Southern California was the destination Friday, September 20 for the 24th annual gathering of the nation’s top researchers, clinicians, health care providers, dementia care organizations and family caregivers brought together by UCI MIND (Institute for Memory Impairments and Neurological Disorders) and the Orange County chapter of the Alzheimer’s Association and held during September’s World Alzheimer’s Month.
The overriding message of the day for the more than 500 attendees was early prevention and detection is the key. While Alzheimer’s disease is the only disease in the top 10 causes of death in the U.S. that cannot be slowed, prevented or cured, experts believe with earlier detection more support can be delivered to patients and families who encounter what has been described as “the long good-bye.”
Today, 36 million people worldwide; 5.4 million Americans; 588,000 Californians and 83,000 individuals living in Orange County are diagnosed with Alzheimer’s disease or related dementia. These numbers are expected to double or even triple over the next 15-25 years as the largest societal demographic group – the 78 million baby boomers – live longer. And it is not just the patient who is affected – more than 15 million Americans provide care to a loved one with dementia giving over 17 billion hours a year as unpaid caregivers.
“Most researchers and professionals working in the dementia field agree early prevention and detection are essential in an effort to provide effective treatments and create prevention strategies,” said Frank LaFerla, PhD. and director of UCI Mind, part of the University of California, Irvine and an internationally recognized Alzheimer’s Disease Research Center (ADRC) engaged in cutting edge interdisciplinary research to uncover the basic mechanisms of brain aging, characterize the transition from normal aging to Alzheimer's disease, develop new treatments, and identify strategies to maintain brain health.
Jim McAleer, CEO of the Alzheimer’s Association of Orange County and co-producer of the conference with UCI Mind, feels increased awareness for the disease, especially for early on-set warning signs, are critical for families to seek support and interventions.
“This disease can be a devastating diagnosis for families but what is more devastating is that many families don’t realize organizations such as the Alzheimer’s Association and others exist to help them through this journey.”
LaFerla also reiterated the need for families to understand the genetic implications of an Alzheimer’s diagnosis. The National Institute on Aging (NIA) reports a child with a parent who has a genetic mutation for Familial Alzheimer’s Disease (FAD) will have a 50 percent chance of inheriting the same genetic mutation and developing the disease.
The Alzheimer’s Association, both nationally and through its 77 chapters nationwide, provide information and education via workshops, support group help, online volunteers to help caregivers through a Care Team Calendar, vital information on new clinical trials and other programs. The Orange County chapter has a full calendar of educational events, many free to the public, including “Enhancing Dementia Care – Knowing the Person Better Than the Disease,” “Spiritual Rewards of Caring for People with Dementia,” and “The Basics: A Family Orientation.” There are also legal and financial workshops offered.
Among the sessions during the conference, McAleer outlined the status of the National Plan to Address Alzheimer’s Disease (also known as NAPA – the National Alzheimer’s Project Act) which has a federal mandate to effectively treat Alzheimer’s disease by delaying onset and slowing progression by 2025.
Signed into law in 2011 and part of the annual Congressional budget, NAPA provides up to $150 million allocated in FY2013 for funding of clinical trials, interdisciplinary approaches to therapeutic interventions and includes a national Advisory Council to update the strategic plan annually and to coordinate efforts across the federal government. While NAPA was seen as a victory, many in the Alzheimer’s community believe the budget amount is far below other federally funded disease efforts such as cancer ($5 billion), AIDS ($3 billion) and heart disease ($2 billion) at a time when Alzheimer’s disease is rapidly becoming our next epidemic.
The focus of the day-long conference was presentations by researchers and clinical experts from around the country including the Mayo Clinic, Banner Alzheimer’s Clinic in Phoenix and the University of California at San Francisco.
One of the most interesting sessions was by UCI’s Mathew Blurton-Jones, PhD. who presented findings on stem cell research. His preliminary research on mice show stem cells safely injected into the proper areas of the brain cannot prevent Alzheimer’s but may improve cognition and memory in those who do have the disease by increasing the BDNF, brain-derived neurotrophic factor, a secreted protein in the brain which acts on neurons of the central nervous system encouraging growth of new synapses.
“We aren’t yet to the stage as with skin cancer or breast cancer where if you have a mole or a lump in the breast, we can biopsy the problem and perhaps prevent the disease,” says LaFerla. “However, early detection of Alzheimer’s allows us to achieve better outcomes – in some cases we can help slow and manage the disease with a variety of interventions. The researchers and other experts here today have a common theme: by the time most dementia symptoms are observed and diagnosed we are already 10 to 20 years too late.”
LaFerla advises the same modifiable risk factors for the No. 1 killer which is heart disease, can be risk factors for developing Alzheimer’s disease, “Adopting lifestyle changes such as better nutrition, increased exercise and managing stress is something we can do today and have been proven to help.”
Sherri Snelling is an author and expert on family caregiving and was recently named to the #4 on the Top 10 list of Alzheimer’s Influencers online by Sharecare, a health and wellness expert’s site founded by Dr. Oz.