MISSION: Create a statewide comprehensive one-stop information and referral system accessible to all needing information on all aspects of Alzheimer’s disease if it is to be successful. This one stop system must be able to provide simple and understandable answers to all the commonly asked what, where, when, why, and how questions.

One of the universal problems for people with Alzheimer’s Disease, their family care providers, and professional care providers, including primary care physicians, is the lack of access to user friendly, up-to-date and accurate and complete information.  It is ironic and unfortunate in this era of information and technology that locating needed practical information continues to be a problem for so many people.  Persons living in rural areas and persons low on the socio-economic scale have additional and particular barriers in accessing needed information.

Thus, Virginia’s proposed Comprehensive Alzheimer’s Disease Center must successfully address these challenges and must create a statewide comprehensive one-stop information and referral system accessible to all needing information on all aspects of Alzheimer’s disease if it is to be successful. This one stop system must be able to provide simple and understandable answers to all the commonly asked what, where, when, why, and how questions.

Work Plan:

This group’s first task was to develop a work plan to achieve the goals of the committee.  This work plan guides the work and focus of the committee.  As part of the work plan, the group moved quickly to broaden its membership to include representatives of the Virginia Department of Social Services, area agencies on aging, Virginia Department for the Aging, SeniorNavigator.com, Alzheimer’s Association, the academic community, family caregivers, long term care facilities, AARP, the Virginia Alliance of Information and Referral Services, and the press.

The core has identified many of the existing information and referral programs currently serving Virginia and has heard presentations from several of these programs.

Members:

• Cathy Saunders (Alzheimer’s Association Greater Richmond Chapter) - Chair

• Marilyn Pace Maxwell (Mountain Empire Older Citizens) - Vice-Chair

• Bob Schaefer (Alzheimer’s Association Greater Richmond Chapter)

• Harry Baldwin (Lakewood Manor)

• Meade Boswell (United Way)

• Faye Cates (Virginia Department for the Aging)

• J. James Cotter (Virginia Commonwealth University)

• Jayne Flowers (Department of Social Services)

• Richard Lindsey, M.D.

• Kathy Massey (BayAging, Inc.)

• Sherry Peterson (Alzheimer’s Association Greater Richmond Chapter)

• Cecily Slasor (Virginia Department for the Aging)

• Jean Baldwin (VANHA)

• Katie Benghauser (SeniorNavigator)

• Scott Walker (SeniorNavigator)

Progress Report:

      The core has identified challenges and problems associated with the provision of information and referral services for those professionals, non-professionals, family caregivers, and individual persons impacted by and interested in Alzheimer’s Disease.  These include: the pattern that caregivers often do not seek information until they are in a crisis and are in need of information immediately; that family care providers are frequently overwhelmed by the huge amount of information available and would prefer concise, accurate information.

This core, in addition to receiving information on the information and referral services and capabilities of SeniorNavigator.com, the Alzheimer’s Association, and the Virginia Alliance of Information and Referral Services, further requested explanation of the information and referral services of area agencies on aging, community services boards, Virginia Cooperative Extension Services, local departments of social services, area health education councils, and health insurance providers. This information is currently being gathered.

Additionally, the I and R core identified several possible models of Information and Referral Services for Alzheimer’s Disease presently operating successfully in the country that would be worth studying.  They were The Texas Council on Alzheimer’s Disease and Related Disorders and the National Alzheimer’s Association Branding Project.  Information is being collected on these two national models.

The I and R core has identified several concepts which should be incorporated into the proposed virtual Alzheimer’s Disease Center.  These are as follows: the information and referral services currently being provided by various organizations must be recognized and included in the final plan; there probably will need to be more than one access point for this service; the information and referral component of the proposed center should not duplicate existing services; and, a creative marketing strategy will be of major importance.

The Alzheimer’s Commission in reviewing the work of the Information and Referral Committee noted that information and referral is a crucial component of the work of other committees and that there were particularly strong linkages between the I and R committee and the Education and Training, Services, and Databases cores.

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