otherwise not have an opportunity to do.

What is the need for younger and Millennial caregivers?

Millennial caregivers are not as prevalent in the resources that we provide to the community. I think a lot of them do not see themselves necessarily as caregivers, and perhaps do not know where the resources are to tap into. The marketing, the outreach, the traditional ways any services for family caregivers operate in are not really branded or directed towards that population.

How do you get young people involved and engaged with Alzheimer’s Disease matters?

The main thing is positioning it as a social justice issue – a threat to our own generation’s ability to have healthcare access. About 50% of our members have the disease in their family, but the other 50% are really just working on this because they’ve realized the magnitude of the social cause. That is really what we focus on. We also generally try to meet individuals where they are. We go and help find a way to help the larger movement given their current status. What I mean by that is, for example, let’s say there is someone who is really interested in learning more about graphic design. You don’t have to be pre-med to join our organization. You could be interested in that area, but you can be working on producing graphics for your local chapter or for our team, and help advance our messaging by doing that.

Do you see this as an issue you want to be a part of long-term, as your career, now and in the future?

It’s really one of the biggest issues of our time. I definitely want to spend a majority of my career working in this field. I also want to expand my understanding more in the nuances of how we can be better helping peripheries of this issue. What I mean by that is, within this issue, there are a number of subcategories. There are efforts that need to be done to help family caregivers, there are efforts that need to be done to address social isolation, there are efforts that need to be done to revamp nursing homes, etc. We need to provide better oversight on those issues. The field of aging has so many of these subcategories. As I continue to spend more time learning from different mentors, and learning more in my career, I am really looking to expand my understanding of the variety of issues that exist across these platforms.

What are your future plans for The Youth Movement Against Alzheimer’s (YMAA)?

Our biggest effort right now is figuring out, how do we leverage young people to provide volunteer or low-cost respite care? To that regard, we’re working on essentially creating the “AmeriCorps for caregiving.” That is going to be a big focus for our organization. We are also looking to find a quickly scalable model and developing some technology around our current respite care model, so that it can be brought to other universities and other young people. Then, they can provide respite care across the country. Also, we are continuing to expand our advocacy base and to rally more young people to address this disease. Those two things go hand in hand, because once you understand the complexities of the disease, the flaws in our long-term care system, and the costs of our long-term care system, it’s only then you can understand the huge benefits to society providing respite care really has.

What else would you like to highlight about your organization, The Youth Movement Against Alzheimer’s (YMAA)?

I would like to highlight the legislation that we are working on, because it really does build on our respite care model. It creates a more institutionalized and streamlined pathway for young people to work in these fields. We are building upon our current respite care model, which is currently only 6 hours a week. This program would be 40 hours a week, it would include a stipend, and there would be grant subsidization for student loans or further graduate school upon the year of completion of the program. This program is more in-depth than our current respite program. When a family member gets 40 hours of respite care a week, they are able to reenter the workforce. There is not only the benefit of stress reduction for family caregivers, but it benefits them financially to be better prepared for the years ahead of other long-term care costs.

Also, I think the real benefit of not only the legislation, but our other work in general, is aging in place. I’m not exactly sure how to quantify that, but I do in general like to highlight efforts and get other innovators in the field to be thinking about extending aging in place. Any program, whether it is ours or from another organization, that extends aging in place by two months for 1% of the people who have Alzheimer’s today in 2018, there is a cost savings of $1 billion. We really have an ability to change the trajectory of our healthcare system if we’re able to strategize and create better ways to scale solutions for aging in place.

 Nihal Satyadev is a social entrepreneur, biomedical researcher, and a leading millennial Alzheimer’s advocate.