By Helen Matheny
Alzheimer’s disease is shaping up to be the greatest health crisis of the 21st century. Currently, 5.4 million Americans are living with Alzheimer’s disease—the sixth leading cause of death in America, and the only disease in the top ten with no cure or disease-modifying treatment.
According to the Alzheimer’s Association’s 2013 Facts and Figures Report, the number of individuals with Alzheimer’s is projected to rise to 16 million by 2050. In 2010, the Alzheimer’s Association estimated there were more than 44,000 West Virginia residents aged 65 and older living with Alzheimer’s disease.
This disease places an enormous emotional, physical and financial stress on individuals who have it and their family members. Informal caregivers, such as family and friends, provide the majority of care for people with Alzheimer’s disease in the community. In fact, in 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion according to the Alzheimer’s Association.
Caring for individuals with Alzheimer’s disease also strains the health and long-term care systems. Individuals with Alzheimer’s disease are hospitalized 2-3 times as often as people the same age who do not have the disease. Similarly, nearly half (48 percent) of nursing homes residents have Alzheimer’s disease. As the number of people with Alzheimer’s grows over the next two decades, this will place a major strain on these care systems as well as on Medicare and Medicaid. In 2013, the direct costs of caring for those with Alzheimer’s to American society will total an estimated $203 billion, including $142 billion in costs to Medicare and Medicaid. Total payments for health care, long-term care and hospice for people with Alzheimer’s and other dementias are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (in current dollars). This dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending.
Nearly 30 percent of people with Alzheimer’s and other dementias are on both Medicare and Medicaid, compared to 11 percent of individuals without these conditions. The average per-person Medicare costs for those with Alzheimer’s and other dementias are three times higher than for those without these conditions; the average per-person Medicaid spending for seniors with Alzheimer’s and other dementias is 19 times higher than average per-person Medicaid spending for all other seniors.
The passage of the National Alzheimer’s Project Act in 2010 by Congress mandated the development of the United States’ first-ever National Plan to Address Alzheimer’s Disease—a comprehensive roadmap with a bold goal to prevent and effectively treat Alzheimer’s disease and other dementias by 2025. The plan establishes five ambitious goals to both prevent future cases of Alzheimer’s disease and to better meet the needs of millions of American families currently facing this disease:
- Prevent and effectively treat Alzheimer’s Disease by 2025.
- Optimize care, quality and efficiency.
- Expand supports for people with Alzheimer’s Disease and their families.
- Enhance public awareness and engagement.
- Track progress and drive improvement.
The legislation also created the National Advisory Council on Alzheimer’s Research, Care and Services. Twelve non-federal members appointed by United States Health and Human Services (HHS) Secretary Kathleen Sebelius join ten federal members to meet quarterly to assist in the development of a national plan by HHS, Veterans Affairs, the Department of Defense, and the National Science Foundation to address the disease and to discuss the efficacy of government programs targeting the needs of individuals and caregivers coping with Alzheimer’s disease and related dementias. Council members alsoserve on one of three committees: Research, Clinical Care and Long-term Services and Supports.
The Advisory Council has made significant recommendations, including:
- Redesign Medicare coverage and physicians’ and other health care providers’ reimbursement to encourage appropriate diagnosis of Alzheimer’s Disease and to provide care planning to diagnosed individuals and their caregivers, and
- Develop and disseminate a unified curriculum based on best practice guidelines for primary care practitioners to become more knowledgeable about Alzheimer’s disease and enhance the skills necessary to deliver dementia capable care.
Helping to meet the National Plan’s bold goals is West Virginia’s own Blanchette Rockefeller Neurosciences Institute (BRNI), a unique, non-profit medical research institute dedicated to the study of memory and memory disorders, with its focus on Alzheimer’s disease and related dementias. The i nstitute’s mission is to expand and advance state-of-the-art scientific research of memory and memory disorders for purposes of prevention, diagnosis, and treatment, as well as, to promote translation of resulting discoveries to practical medical applications.
The institute’s Alzheimer’s Outreach and Registry Program provides physicians with education and tools to improve screening, diagnosis, treatment and care of patients with Alzheimer’s disease and related dementias. Led by Medical Director Shirley Neitch, MD, FACP, the education sessions help inform and connect the medical community with local resources, including the Alzheimer’s Association and the West Virginia Bureau of Senior Services, to better link patient treatment and care, as well as to support caregivers through the disease progression.
The National Plan sets aggressive goals to prevent and treat Alzheimer’s disease by 2025. For individuals and families battling this devastating disease, a cure cannot come soon enough. Until then, the development and implementation of a national plan, as well as the availability of state and local resources offers help and hope for millions of Americans.
About the Author
Helen Matheny serves as the director of the Alzheimer’s Disease Outreach and Registry Program at the Blanchette Rockefeller Neurosciences Institute (BRNI) at West Virginia University. In August 2011, United States Health and Human Services Secretary Kathleen Sebelius appointed Matheny to serve as one of 11 non-federal members of the Advisory Council on Alzheimer’s Research, Care and Services. She was reappointed to the Council in December 2013 for a four-year term. The Council will advise the Secretary on how to prevent or reduce the burden of Alzheimer’s disease and related dementias on people with these conditions and their caregivers. In January 2013, she was invited to be one of the 35 founding members of the national organization Women Against Alzheimer’s.
Before joining BRNI, Matheny served as the founding CEO of the West Virginia Medical Foundation, the educational and charitable organization of the West Virginia State Medical Association.
A graduate of Marshall University and West Virginia University, Matheny was appointed by Governor Tomblin as chairperson of the West Virginia Healthy Lifestyles Coalition. In addition, she serves on the Board of the West Virginia Health Improvement Institute and as a member of the West Virginia University School of Dentistry Visiting Committee.
