ALZHEIMER’S AWARENESS Help&Hope
Our Mission:
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Help&Hope
Help & Hope: Getting support and engaged in the early stages
Alzheimer’s Association, California Central Chapter Santa Barbara
1528 Chapala Street, Suite 204 Santa Barbara, CA 93101 805.892.4259
Santa Maria
Year Established
120 East Jones Street, Suite 113 Santa Maria, CA 93454 805.636.6432
The Alzheimer’s Association, California Central Chapter was established in 1984.
Ventura County
We provide a full range of free and vital services to more than 30,000 families through offices in Santa Barbara, Ventura, and San Luis Obispo Counties. Many of those services are available in Spanish.
145 Hodencamp Road, Suite 205 Thousand Oaks, CA 91360 805.494.5200 2 November 2016 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
In this issue, you’ll have the opportunity to hear from people with the disease and their family members concerning their lives with Alzheimer’s disease. This is a chance to hear from real people telling you the truth about their journey, from the first sign of a problem through diagnosis and early adjustment. Some of it will sound very, very familiar to those of you with concerns. Some of it will be new for you – new information, new ideas, and new ways of looking at things. The purpose of Help and Hope is to focus on families as one unit and to provide information about support services as well as key educational topics that will help to strengthen the family bond as you face Alzheimer’s disease. The goal of this insert is to offer information
San Luis Obispo County
3232 S. Higuera Street, Suite 101A San Luis Obispo, CA 93401 805.547.3830
alz.org/cacentral
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Alzheimer’s Association, California Central Chapter
@AlzCentral
Alzheimer’s Association, California Central Chapter
Service Area
Mission To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Volunteer Opportunities We need you! We offer a wide range of volunteer opportunities, from helping with a special event to serving as a support group facilitator. If you are interested in volunteering, please contact your local Alzheimer’s Association office to learn more about how you can utilize your talents to make a difference in the fight to end Alzheimer’s.
Giving Opportunities Sponsor a special project or major event: You or your company
BOARD OF DIRECTORS Danna McGrew, Chair Robert Short, Vice Chair Simone Lagomarsino, Treasurer Michael Hellman, Secretary Sharon Bick
and an understanding of the disease, provide engagement opportunities and empower those affected by the disease. Please enjoy this publication, refer to it often, or pass it on to a neighbor or loved one in need. Feel free to call us with questions. We are here to help. Sincerely, Donna Beal, MPH, MCHES Vice President, Program Services & Advocacy Alzheimer’s Association California Central Chapter www.alz.org/cacentral 24 Hour Hotline: 1-800-272-3900
or foundation can help launch or grow special projects with the power to transform the future of Alzheimer’s. You can also be a part of highprofile events such as the Walk to End Alzheimer’s, The Longest Day, Blondes vs. Brunettes, the Alzheimer’s Association Professional Education Conference, and the Alzheimer’s Women’s Initiative Luncheon ‘Your Brain Matters’. Join the Alois Society: Membership in the prestigious Alois Society, with an annual gift of $1,000 or more, provides the opportunity to be at the forefront in the fight against the disease and helps us move closer to a world without Alzheimer’s Join the Aspire Society: With a gift of $10,000 or more, you can be a part of our global society of major donors, supporting a wide range of strategically important initiatives to advance the effort to end Alzheimer’s disease.
greatest potential to change the future of Alzheimer’s disease. Every gift moves us closer to our vision of a world without Alzheimer’s. Thank you for considering how you can make the greatest difference. To learn more, please contact Mitchel Sloan, Vice President of Development & Communications at 805.892.4259, x102 or at msloan@alz.org.
Programs Our vital and free program services include: o Education for Caregivers and Professionals o Information and Referrals o Support Groups o Family Care Consultations o Community Awareness Our Association is the largest private or nonprofit funder of Alzheimer research in the world, providing more than $315 million to more than 2,200 scientific investigations since our inception.
Join the Founders Society: The Founders Society honors those who have remembered the Association in their estate plans. For many supporters, estate gifts offer the
For more information, please contact Donna Beal, Vice President of Program Services & Advocacy at 805.892.4259, x107 or at dbeal@alz. org.
Jeff Branco Leigh Cashman Katina Etsell Jessica Foster Kiersten Hess Robert Hirsch Kenneth Kosik, M.D.
Richard Mann Dana Newquist Lol Sorenson Teresa Valko William Vasquez Sharon Kennedy, Emeritus Charlie Zimmer, Emeritus
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Alzheimer’s: Find the information you need and make it work for your loved one Find the information you need and make it work for your loved one Jennifer Best/ Contributing Writer
4 November 2016 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
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ith family obligations to juggle, work to complete, bills to pay, meals to prepare and a home to maintain, I set about the task of finding resources for dementia support on the Central Coast. There was no family member in immediate need of help, no dear friend with Alzheimer’s awaiting my findings, no added stress of watching a loved one decline and taking on their medical care, transportation and billing. Six hours of phone calls, combing of internet search results and one week later, I was still hunting. “Sometimes it’s not that there are not resources out there, it’s an issue of how do people find out? How are those resources marketed? How does the information get to the people who need it,” said Megan DeBrito, program assistant/volunteer coordinator for Central Coast Commission for Senior Citizens-Area Agency on Aging Long-Term Care Ombudsman. Too often, those resources are found only after patients and their families are in the care system. Sharing information with an older population that isn’t necessarily internet savvy adds a certain degree of difficulty and illustrates the need for
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approached by people on the hunt for Alzheimer’s information and care. Instead, she said, the first stop for local information should the Alzheimer’s Association at www.alz.org/cacentral/. “The Alzheimer’s Association is key because they provide special training to deal with various types of situations, support groups, and patient and caregiver education,” DeBrito said. Meanwhile, the segment of the American population with dementia is growing as the Baby Boom generation builds into a silver tsunami of citizens 65 and older, the age range at greatest risk of Alzheimer’s Disease. One in three seniors dies with dementia, which encompasses a variety of brain diseases including vascular dementia, dementia with Lewy bodies, mixed dementia, Parkinson’s younger disease and more. The most prevalent, Alzheimer’s people with Disease, represents 60 to 80 percent of all dementia technology acumen to diagnoses affecting more than 5.4 million Americans step up for their seniors. today. “At one of the support The Alzheimer’s Association projects that number group meetings, one spouse will grow to 13.8 million by 2050. mentioned that she takes her Start with your family doctor spouse to an adult day center. Finding care options begins with the family Another lady in the group said she’d never heard about it. Why are they not doctor, said Melissa Lovinger Owen, executive director of Home Instead Senior Care. hearing about these services? It’s a matter of one “Usually someone has an annual check up, person helping another through word of mouth prescriptions running out; there’s a laundry list of more often than not at this point,” DeBrito said. excuses to get someone to the doctor,” Owen said. The prospect of dealing with a loved one in the Patients should express their concern to their throes of dementia is an incredible stressor that regular doctor who can provide a simple, in-office can, in itself, lead to health problems for potential assessment. caregivers. Throw in demands of everyday life, While patient confidentiality precludes medical a seemingly hidden network of care options and services, and an apparent stigma around the array of professionals from sharing patient information, increasingly common brain diseases associated with they often welcome input from family members, she said. Medical powers of attorney also opens the door dementia for an entirely maddening experience. to discussion between physicians and caregivers. “It’s certainly a problem,” said Sansum Clinic “You can explain the situation. Rarely is a doctor representative Jill Fonte. going to be forthcoming with information they have, First stop for information but they want your input. It helps them do their DeBrito said that while her agency’s primary job,” Owen said. directive is to provide oversight and patientFor loved ones reluctant to seek out help, advocacy at skilled-nursing and long-termcaregivers have options which may help spur care facilities, the ombudsman’s office is often
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that story, and explain that you don’t want that to happen in your family,� Owen said. Ultimately, patient housing may become an issue. “The decisions are different for every family. If everyone is invested in the person staying at home, there are lots of ways to make that happen,� Owen said. Home Instead Senior Care, for example, provides an array of services for seniors ranging from running errands a few times a day to providing respite for caregivers, taking clients on outings, and providing 24/7 care. “If it’s a situation where they’re violent or difficult to control, they become a wandering risk or having someone there 24/7 isn’t enough, it might be time to look at a residential program, but we’ve also had people who are very difficult to help who are able to stay at home. But it takes a really special kind of caregiver who can love the person through the dementia and not take it personally,� Owen said. Lots of options Care centers may range from assisted living in facilities with private apartments and shared dining spaces to more home-like settings in neighborhoods or skilled nursing facilities. Owen recommends searching for “placement specialists� who can help match clients with housing options based on medical needs, personality and income. Fonte also recommended attending senior expos offered by cities and agencies throughout the Central Coast. The expos typically include information on organizations as well as businesses that provide a vast array of services specifically for seniors. “They’re truly incredible sources of information. Sure, some of the booths are selling services, but any other senior resource that’s available in our communities goes there,� Fonte said. The Area Agency on Aging-Central Coast Commission for Senior Citizens also provides a wealth of information on myriad senior issue, programs and concerns on its website: www. centralcoastseniors.org
Lee Central Coast Newspapers / Alzheimers Awareness Guide / November 2016
forward assessment and treatment. “If you can get involved, accompany Dad to the doctor. Sometimes it also works to follow up on an appointment by calling the office, explaining who you are and asking if there are any referrals you can help Dad follow up on,� Owen said. Should follow up be required, the patient will be referred to a neurologist. What’s next? “Next steps depend upon the stage, or even if your concerns are related to dementia. It could be something medical going on that they can correct with medication, and there are medical treatments for some kinds of dementia as well,� Owen said. She also recommends talking to aging loved ones now, not later, about their wishes and creating legal documents in order to ensure those wishes are honored. Aging with Dignity, a national nonprofit, has designed a simple, inexpensive, advance directive document, legal in 42 states including California, to address Five Wishes. Those include: medical power of attorney which assigns a health care agent in case a patient become unable, for any reason, to speak for herself; living will defining which types of life support treatment the patient prefers in varying situations; issue of comfort, such as pain management; personal treatment such as preferences in endof-life housing; and a final section dealing with how the loved one wants to be remembered. “It’s really helpful to talk about this when your parents are healthy. It’s their chance to express what they want to have happen,� Owen said. The document is available at www. agingwithdignity.org/five-wishes/ about-five-wishes, for individuals, families, children and adolescents and is available in 28 languages. Explain your concerns For family members unwilling to talk about such issues, Owen suggested explaining your concern. “You probably know someone who hasn’t told anyone anything about what should happen if they’re not able to make their own decision. Start with
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Medicare to provide coverage for critical care and support services for individuals living with Alzheimer’s disease
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Alzheimer’s Association applauds CMS for implementation of services consistent with the HOPE for Alzheimer’s Act
he Alzheimer’s Association is celebrating an important milestone for the millions of Americans living with Alzheimer’s disease. For the first time people living with Alzheimer’s disease will have access to care planning with a medical professional. The Centers for Medicare & Medicaid Services (CMS) has finalized its decision to pay for cognitive and functional assessments and care planning for patients with Alzheimer’s disease and other cognitive impairments. The decision, first
announced in July as a proposal, comes following rapidly growing bipartisan support in Congress for the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 857, H.R. 1559). CMS has now made it easier for physicians to provide critical care and support services for persons living with Alzheimer’s disease. For too long there has been a critical gap in care and support, with individuals unable to receive necessary diagnosis and care planning support from care providers. Following a
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6 November 2016 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
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diagnosis, care planning is crucial to improving outcomes and maintaining quality of life for the diagnosed and their caregivers, as well as controlling costs and planning appropriately for the future. “This final decision by CMS means individuals living with Alzheimer’s disease will finally have access to critical care and support services that can improve quality-of-life for the individual, their family and caregivers,” said Harry Johns, Alzheimer’s Association President and CEO. “Now that care planning sessions will be available to them, individuals living with the disease will have access to much-needed information on treatments and services.” More than 5 million Americans are living with the disease today, and that number could rise as high as 16 million by 2050. What’s more, over 85 percent of people with Alzheimer’s and other dementias have one or more other chronic conditions, such as diabetes or heart disease. Care planning is critical for coordinating care and managing chronic conditions. “Thousands of our families have reached out to us over the past several months to tell us how essential this service is for those contending with Alzheimer’s disease. Now that CMS is increasing access to cognitive assessment and care planning sessions, individuals and their medical professionals can develop a plan to better manage these conditions,” said Robert Egge, Alzheimer’s Association Chief Public Policy Officer. “Proper
care planning results in fewer hospitalizations, fewer emergency room visits and better management of medication — all of which improves the quality of life for both patients and caregivers, and helps manage overall care costs.” Support for this decision wouldn’t have been possible without the hard work of the HOPE for Alzheimer’s Act lead sponsors Senator Debbie Stabenow (D-MI) in the Senate and Representative Chris Smith (R-NJ) in the House. Alzheimer’s is the most expensive disease in America at a cost of $236 billion annually, and our public policy decisions should reflect that reality. It is also the only leading cause of death in the U.S. that cannot be prevented, cured or even slowed. Alzheimer’s Association grassroots advocates and staff have held thousands of congressional meetings to secure support for the HOPE for Alzheimer’s Act since the bill’s introduction, and have worked tirelessly to secure support for the benefit at CMS. Following CMS’s announcement in July, the Alzheimer’s Association submitted comments to provide our expertise on the ways this new service could best be implemented to positively impact the lives of those living with Alzheimer’s disease. The Alzheimer’s Association will continue to engage CMS to ensure the service’s maximum impact for people living with the disease and their caregivers. For more information on Alzheimer’s disease, visit alz.org.
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CARING FOR ALZHEIMER’S AND THE ELDERLY IS HARD. DON’T NEGLECT TAKING CARE OF YOURSELF AS WELL.
Our program is designed to help enrich the lives of the elderly while offering caregivers a respite from the demanding responsibilities of daily caregiving. It is ideal for folks who need some support caring for a family member, especially if they are working. Be it a day, several days a week or as long as a month, we’ll take good care of your loved one so you can take care of yourself. From experience we know all caregivers could use a little break now and then and our program is here for you.
All our elderly care services and amenities are included in this program. Transportation to and from Friendship House 24-hour supervision Medication management Social and therapeutic activities Shower/grooming/incontinence assistance Full service beauty salon and barber shop
FRIENDSHIP HOUSE since 1978
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Nutritional meals and snacks Health monitoring by Registered Nurse specializing in Alzheimer’s and dementia care Flexible Hours Monday-Friday 7am -7pm Saturday 9am-5pm
Alzheimer’s and Dementia Care 880 Friendship Lane Solvang, CA 93464 805.688.8748
Lee Central Coast Newspapers / Alzheimers Awareness Guide / November 2016
Introducing our Life Enrichment Day Program for the elderly and those who care for them.
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Alzheimer’s Association issues $7 million challenge to scientists to speed drug discovery Innovative clinical trial competition targets brain inflammation and immune system
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8 November 2016 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
he Alzheimer’s Association, in partnership with a fundraising initiative led by philanthropist Michaela “Mikey” Hoag, announces a new $7 million investment in clinical trials that target brain inflammation as an innovative avenue for Alzheimer’s disease therapy. Four cutting-edge studies will each receive $1 million to advance current research to the next stage of clinical trials. A unique, goal-driven competition offers an additional $3 million to the clinical trial that demonstrates the most promise for treating this devastating disease. The Part the Cloud Challenge on
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Neuroinflammation is the vision of Mikey Hoag, of Atherton, California, who has a personal connection to Alzheimer’s. The innovative funding program targets a critical gap in understanding and treating Alzheimer’s, and absorbs some of the financial risk associated with advancing these studies across a space in drug development where many promising ideas stall due to lack of funding. “When my father passed away with Alzheimer’s, I decided to use my personal story to rally others in support of Alzheimer’s research. When my mother started to show signs of the disease, I knew I had to kick these
there is HOPE in HOSPICE Locally Owned and Operated Medical Staff Available 24/7 Private Consultation No Delay in Start of Care Call us for more info
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efforts into high gear,” said Hoag. “We hope the competition we’re creating for additional funding will speed the rate of discovery and deliver a new and effective treatment or prevention strategy to doctors’ offices and people’s medicine cabinets more quickly.” Hoag’s efforts in partnership with the Alzheimer’s Association, including the Part the Cloud Challenge on Neuroinflammation, have raised more than $17 million for Alzheimer’s research with the help of more than 300 donors – many of them leaders in the technology industry in California’s Silicon Valley. Funding from Part the Cloud is focused on moving promising laboratory research into early-stage human clinical trials. It supports both academic and company-based research; 100 percent of the proceeds from Part the Cloud go directly to Alzheimer’s Association-supported research. “Innovative paths to discovery are critical to advancing Alzheimer’s disease research,” said Maria Carrillo, Ph.D., Alzheimer’s Association chief science officer. “We welcome the collaboration with Mikey and other donors to provide a blueprint for targeting new avenues for Alzheimer’s treatment, and overcoming funding challenges to maximize our chances for success.” Neuroinflammation as a Pathway to Discovery “Increasing evidence suggests neuroinflammation plays an important role in the brain changes that occur in Alzheimer’s and other neurodegenerative diseases,” said Carrillo. “By further understanding the role and the timing of neuroinflammation and immune responses, we will be able to further accelerate novel candidate Alzheimer’s
therapies.” Inflammation is a natural immune system response where defense cells are directed to fight infection or repair damaged tissue. However, persistent or misdirected inflammation can damage otherwise healthy tissue, such as the destruction of joint cartilage that occurs in arthritis or nerve damage in multiple sclerosis. Similarly, inflammation in the brain may help protect it from harm, such as the formation of the hallmark amyloid plaques of Alzheimer’s, but too much inflammation may damage the brain’s delicate nerve cells and intricate connections. Challenge Funding for Four New Clinical Trials The four selected projects will receive $1 million over two years for either a Phase I or Phase II trial. Projects will be evaluated for their ability to advance in human testing, such as being safe for use in people and the ability to influence the underlying biological process they are designed to target. The project that demonstrates the most viable translation to advanced clinical trials will be eligible to receive an additional prize of up to $3 million to further the proposed therapy’s development. Three of the four studies are testing potential therapies developed for other conditions that are being repurposed for Alzheimer’s. “A genuinely new Alzheimer’s drug has not been approved since 2003, and the currently approved Alzheimer’s medications are ineffective in stopping or slowing the course of the disease,” said Carrillo. “The more than five million Americans living with Alzheimer’s, and the many millions more worldwide, demand new and innovative approaches. We are obligated to pursue all legitimate avenues for treatment, such as targeting
neuroinflammation.” The funded projects are: • A Phase II clinical trial of the FDAapproved drug Leukine, to determine whether it is safe and can help slow or prevent the progression of Alzheimer’s, led by Huntington Potter, Ph.D., Professor and Director of Alzheimer’s disease research, Department of Neurology, Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus. Leukine is approved for reducing and preventing infection in people who have received chemotherapy. • A Phase II clinical trial to determine if the drug Sativex, a cannabis-based liquid medication that was previously tested for the alleviation of cancer-related pain, reduces brain inflammation and helps slow the progression to Alzheimer’s disease in people with mild cognitive impairment, led by Isidro Ferrer, M.D., Ph.D., Coordinator of the group Neuropathology at CIBERNED (Network Center for Biomedical Research in Neurodegenerative Diseases), Institute of Health Carlos III, Barcelona, Spain.
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• A study to test if treatment with the drug Senicapoc can reduce brain inflammation, alter the rate of brain amyloid accumulation, and improve memory in people with early Alzheimer’s disease or mild cognitive impairment. In previous research, a drug similar to Senicapoc helped to reduce brain inflammation, prevent nerve cell damage, and improve memory in mice with an Alzheimer’s-like condition. The project includes a Phase II clinical trial led by John Olichney, M.D., Professor and Neurologist at the University of California, Davis. Senicapoc has been shown to be safe in clinical trials of sickle cell anemia and asthma, but has yet to be tested in people with Alzheimer’s. • A Phase I clinical trial to examine the safety and efficacy to reduce brain inflammation of a novel therapy manufactured by Longeveron LLC using stem cells derived from healthy adult donors and that are delivered into the bloodstream of people with mild Alzheimer’s disease. Anthony Oliva, Ph.D., senior scientist at Longeveron, will serve as principal investigator, and Bernard Baumel, M.D., will serve as the
clinical investigator of the trial at the demonstrated the ability to target and University of Miami Miller School of reduce inflammation, promote tissue Disease Medicine. Longeveron isAlzheimer’s a life sciences repair, and improve brain function in Facts and company located in Miami, Florida. In Figures past research, this type of stem cell has mouse models of Alzheimer’s disease.
2016
ALZHEIMER’S DISEASE IS THE
6TH LEADING
CAUSE OF
DEATH IN THE UNITED STATES
MORE THAN
5 MILLION AMERICANS ARE LIVING WITH ALZHEIMER’S
1 IN 3 SENIORS DIES WITH ALZHEIMER’S OR ANOTHER DEMENTIA IN 2015, MORE THAN 15 MILLION CAREGIVERS PROVIDED AN ESTIMATED
ALZHEIMER’S COSTS CAREGIVERS MORE THAN THEIR TIME
FAMILY CAREGIVERS SPEND MORE THAN
$5,000 A YEAR
18.1 BILLION HOURS OF UNPAID CARE
EVERY
66 SECONDS SOMEONE IN THE UNITED STATES DEVELOPS THE DISEASE
CARING FOR SOMEONE WITH ALZHEIMER’S
FOR SOME FAMILIES THIS MEANS
IN 2016, ALZHEIMER’S AND OTHER DEMENTIAS WILL COST THE NATION
MISSING A VACATION
$236 BILLION
BUT FOR OTHERS, IT MAY MEAN
IT KILLS MORE THAN
GOING HUNGRY
BREAST AND PROSTATE CANCER COMBINED
Lee Central Coast Newspapers / Alzheimers Awareness Guide / November 2016
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“Uncovering the truth about Alzheimer’s”
10 November 2016 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
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Confronts damaging myths about the disease
t is common knowledge that Alzheimer’s disease robs people of their ability to remember, but other truths about the disease remain unknown. For instance, many people are unaware that Alzheimer’s is a fatal disease, its symptoms extend further than memory loss and that early diagnosis matters. “Everyone who has a brain is at risk of developing Alzheimer’s. Misunderstanding crucial facts about the disease can have devastating consequences for people living with Alzheimer’s and their caregivers, families and friends,” said Ruth Drew, Director of Family and Information Services, Alzheimer’s Association. “During Alzheimer’s & Brain Awareness Month, we are debunking the harmful misconceptions that keep people from seeking an Alzheimer’s diagnosis and reduce access to needed resources, clinical trials and support services.” Greater understanding is urgently needed given the dramatic impact of the disease. Alzheimer’s disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 that cannot be prevented, cured or even slowed. To improve the public’s understanding of the disease and to underscore the need for swift action, the Alzheimer’s Association is highlighting essential truths aimed at curbing common misconceptions about Alzheimer’s. These truths include: • Alzheimer’s disease is fatal – there are no survivors. From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased. More than 5 million Americans are living with Alzheimer’s disease, and by 2050 that number is projected to reach as many as 16 million.
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• Alzheimer’s disease is not normal aging. Alzheimer’s is a fatal and progressive disease that attacks the brain, killing nerve cells and tissue, affecting an individual’s ability to remember, think and plan. Brain changes associated with Alzheimer’s may begin 20 or more years before symptoms appear. Although age is the greatest known risk factor, Alzheimer’s is not a normal part of aging. • Alzheimer’s is more than memory loss. Many believe the disease only manifests itself through memory loss, when it may appear through a variety of signs and symptoms. However, since Alzheimer’s affects people in different ways, each person will experience symptoms and progress through the stages of Alzheimer’s differently. Experts from the Alzheimer’s Association have developed 10 key warning signs of Alzheimer’s disease that everyone should learn to recognize in themselves and others. • Alzheimer’s risks are higher among women, African-Americans and Hispanics. AfricanAmericans are about twice as likely as whites to have Alzheimer’s or another dementia. Hispanics are about one and onehalf times as likely. Additionally, more than two-thirds of Americans with Alzheimer’s disease are women. • Early detection matters. More than 5 million people are living with Alzheimer’s disease, but only about half have been diagnosed. Additionally, less than half (45 percent) of seniors diagnosed with Alzheimer’s disease or their caregivers are aware of the diagnosis. Diagnosis is often delayed due to low public awareness of the early signs of Alzheimer’s and general misperceptions about Alzheimer’s and other dementias. “Early diagnosis allows better access to quality medical care and support services, and provides the opportunity for people with Alzheimer’s disease to participate in decisions about their care, including providing informed consent for current and future plans,” Drew said. “Knowing the diagnosis early enables the person with Alzheimer’s to get the maximum benefit from available treatments, and may also increase chances of participating in clinical drug trials that help advance research.” • Alzheimer’s cannot be prevented, but adopting healthy habits can reduce your risk of cognitive decline and contribute to brain health. Staying mentally active, engaging in regular physical activity and eating a healthy diet benefits your body and your brain. There is also some evidence people may benefit from staying socially engaged with friends, family and the community. The Alzheimer’s Association is sharing steps to reduce your risk of cognitive decline with 10 Ways to Love Your Brain.
• Alzheimer’s is the most expensive disease in the country. Alzheimer’s disease remains one of the most critical public health issues in America, costing taxpayers $18.3 million each hour. The total national cost of caring for those with Alzheimer’s and other dementias is estimated at $236 billion a year, of which $160 billion is the cost to Medicare and Medicaid alone. As the number of Americans with Alzheimer’s grows, the total annual payments for health care, long-term care and hospice care for people with Alzheimer’s and other dementias are projected to increase to more than $1 trillion in 2050. • Caregiving can become anyone’s reality. “The enormity of the Alzheimer’s crisis is felt not only by the more than five million people in the United States living with the disease today, but also by their more than 15 million caregivers, friends and family,” Drew said. According to the 2016 Alzheimer’s Association Alzheimer’s Disease Facts and Figures report, it is estimated that 250,000 children and young adults between ages eight and 18 provide help to someone with Alzheimer’s disease or another dementia. In addition, 23 percent of Alzheimer’s disease and dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for underage children. The Alzheimer’s Association works with caregivers to enhance care and support for all those affected by Alzheimer’s and other dementias. Comprehensive online resources and information are available through the Association’s website at alz.org and the 24/7 Helpline at 800-272-3900. The Association provides assistance to more than 310,000 callers each year, offering translation services in more than 200 languages. During Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association is encouraging everyone to uncover the truth about Alzheimer’s and to show their support for people living with the disease by doing the following: • Participate in The Longest Day® on June 20, a sunrise-to-sunset event to honor those facing Alzheimer’s disease with strength, heart and endurance. • Join the Alzheimer’s Association in wearing purple throughout the month, especially on June 20. Share photos of yourself, family, friends and coworkers wearing the movement’s signature color via Twitter, Facebook, Instagram, etc. with the hashtag #ENDALZ. • Visit alz.org to uncover the critical truths about Alzheimer’s and why they matter.
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Landmark study finds U.S. dementia incidence highest in African Americans and American Indians First study to look at dementia risk in six racial and ethnic groups
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subscribers of Alzheimer’s & Dementia on the journal’s website at www.alzheimersanddementia.com. About Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association The mission of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (www.alzheimersanddementia. com) is to bridge the knowledge gaps across a wide range of bench-tobedside investigations. The journal creates a forum for rapid communication of new findings, ideas and perspectives; increases knowledge in diverse disciplines to promote early detection/diagnosis and/ or interventions; and provides the scientific impetus for new initiatives or public policies concerning research on prevention and new models of health services. The Alzheimer’s & Dementia umbrella includes the companion open-access journals: Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring (www.dadm.alzdem.com) and Alzheimer’s & Dementia: Translational Research & Clinical Interventions (www. trci.alzdem.com). About Elsevier Elsevier is the publisher of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association; Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring; and Alzheimer’s & Dementia: Translational Research & Clinical Interventions. Elsevier is a world-leading provider of information solutions that enhance the performance of science, health, and technology professionals, empowering them to make better decisions, deliver better care, and sometimes make groundbreaking discoveries that advance the boundaries of knowledge and human progress. Elsevier provides web-based, digital solutions — among them ScienceDirect, Scopus, Elsevier Research Intelligence and ClinicalKey — and publishes over 2,500 journals, including The Lancet and Cell, and more than 33,000 book titles, including a number of iconic reference works. Elsevier is part of RELX Group plc, a world-leading provider of information solutions for professional customers across industries. About the Alzheimer’s Association The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org or call 800.272.3900.
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remained. “These findings underscore the need for further research to better understand risk factors for dementia throughout life to identify strategies to eliminate these inequalities,” said Dr. Mayeda. Using the observed dementia incidence rates and a widely accepted method of calculating a person’s lifetime risk for developing a disease, the esearchers estimated the percentage of individuals free of dementia before age 65 in each racial and ethnic group who can expect to be diagnosed with dementia over the next 25 years. The projections were 8 percent of African Americans, 35 percent of American Indians/Alaskan Natives, 32 percent of Latinos, 25 percent of Pacific Islanders, 30 percent of Whites, and 28 percent of Asian Americans. “Even in the lowest risk groups in the study, the lifetime risk of developing dementia is high,” said study senior author Rachel Whitmer, Ph.D., Epidemiologist at Kaiser Permanente Northern California, Division of Research. “Our projections indicate that in every racial and ethnic group, over one in four people who survive to age 65 can expect to be diagnosed with dementia in their lifetime.” “As the authors point out, the findings demonstrate major inequalities in dementia incidence in a group of people who had regular and equal access to health care during the study period. This helps us understand the progress that needs to be made to effectively reduce these disparities,” said Keith Fargo, Ph.D., Alzheimer’s Association Director of Scientific Programs & Outreach. “In fact, reducing disparities in Alzheimer’s for minority populations is identified as a priority by the National Plan to Address Alzheimer’s Disease. To achieve this goal, we need to understand why the risk for Alzheimer’s and dementia is different among ethnic and racial groups. This is an important area of research for the Alzheimer’s Association.” The Alzheimer’s Association has provided $22.9 million for 131 studies over the past 23 years to better understand disparities in Alzheimer’s and ementia in ethnic and racial groups and the impact of lifestyle factors on risk for cognitive decline and dementia. With the Alzheimer’s Association’s support, the United States created the National Plan to Address Alzheimer’s Disease in 2012. The plan includes the critical goal of preventing and effectively treating Alzheimer’s by 2025. “Inequalities in dementia incidence between six racial and ethnic groups over 14 years” is available to
Lee Central Coast Newspapers / Alzheimers Awareness Guide / November 2016
he first study to look at dementia risk in a population representing the diversity of the United States finds dementia incidence to be highest in African Americans and lowest in Asian Americans. The rate of occurrence of dementia in African Americans was found to be 65 percent higher than Asian Americans. The results are published online today by Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. The study population included more than 274,000 members of Kaiser Permanente – a large, integrated healthcare delivery system in Northern California. The scientists compared dementia incidence across six racial and ethnic groups – Whites, Asian-Americans, Latinos, African Americans, American Indians/Alaskan Natives, and Pacific Islanders. “Most research on disparities in dementia includes only one to two racial and ethnic groups, for example only Whites and African Americans,” said tudy first author Elizabeth Rose Mayeda, Ph.D., ostdoctoral Fellow at University of California, San Francisco in the Department of Epidemiology and Biostatistics. “Our study is the only work that compares dementia for these six racial and ethnic groups representing the aging demographic of the United States in a single study population. It is also the first study to look at incidence of dementia in Pacific Islanders and American Indians.” The researchers used electronic health records covering medical visits from January 2000 through December 2013 to identify individuals diagnosed with dementia, and race and ethnicity information in the healthcare system’s member database to categorize participants into the six groups. The dementia diagnoses were either Alzheimer’s, vascular dementia, or non-specific dementia. The researchers found that dementia incidence over the 14-year study period ranged from an average annual rate of 26.6 cases of dementia per 1,000 people for African-Americans, and 22.2 cases per 1,000 people for American Indians/Alaskan Natives, to 15.2 cases per 1,000 people for Asian-Americans. In between were Latinos and Pacific Islanders with an average annual rate of 19.6 cases per 1,000 people, and whites with 19.3 per 1,000. As members of the same healthcare system, all study participants had regular access to medical care during the study period. Despite this, and after the researchers accounted for other illnesses, such as cardiovascular disease, the disparities in dementia incidence
12 November 2016 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
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