An estimated 5.3 million Americans – including 590,000 Californians – are living with Alzheimer’s disease. That’s 5.3 million Americans who may not remember their loved ones’ birthdays or names, or even how to dress themselves. Coping with Alzheimer’s is devastating, but what if you and your family didn’t even know you had it?
The Alzheimer’s Association’s 2015 report found that only 45 percent of those with Alzheimer’s or their caregivers say they were told the diagnosis, compared to more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate).
Bruce and Cindy Kaldor of Sacramento know firsthand the importance of early diagnosis. In 2006, the couple watched as Cindy’s father’s once brilliant mind slowly deteriorated. Seven years later, Cindy began noticing small memory changes of her own. She started having trouble spelling, her math skills were gone and her handwriting was deteriorating. By the end of that year, doctors at UC Davis had confirmed a diagnosis of early onset Alzheimer’s.
People with Alzheimer’s disease have the right to know the truth about their diagnosis. Denying or delaying a diagnosis may limit a patient’s ability to seek care and treatment early in their disease, and their ability to participate in important decisions about care or personal finances.
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Studies show that among the reasons doctors fail to disclose a diagnosis of Alzheimer’s are insufficient time and resources to provide support to patients and caregivers, including a discussion of treatment options and support services. Communicating a frightening or upsetting diagnosis can be difficult, but it can be done in a sensitive and supportive way that avoids unnecessary distress.
As our Alzheimer’s epidemic continues to intensify, increased funding for research must become a national priority. Congress must increase the research budget by $300 million in 2015-16.
From 2000 to 2013, Alzheimer’s deaths increased by 71 percent, while deaths from other major diseases including breast cancer, heart disease, HIV/AIDS and stroke decreased. Significant federal investment for Alzheimer’s research is needed now to realize the same prevention, early detection and treatment progress seen in these other major diseases and to save millions of lives. Without major medical breakthroughs, the number of Alzheimer’s cases in the U.S. is expected to nearly triple by 2050.
Equally imperative is Congress’ support of the HOPE for Alzheimer’s Act. This legislation, a critical step to improve outcomes for patients and their caregivers, would increase access to information about care and support in the physician’s office following a diagnosis and have it covered by Medicare. In addition, the bill would require the diagnosis and care plan to be documented in the patient’s medical record, which is imperative for care coordination and management.
Unlike any other disease, Alzheimer’s is a triple threat with soaring prevalence, lack of effective treatment and enormous costs. It’s time we have a serious and meaningful conversation about the personal, emotional and economic toll of this devastating disease.
William H. Fisher is chief executive officer of the Northern California and Northern Nevada chapter of the Alzheimer’s Association.