OUR ROLE AND INFLUENCE
In 2004, the Virginia Alzheimer’s Disease and Related Disorders Commission created a statewide “Virtual Alzheimer’s Disease Center.” In 2006, the Commission refined this effort so that over the long term it will create a centralized mechanism for ascertaining patient and training needs and mounting coordinated responses to those needs before they reach crisis proportions. Initially titled the “Virginia Alzheimer’s Disease AlzPossible Initiative” (VACAPI), the effort is now most frequently referred to as “AlzPossible.”
With original funding from the U.S. Administration on Aging, AlzPossible was established as a virtual center or a center without walls. The virtual center concept is a hybrid organization designed to leverage intellectual assets, rather than physical assets, to attain its corporate objectives. Since 2008, AlzPossible has received funding support through several grants from Virginia’s Geriatric Training and Education Initiative and it continues to receive regular support, including funding, resource development, and ongoing administration and maintenance from:
- Virginia Department for Aging and Rehabilitative Services
- Virginia Alzheimer’s Disease and Related Disorders Commission
- Virginia Commonwealth University Department of Gerontology
- World Events Forum, Inc.
The fundamental philosophy of the virtual center concept is to create a vibrant environment for sharing knowledge by assembling a critical mass of talented and highly motivated professionals with different skills and perspectives. The operational ethic is cross-disciplinary, involving experts and professionals from different disciplines and/or institutions working together on a common problem. The research philosophy is based on a systems approach to the solution of complex problems, where the emphasis is on building a multidisciplinary team of experts who individually have an in-depth knowledge of different parts of the problem and work to translate research into practice.
By establishing an efficient management organization, AlzPossible expects to accelerate the process of sharing effective interventions, new methods of care, and evidence based practices developed through translational research aimed at reducing disability and extending independent functioning.
Life expectancy of the oldest-old is increasing, while the prevalence of dementia increases nearly exponentially beyond age 65. The number of people being affected by Alzheimer’s disease (AD), the most prevalent form of dementia, is growing at a faster rate than the progress being made in discovering the means to cope with the emerging epidemic. In other words, the pace of developing interventions to delay the symptoms of disease is not adequate to overcome the demographic forces, which are increasing the total number of affected individuals. The approaching crisis in the national health care system stems from not only the growing number of older people at risk for prolonged disabilities such as cognitive impairment due to dementia but also the rising cost of labor intensive care.
According to the Alzheimer’s Association, in 2014, “the direct costs to American society of caring for those with Alzheimer’s will total an estimated $214 billion, including $150 billion in costs to Medicare and Medicaid” (Alzheimer’s Association, Facts and Figures, 2014). Further, if this trend continues, by 2050, the cost will be an estimated $1.2 trillion. By the year 2050, more than 16 million individuals, up from 5.2 million today, may be affected by Alzheimer’s disease and may require medical care and institutionalization.
The patterns of demographic, economic, and sociologic changes in society are going to affect profoundly how care is provided for people with Alzheimer’s disease. These patterns will have their full impact as the “baby-boom” generation ages into late life 20 to 30 years from now. These trends, which foretell the devastating toll of dementia, have already begun to shape the future strategic plans of many public and private organizations. Not only the families of the people with the disease but also the whole population of the Commonwealth of Virginia, and the country as a whole will feel the projected changes.
At the same time, remarkable progress has been made since 1978 in understanding Alzheimer’s disease. Now the field has access to a rich array of talents, tools, ideas, knowledge, and experiences from diverse disciplines, providing unique opportunities for quantum leaps in uncovering cause(s), early detection, treatments, and new models of care. New discoveries and leads have begun to provide some measure of hope for interventions that could delay the onset of disabling symptoms and enable patients to continue functioning independently for longer periods. It is estimated that a modest delay in the onset of symptoms by five years for all age groups over 65 would reduce nearly half the total number of individuals with the disease.
Therefore, the time is ripe to launch a well-coordinated initiative within the Commonwealth of Virginia to capitalize on existing knowledge and accelerate the process of translating new knowledge into practical applications. The success of such a venture is virtually assured because the Commonwealth is fortunate to have all of the essential elements in place: a) the necessary human capital, b) a very good network of social services providers, c) a rich scientific infrastructure, and d) a wealth of exceptional medical, scientific, and technical expertise.
Guided by Virginia’s Dementia State Plan, the mission of AlzPossible is to promote workforce development through training in person-centered, ethical dementia care and to ensure the development of a broad range of well-integrated programs, services and research designed to reduce the burden of the disease on the citizens of the Commonwealth of Virginia. The goal is to disseminate information about effective interventions that maintain and/or extend the independent functioning of people with the disease and to then share evidence-informed and evidence-based methods to ensure research translates to all levels of care. The primary objective of AlzPossible is to provide a framework for a “Systems Approach” in attempting to disseminate information about cost-effective solutions to problems with complex interactions. This approach places great emphasis on coordination and efficient use of existing resources, services, technology-transfer/educational and research activities, and the technical/scientific/professional expertise within the Commonwealth of Virginia. AlzPossible, integrates all relevant programs, services and other bench-to-bedsides activities to leverage as much added value as possible from what is already in place in Commonwealth of Virginia. AlzPossible shares in the Alzheimer’s Association’s vision that calls for the creation of “A World without Alzheimer’s Disease” in the 21st century. The Center will strive to establish a prototype for the nation to follow by creating “A Commonwealth without Alzheimer’s disease”!
SPECIFIC CHALLENGES TO BE ADDRESSED
Following the publication of Virginia’s Dementia State Plan in December 2011, the Virginia Alzheimer’s Disease and Related Disorders Commission reshaped several cores to: 1) address strategic problem areas as high priority targets in need of new initiatives and/or further development and 2) help develop a strategic business plan that leveraged AlzPossible as a virtual statewide initiative. Organized around the goals of the Dementia State Plan, the cores focus on challenges, problems, and opportunities related to capacity-building, services, social, financial, and scientific research issues that the Commonwealth of Virginia must address in order to improve diagnosis and care, and possibly, prevention. The cores are:
- Data and Research: Focuses on Goals II (Use Dementia Related Data to Improve Public Health Outcomes) and V (Expand Resources for Dementia Specific Translational Research and Evidence Based Practices)
- Training: Focuses on Goal III (Increase Awareness and Create Dementia Specific Training)
- Coordinated Care: Focuses on Goals I (Coordinate Quality Dementia Services in the Commonwealth to Ensure Dementia Capability) and IV (Provide Access to Quality Coordinated Care for Individuals with Dementia in the Most Integrated Setting)
- Legislative: Lastly, the Virginia Alzheimer’s Disease and Related Disorders Commission has a Legislative Committee that looks for annual opportunities to advance the goals and objectives of the Dementia State Plan through legislative, regulatory, budgetary, and related policy processes.
To read more about the Dementia State Plan, click here.
The strength of our Commission relies on the human resources built within three interdependent cores and a legislative committee. Members of the cores are representatives from the public, academia, government, industry, and social services organizations throughout the Commonwealth of Virginia. Most Commission members have been personally impacted by dementia, with many having served as family caregivers for loved ones. As listed below, the cores have also provided some resources and links relevant to their specific efforts.
Data and Research Workgroup:
Karen Garner (Chair), Carol Manning, Rona Altschuler, Patricia Slattum, Connie Coogle, Sonya Barsness, Karen Bell, and Courtney Tierney (ex officio)
Charles Martino (Chair), Janet Honeycutt, Vivian Bagby, Chris Desimone, Julia Dillon, and Courtney Tierney (ex officio)
Coordinated Care Workgroup:
Lory Phillippo (Chair), Valerie Hopson-Bell, Sharon Davis, Rick Jackson, Andrew Heck, Lynne Seward, E. Ayn Welleford, Marie Kolendo, and Courtney Tierney (ex officio)
Katherine Kennedy (Chair), Sharon Davis, Laura Bowser, Carter Harrison, G. Richard Jackson, Karen Garner, and Courtney Tierney (ex officio)
Alzheimer’s Disease and Related Disorders Commission
The Commission serves in an advisory capacity to the Governor and the Secretary of Health and Human Resources (HHR), and exists to assist people with Alzheimer’s disease or related disorders, as well as their caregivers.
The Commission consists of nonlegislative citizen members, appointed as follows:
– Three members are appointed by the Speaker of the House of Delegates; – Two members are appointed by the Senate Committee on Privileges and Elections; and – Ten members are appointed by the Governor. Of these ten, seven are appointed from the board members, staff members and volunteers of the Virginia Chapters of the Alzheimer’s Disease and Related Disorders Association. The other three members are appointed from the public at large. The Commission elects a Chairman from among its membership. View a current list of Commission members.
View a complete description of the selection process of Commission members and their respective terms of service. Visit the Virginia General Assembly’s Code of Virginia page. Type“51.5-154″; in the box under the words “Enter search phrase and press submit”, then press the “submit” button.
The Commission meets quarterly and all meetings are open to the public. Meetings of the Commission and each of its committees are announced in advance on the Commonwealth Calendar. Minutes of recent meetings are also available on the Calendar and at the DARS website.
The Commission prepares an annual report for the Governor and General Assembly. You may review the Commission’s current report.
Members of the Alzheimer’s Disease and Related Disorders Commission presented at the 2016 Governor’s Conference on Aging. The presentation highlighted progress made achieving Virginia’s Dementia State Plan and current efforts. An overview of innovative programs supporting caregivers and persons with dementia was shared including FAMILIES, and the Care Coordination Program and Effective Strategies Program. To view the presentation slides please click here
Dementia Services Coordinator
Devin Bowers, Virginia Department for Aging and Rehabilitative Services, Dementia Services Coordinator
The Virginia Department for Aging and Rehabilitative Services, in collaboration with community partners, provides and advocates for resources and services to improve the employment, quality of life, security, and independence of older Virginians, Virginians with disabilities, and their families. Within DARS, Mrs. Bowers reviews existing programs and works with agencies to more effectively deliver services to Virginians with dementia and identify gaps and reduce duplication in those services. In addition, she coordinates and supports the Alzheimer’s Disease and Related Disorders Commission’s activities and evaluates the Commonwealth’s services for individuals with dementia and their caregivers. She supports the “No Wrong Door” initiative, Virginia’s approach to delivering convenient and efficient access to health and human services for older adults and adults with disabilities.
Mrs. Bowers holds a master’s degree in public health from George Mason University and a postgraduate certificate in aging studies from Virginia Commonwealth University.
Read Virginia Dementia Services Coordinator’s blog titled “Ask the Expert” where Virginia’s first Dementia Services Coordinator, Charlotte Arbogast, connects with the community of researchers, clinicians and professionals on various topics of interest.
Ellen Phipps Presenter
Ellen Phipps, CTRS, MSG, Gerontologist, is Co- Author of Connections: Engagement in Life for Persons with Dementia, A Complete Activities Guide; Vice President of Programs & Public Policy at the Alzheimer’s Association, Central & Western Virginia Chapter; and, adjunct faculty at Virginia Commonwealth University.
Ellen specializes in creative therapeutic design for persons diagnosed with Alzheimer’s disease and has established intergenerational programs, and arts and music programming in a variety of settings. She received her Bachelor of Science in Therapeutic Recreation from the University of Colorado, at Boulder, and, a Master of Science degree in Gerontology from Virginia Commonwealth University.
Before joining the Alzheimer’s Association, Ellen served as Director of Adult Day Centers both in Charlottesville, VA and Somerset, England providing creative and innovative approaches to care.