I watched my mother, Patricia Disney, battle Alzheimer’s disease for six years until she finally succumbed in 2012. The emotional, physical and financial toll her illness took on our family was immeasurable.
Alarmingly, many Californians living with Alzheimer’s are not even getting a prompt diagnosis. New data reveal that fewer than half of the individuals with Alzheimer’s disease or their caregivers are even told of the diagnosis by a physician. By contrast, 93 percent of patients with the four leading types of cancer were given this crucial information.
Even when physicians do provide a diagnosis of Alzheimer’s, they lack the knowledge and the resources to help create an effective disease management plan for patients and their families. As a state, we are not providing our health professionals with the medical knowledge to diagnose the disease early, nor are we giving them the most effective resources to support those diagnosed. The results of this can be devastating.
That’s why Sen. Ben Allen introduced Senate Bill 613 to adopt physician guidelines for Alzheimer’s disease management – and to help the 590,000 Californians living with the disease today. There is no cure or even treatment available for Alzheimer’s, so the only intervention we have to offer patients and their families is effective chronic disease management.
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The cost of developing this plan is negligible, less than $100,000. Frankly, we can’t afford not to invest in developing this plan. The Legislature passed SB 613 with unanimous, bipartisan consent. Gov. Jerry Brown owes it to all the families living with this disease to support this bill, and I urge him to sign it.
From my own experience and during my time on the board of the Alzheimer’s Association, I know that coping with the disease without an effective care management plan often means a life filled with crisis, stress, financial adversity and constant unknowns. It’s a terrible disease to suffer, and an almost unbearable hardship on the caregivers, both emotionally and financially.
Having an effective disease management plan helps patients and their families maintain quality of life, cope with symptoms and plan financially for the future, and reduces the cost of providing constant care. This helps reduce emergency hospitalizations and many other unanticipated expenses.
Susan Disney Lord is the granddaughter of Roy O. Disney and serves on the board of directors of the California Southland chapter of the Alzheimer’s Association.