Recognize, Assist, Include, Support, Engage (S. 1028/H.R. 3759)

Usha Tewari, NLC Orlando

Many of you may or may not realize, “Alzheimer’s caregivers ride the world’s biggest, fastest, scariest, emotional roller coaster everyday” (Bob De Marco, recognized expert in Alzheimer’s community).

I hope this series will give you a unique perspective about Alzheimer’s disease, and recognize its potent implications on our fragile health care system. At some point in our lives whether we choose to realize it or not, we will confront this challenge head on without any training. I did not realize the economic and political magnitude of this task until my mother’s diagnosis. I work full-time in the government sector, have several community engagement priorities including New Leaders Council (NLC), and whatever energy I have left, I attempt to navigate this system searching for resources and support for my mom and me. The past year has been a frustrating yet eye opening experience. I consider myself savvy, but recently discovered there are far too many people out there who do not know how to further proceed in getting the much needed support they require.

On a macro level, the caregiving stats are of concern and alarming. We are over 15 million caregivers in the United States who support and comfort our parents, spouses, and children. Whether preparing meals, managing medications, or assisting with bathing and dressing, we provide unpaid care for people with Alzheimer’s and dementia who depend on us around the clock. From a personal perspective this not only takes an emotional toll, but physical and financial as well. Yet from a national level, caregivers themselves incurred $10.9 billion in additional health costs last year due to stress, depression and additional healthcare issues. These stats are mind blowing and just the beginning of a potential healthcare implosion.

The RAISE Family Caregivers Act was a successful bi-partisan effort passed earlier this year and signed into law. Introduced in Congress by Senators Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.) and Representatives Gregg Harper (R-Miss.) and Kathy Castor (D-Fla.).

Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act will give the Health and Human Services (HHS) eighteen months to create a plan to support caregivers who care for a family member with an illness, disability or “functional limitation.”

Caregivers such as myself are grateful for the pro-active grassroots movement that make this a successful initiative; however, our fight does not end here, and time is quickly ticking away. It is necessary that we remain vocal and cognizant of this issue and continue to remind private and public sector stakeholders, healthcare providers, and elected officials of this healthcare priority and reality.

Money may not grow on trees, but our passion to advocate stems from our hearts. I hope at some point in your lives you take the initiative to understand how diseases such as Alzheimer’s have a profound individual impact that has slowly trickled down from the national level. This eye opening experience has motivated me to educate my family, friends, and community of this challenge.

This past weekend I was in Washington DC participating in my first half-marathon (13.1 miles) benefiting the Alzheimer’s Society. This challenge at first terrified me, but I realized by doing this I am educating my circle about this detrimental disease and gross impact on our society.

I hope your thirst for advocacy will encourage you to go beyond your comfort zone. Please, remember whether you are currently a caregiver or not, keep RAISE Family Caregivers Act on your radar. At some point in your life, you will appreciate this bi-partisan effort.

My goal is to educate and bring awareness to this issue over the course of several months because there are too many misconceptions floating around. Next, I plan to bring to your attention, Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (S.2076/H.R. 4256). As of early March, this initiative has reached eleven (11) co-sponsors in the Senate and 57 co-sponsors in the House. Momentum is quickly building because costs associated with Alzheimer’s exceed $259 billion a year, and we need to take note of this financial burden on our society.

We must continue to promote early detection and avoidable hospitalizations. Will you chose to join us and help?

Usha is a first generation Indian-American and native Floridian born in Orlando . She has over ten years experience working for the United States Senate, and the Orange County Property Appraiser’s office. ​​Usha is a caregiver for her mother, and remains active in her community serving as Marketing Chair for the 2018 Walk to End Alzheimer’s in Orlando, and Co-Director for the Orlando Chapter, New Leaders Council (NLC).