For media inquiries,
contact Carol Steinberg, Executive Vice President,
Alzheimer's Foundation of America 866.AFA.8484 | email@example.com
Alzheimer’s Foundation of America Hosts Free Conference in New York
‘5 Boroughs Concepts in Care’ Event Offers Caregiving Strategies and Solutions
NEW YORK (May 14, 2013) –The rising number of people with Alzheimer’s disease and their caregivers often feel alone and unequipped to handle the daily challenges the brain disorder can bring. To offset this, the Alzheimer’s Foundation of America (AFA) will offer a hands-on opportunity for people to gain support and practical skills at its free “5 Boroughs Concepts in Care Conference” in New York on June 26.
This daylong educational event, which will be held at the New York Marriott Marquis hotel in Times Square, will feature three “tracks” of study – one for family caregivers, one for healthcare professionals and one for people with Alzheimer’s disease or a related illness.
Presentations by top health and caregiving experts will range from an understanding of the disease and tips for daily living to more hushed-over topics, such as heading off potential violence and how to handle inappropriate sexual behavior.
In addition, the conference will feature various dementia-related activities, including confidential memory screenings, the “Virtual Dementia Tour”—an interactive simulation of what it feels like to have dementia, and an exhibit hall. On the emotional side, AFA will display three dozen quilt panels from its powerful and heartfelt “AFA Quilt to Remember,” and Raymond W. Holman, Jr., a Philadelphia photographer, will show insightful portraits of family caregivers.
“Families affected by Alzheimer’s disease as well as healthcare professionals are starving for information about the brain disorder, especially as the incidence continues to climb,” said Carol Steinberg, acting CEO of the New York-based national organization. “The best way to approach this devastating disease is to not go it alone.”
AFA introduced its “5 Boroughs Concepts in Care Conference” last year to fill the gap left by the discontinuation of the long-time annual “Mayoral Conference on Alzheimer’s Disease.” In New York state, it is estimated that more than 300,000 people are living with Alzheimer’s disease or related disorders.
Presenters will include Paul Nussbaum, Ph.D., a clinical neuropsychologist and founder and president of Brain Health Center, Inc., opening in Pittsburgh this fall, which will take a holistic approach to wellness and brain health; Susan Glister, Ph.D., RN, renowned speaker on the disease and a founder and former executive director of the Alois Alzheimer Center, Cincinnati, the first dementia-specific facility in the United States; and Melanie Bunn, RN, a dementia training specialist for Alzheimer’s North Carolina, Raleigh, N.C.
In addition, Molly Arnold-Gay, granddaughter of Frank Broyles, former athletic director of the University of Arkansas and author of “Coach Broyles’ Playbook for Alzheimer’s Caregivers,” will provide insight into intergenerational caregiving. Arnold-Gay spent her teenage years helping to care for her grandmother, who had Alzheimer’s disease.
For individuals with Alzheimer’s disease, facilitators will engage attendees in horticultural, art, dance and other creative activities that showcase the benefits of social and mental stimulation. AFA will also offer respite care – supervised by professional caregivers – for people with more advanced dementia who are unable to participate in the sessions.
The “AFA Quilt to Remember” is an extraordinary work of art that marks a moving tribute to people living with dementia and their families. Introduced in 2005, as the nation’s first large-scale dementia-related quilt, it now consists of more than 150 unique panels. The majority are embellished with photographs, sentimental mementos and love notes.
Several panels that will be on display were made in the tri-state area, including one created by clients attending the adult day program at the Sid Jacobson Jewish Community Center, East Hills, N.Y.
“ We’re showing people [with Alzheimer’s disease] as productive people, and that is the goal of our program,” said Connie Wasserman, an associate executive director at the JCC. “These are people who just happen to have Alzheimer’s disease. We don’t define them by the disease.”
Attendees will also receive free breakfast, lunch, program materials and giveaways. Eli Lilly and Company, and Forest Laboratories, Inc. are the presenting sponsors of the family caregiver sessions . For more information and to register, call AFA at 866-232-8484.
About Alzheimer’s Foundation of America (AFA)
The Alzheimer’s Foundation of America, based in New York, is a national non-profit organization that unites more than 1,600 member organizations nationwide with the goal of providing optimal care and services to individuals confronting dementia, and to their caregivers and families. Its services include a toll-free hot line, educational materials, a free quarterly magazine for caregivers, and professional training. For more information about AFA, call toll-free 866-232-8484, visit www.alzfdn.org , follow us on Twitter (@alzfdn), and “like” us on Facebook (facebook.com/AlzheimersFoundationofAmerica).
Contact: Amanda Hirschhorn
Alzheimer’s Foundation of America Applauds President Obama for Advancing Far-Reaching Brain Mapping Project
NEW YORK, NY— The Alzheimer’s Foundation of America (AFA), a leading national nonprofit organization dedicated to optimal care for people with Alzheimer’s disease and their families, today applauded President Obama’s announcement to invest $100 million in ground-breaking research that will map the human brain. The “BRAIN” (Brain Research Through Advancing Innovative Neurotechnologies) Initiative, an idea that the President first noted in his State of the Union address earlier this year, is aimed at uncovering new ways to treat, prevent, and cure brain disorders such as Alzheimer’s disease and traumatic brain injury.
Statement by Carol Steinberg, acting chief executive officer of the Alzheimer’s Foundation of America:
“The Alzheimer’s Foundation of America applauds President Obama for committing substantial research dollars toward the better understanding of the human brain and for his continuing recognition of the public health crisis posed by Alzheimer’s disease.
“The BRAIN Initiative is an exciting development and a potential game changer in unlocking the mysteries of Alzheimer’s disease. This far-reaching project holds the promise of providing deeper insights into concepts such as cognitive reserve, ultimately leading to ways to treat or even prevent Alzheimer’s disease. It is just the shot in the arm that both scientists and families need right now, especially in light of flat research funding for Alzheimer’s disease and the threat of this devastating disease overwhelming more and more Americans.
“AFA’s hope is that funding for the BRAIN Initiative is the start of a pipeline of stepped-up funding for other research toward an effective treatment and cure of Alzheimer’s disease as well as for care-related support services for individuals with the disease and their caregivers. In addition to investing in larger initiatives that have the potential for big payoffs in the future, we need to continue to fund research farther along in the drug development process so that families can embrace treatment and prevention in their lifetimes.
“Bolstered by the strength of the new BRAIN Initiative, now is the time for all Americans to press forward to ensure that the goals of the National Plan to Address Alzheimer’s Disease are implemented to the relief of current and future generations.”
Statement by Jacobo Mintzer, M.D., chairman of the Alzheimer’s Foundation of America’s Medical and Scientific Advisory Board, and professor at the College of Health Professions, Medical University of South Carolina: “I was delighted by today's announcement regarding the BRAIN Initiative. Today we start a journey full of expectations and unknowns.
“Where will the understanding of brain functioning lead us? Will it be possible to understand how the brain processes information, how lesions in the brain alter cognitive networks, and how the brain overcomes them? Will we be able to intervene in the process? Will we discover how pharmacological treatments affect this process?
“Regardless of the destination, the journey will provide yet unknown scientific insight that will change the paradigms that we use today to treat brain diseases.
“The Alzheimer’s Foundation of America, which has been a pioneer in establishing the development of strategic alliances to attack Alzheimer's disease, strongly supports this model of cooperation between government and the private sector. It is only through a shared commitment that our community can explore this frontier and secure solutions.”
Currently, Alzheimer’s disease, which results in loss of memory and other intellectual functions, affects as many as 5.1 million Americans and is the sixth leading cause of death in the United States. Advanced age is the greatest known risk factor.
The Alzheimer’s Foundation of America, based in New York, is a national nonprofit organization that unites more than 1,600 member organizations nationwide with the goal of providing optimal care and services to individuals confronting dementia, and to their caregivers and families. Its services include counseling and referrals by licensed social workers via a toll-free hot line, e-mail, Skype, and live chat; educational materials; a free quarterly magazine for caregivers; and professional training. For more information about AFA, call toll-free 866-232-8484 or visit www.alzfdn.org.
Contact: Amanda Hirschhorn
Alzheimer’s Foundation of America Releases Recommendations to Update National Alzheimer’s Plan
‘Time to Build’ Report Declares ‘More Needs to Be Done’ to Manage Health Crisis
NEW YORK, NY —Noting that “more needs to be done” to tackle the escalating incidence of Alzheimer’s disease, the Alzheimer’s Foundation of America (AFA) today released a report that includes more than three dozen recommendations to build upon the current goals of the federal government’s historic national Alzheimer’s plan and take the initiative to the next level.
“Our nation has the opportunity to dig even deeper to fill remaining gaps,” said Eric J. Hall, AFA’s president and CEO, and the report’s author. “Further action on the plan’s initial strategies and additional goals and strategies can produce a more defined response to this crisis and make a greater difference in people’s lives.”
Hall said the recommendations “are not overly ambitious; rather, they are unquestionably necessary at this juncture.”
The U.S. Department of Health and Human Services (HHS) released the first “National Plan to Address Alzheimer’s Disease” in May 2012, and is charged with updating the plan annually. The plan’s overarching initial goals call for preventing and effectively treating Alzheimer’s disease by 2025, and expanding support for people with Alzheimer’s disease and their families.
The public-private Advisory Council on Research, Care and Services, of which Hall is a member, will be meeting January 14 to suggest changes to the plan. HHS is expected to release the amended version in April.
AFA’s new report, entitled “Time to Build,” measures the national plan’s progress to date as well as offers additional recommendations related to its three areas of focus: research, clinical care and long-term services and supports.
It notes that the inaugural plan “provides solid stepping stones toward substantial change” and that implementation to date of existing action steps is “impressive.” It cites, for example, greater intergovernmental agency cooperation, a new comprehensive government Web site on the disease, and the initial development of training materials.
“A firm foundation has been laid to help move the needle toward better research discoveries, better care practices and better public awareness of Alzheimer’s disease,” Hall said. “But if we want to effectively combat this looming epidemic, we need more. Now is the time to build. And given the enormity of this disease state, the federal government must lead the charge.”
Alzheimer’s disease results in loss of memory and other intellectual functions, and is the sixth leading cause of death in the United States. Currently, most informal caregivers are unpaid and untrained, and provide more than 80 percent of long-term services.
Chief among AFA’s recommendations related to the enormous cost borne by families, AFA urges the expansion of publicly-funded “participant-directed” programs that would allow participants to hire family members, including spouses, children and teens, as paid caregivers. In addition, the organization suggests federal tax credits for primary family caregivers; income tax deductions for out-of-pocket costs for long-term care services; greater access to government-funded home- and community-based care services such as adult day programs and diagnostic and care planning services; incentives for employers to adopt family-friendly workplace policies; and qualifying all people with Alzheimer’s disease, regardless of age, for Medicare benefits and Administration on Aging programs.
AFA also calls on the federal government to strengthen efforts to build a high-quality dementia care workforce by offering federal student loan forgiveness for professionals in geriatrics and gerontology, establishing a 24-hour call center for dementia healthcare professionals, and requiring licensure and/or accreditation of facilities that care for people with dementia.
And in an effort to address the housing needs for this vulnerable population, AFA is encouraging the U.S. Department of Housing and Urban Development and other stakeholders to develop new, cost-effective transitional housing as a viable alternative to institutionalization.
To further promote timely and accurate diagnosis, AFA calls for initiating an awareness campaign for physicians—similar to the new campaign for the public; promoting the cognitive detection aspect of the Medicare Annual Wellness Visit; utilizing federal and state health facilities as memory screening sites; replacing older memory assessment tools currently suggested by the Centers for Medicaid and Medicare Services with newer, more efficient models; and encouraging federal support of genetic counseling for at-risk family members.
AFA’s research recommendations include establishing large-scale patient registries to facilitate clinical trial recruitment, utilizing uniform data standards to facilitate data share and FDA review of new drugs, and setting up international fund to collect revenues to support research.
“To remain relevant and responsive,” Hall said, “the national plan needs to adapt to the changing landscape in research, clinical and caregiving trends, and it must pay equal attention to quantifiable and quality care and research.”
The “Time to Build” report is posted on www.alzfdn.org.
Alzheimer’s disease currently affects more than 5.1 million Americans. The prevalence of the brain disorder is expected to escalate in line with the nation’s aging population; advanced age is its greatest known factor.
The Alzheimer’s Foundation of America, based in New York, is a national nonprofit organization that unites more than 1,600 member organizations nationwide with the goal of providing optimal care and services to individuals confronting dementia, and to their caregivers and families. Its services include counseling and referrals by licensed social workers via a toll-free hot line, e-mail, Skype and live chat; educational materials; a free quarterly magazine for caregivers; and professional training. For more information about AFA, call toll-free 866-232-8484 or visit www.alzfdn.org.
Contact: Carol Steinberg