Viewpoints

My early-onset Alzheimer’s diagnosis devastated me. I’m one of the lucky ones

Maria Shriver listen to Gov. Gavin Newsom as he gives his first State of the State address on Tuesday, Feb. 12, 2019 in the Assembly Chambers at the State Capitol in Sacramento. Newsom appointed Shriver to head the Alzheimer’s Prevention and Preparedness Task Force.
Maria Shriver listen to Gov. Gavin Newsom as he gives his first State of the State address on Tuesday, Feb. 12, 2019 in the Assembly Chambers at the State Capitol in Sacramento. Newsom appointed Shriver to head the Alzheimer’s Prevention and Preparedness Task Force. hamezcua@sacbee.com

When I was diagnosed with early-onset Alzheimer’s at the age of 63, I was devastated. My career as a lawyer was over. The fear of what the future would hold as my brain function inevitably worsened seemed overwhelming.

I now consider myself one of the lucky ones. I was diagnosed. Sadly, half of all persons with dementia don’t know they have it.

My early diagnosis means I’m able to prepare for my uncertain future, plan for my health care and caregiver needs, and tap into available support networks like those provided by the Alzheimer’s Association. Most important, my diagnosis has taught me to live out every day to the fullest, because I don’t know how long I’ll maintain this level of independence.

My path hasn’t been easy. For three years I brought my concerns about my brain health to my physician. I was repeatedly told my brain was fine. It wasn’t. I lost my dream job as a legal advocate for persons with disabilities last May for a mistake related to my decreasing cognitive function. Two weeks after I was fired, I received my diagnosis.

My story is all too common. That’s because California simply has not prioritized or put resources behind public health programs that increase the awareness and timely detection of Alzheimer’s.

Opinion

That’s why patients like me, and our advocates at the Alzheimer’s Association, are celebrating Gov. Gavin Newsom’s decision to prioritize Alzheimer’s prevention and preparedness as part of his policy agenda this year. In his State of the State address, the Governor called out the need for new Alzheimer’s research and planning. He also appointed former California First Lady Maria Shriver, an advocate for people with Alzheimer’s, to lead a new Alzheimer’s Prevention and Preparedness Task Force.

In addition to supporting the Governor’s plan, the Alzheimer’s Association is supporting Assembly Bill 388 by Assembly member Monique Limón – the comprehensive “California Healthy Brain Initiative.”

AB 388 would create California’s first statewide Alzheimer’s public awareness campaign and fund pilot projects in eight local public health departments.

Jackie Coleman-Alzheimers1.jpg
Jackie Coleman

This one-time $10 million investment – combined with the Governor’s proposed $3 million for research and the new task force – will bring desperately-needed resources to county public health departments. It will allow them develop localized solutions for patients and families, especially those who are at greatest risk, like women and people of color.

The eight pilot projects will accelerate work on the nation’s Healthy People 2020 goals related to timely diagnosis and avoidable hospitalizations. These are solutions our entire state can learn from to better prepare for the future.

Today, 650,000 Californians are living with Alzheimer’s. That number is projected to increase by 29 percent, to 840,000, by 2025. More than 2.2 million Californians are directly impacted by Alzheimer’s, either personally living with dementia or providing care and support for a loved one with the disease.

This year, California will spend $3.8 billion on Medi-Cal coverage for beneficiaries with Alzheimer’s. By 2025, the state will spend more than $5 billion.

The modest $10 million investment proposed by AB 388 can save the state billions. Millions to save billions!

Early diagnosis leads to better disease management, better patient outcomes and improved quality of life. It can also reduce the costs of caring for patients through a proactive plan for care, rather than a life filled with crisis, frequent hospital visits and unanticipated expenses.

As an Alzheimer’s patient and patient advocate, I’m grateful that Gov. Newsom has prioritized this devastating disease. I urge the legislature and governor to support AB 388.

While there is no cure for Alzheimer’s yet, a timely diagnosis gives patients like me our best fighting chance to live with dignity.

Jackie Coleman is a patient and a volunteer with the Alzheimer’s Association. She lives in Sacramento.
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