“You know I have Alzheimer’s disease, don’t you?” my father would say, to anyone who would listen.
I asked him why he told perfect strangers this fact when I knew most people feared and hid their fading cognition in a society that doesn’t fully understand the disease or its impacts.
His response changed my perspective on debunking stigma associated with memory loss:
“If I don’t tell people, how do I expect to get help?” he said.
And mi querido padre was right.
We know that stigma—whether personal or societal—remains a significant barrier to receiving quality care for people living with Alzheimer’s and inhibits us from “having the talk” to prepare for the future.
As a community social worker-turned-researcher, I found dad’s bare honesty propelled me to think about the need for broad public discussion about Alzheimer’s and other diseases that affect brain health and what we can all do about it. Please note the word, “all.”
This conversation is not just for “those people” who by some subjective standard are considered to be aging, already have the diagnosis, or are caring for someone with memory loss. It is for every Californian.
After all, each and every one of us has a brain.
As California’s older adult population grows, Alzheimer’s is on pace to increase by more than 29% over the next five years, focusing on this issue now is a statewide imperative. Overcoming stigma and taking the disease head-on as my father did will make the difference.
I am honored to be of service to Gov. Gavin Newsom as a member of the new Governor’s Task Force on Alzheimer’s Prevention and Preparedness, chaired by Maria Shriver. We met for the first time just before Thanksgiving.
Forming this remarkable group of thought influencers with key expertise from throughout California is the right step forward to address the breadth and scope of the Alzheimer’s crisis.
The bar is high on what this task force has set out to accomplish.
Our goal is to increase awareness and encourage wide-ranging learning about the disease and its impact on persons living with dementia, family caregivers and neighborhoods, and to make recommendations to the governor that put California at the forefront of readiness for the rise in the number of cases of Alzheimer’s disease.
If that sounds bold, it’s because it is. There is much at stake for California’s future.
Alzheimer’s could overwhelm our state, especially long term healthcare services, families and caregiving individuals. The number of Californians age 65 and older with Alzheimer’s in 2018 was 670,000, more than in any other state. That number is expected to grow to 840,000 by 2025.
Barring a cure, the wave of people expected to succumb to this disease is troubling, given the state’s capacity to provide adequate care that doesn’t disproportionately burden families and public health care systems. Local-level action is critical, such as the first Spanish-speaking family support group I started in Los Angeles to fill a need.
This issue is larger than one task force, which is why we will convene listening sessions around the state to capture multiple perspectives. We all have a role to play, and we all can take steps now to be informed about Alzheimer’s and to debunk the stigma.
We on the Governor’s Task Force on Alzheimer’s Prevention and Preparedness hope to grab the attention of all Californians and focus it on Alzheimer’s prevention and preparedness efforts in our state.
This mind-stealing disease truly does affect us all. Let’s learn, and let’s get ready, California.
María P. Aranda is a member of the Governor’s Task Force on Alzheimer’s Prevention and Preparedness, an associate professor at the USC Suzanne Dworak-Peck School of Social Work, executive director of the USC Edward R. Roybal Institute on Aging and director of the Outreach, Recruitment and Engagement core of the USC Alzheimer’s Disease Research Center. She wrote this commentary for CalMatters, a public interest journalism venture committed to explaining how California’s Capitol works and why it matters.