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Meetings of the Coordinating Council for Services Related to Alzheimer's Disease and other Dementias (01/29/08)

Opening Comments:

• David Hoffman, Director of the Bureau of Chronic Diseases from the New York State Department of Health (NYSDOH) Bureau of Chronic Disease Services (BCDS), welcomed everyone to the meeting, acknowledged the expertise of the members of the Coordinating Council for Services Related to Alzheimer's Disease and Other Dementias (Council) and thanked Elizabeth Berberian for all her efforts to date on work related to the Council. He thanked the Alzheimer's Association Chapters and conveyed his thanks to the members of the Council for their patience with the vetting process. Mr. Hoffman spoke about the process of developing the state plan which will identify gaps and barriers across the state, and will bring together state and local agencies to work together. He then asked the Council members to individually introduce themselves and talk about their affiliation to the work of the Council.
• Mark Kissinger, Deputy Commissioner for the NYSDOH Office of Long Term Care (OLTC), spoke about his desire to learn more about the issues related to Alzheimer's disease. He indicated that he is pleased to be working with the New York State Office for the Aging (SOFA) and is looking forward to going across the state to learn the impact of Alzheimer's disease and participating in the development of the state plan. Mr. Kissinger indicates that caregivers will be invaluable to the Council.
• Michael Burgess, Director of the NYSOFA, indicated that he was also pleased to be working together with the NYSDOH and other agencies. Although SOFA does not provide medical services, seniors are the agency's paramount concern. Mr. Burgess acknowledged the SOFA staff who also attended the meeting. He spoke about the different Councils that SOFA participates on including the Family Caregiver Council, the new Geriatric Mental Health Planning Council co-chaired with Office of Mental Health (OMH), the Integrated Setting Council for people living in the community and SOFA's upstate and downstate NY Connects State Long Term Care Advisory Councils. Director Burgess acknowledged the recently released recommendations of the Family Caregiver Council and explained that they do not pertain solely to caregivers of the elderly but incorporate issues related to caregiving across the lifespan.

Overview of the Council and its Responsibilities.

• Mr. Hoffman presented an overview of the Council, its roles and responsibilities, as follows:
  • Historical background of Previous State Reports and the Current Legislation: Mr. Hoffman explained that there have been two previous reports on Alzheimer's disease issued in NYS; one, developed by the NYS Health Planning Commission and NY Academy of Medicine, was released in 1984, and the second, a state plan created by the NYSDOH in collaboration with the previous Alzheimer's Disease and Other Dementias Task Force, was released in 1995. In 2007, legislation created the new council as part of the Public Health Law (Section 2004-a).
  • Charge to the Council: The Council was created to facilitate interagency planning and policy development, review specific agency initiatives for their impact on services related to the care of persons with dementia and their families, and to provide a continuing forum for concerns and discussion related to the development of the state plan. The Council will serve as advisor to DOH and SOFA in the development of reports and recommendations.
  • Description and Status of the Council membership: The Council currently has 16 Members: a mix of Governor, Legislative and NYS agency appointments. There are currently 5 legislative appointments yet to be made.
  • Purpose of the State plan: The purpose of the state plan is to develop a comprehensive integrated approach for addressing Alzheimer's disease, mild cognitive impairment (MCI) and other dementias in the community. The law designates numerous areas that must be addressed in the plan, which is due to be completed by June 2009.
  • Sources to Inform the State Plan: The Council will utilize many sources for input and guidance in developing the state plan including members, community forums, expert panels, researches, support groups, caregivers, service and advocacy organizations, clinicians, consumers and other interested parties. We anticipate common issues across the state; however challenges will differ in rural and urban areas.
  • 8 Community Forums: Eight community forums will be held throughout the state to gain input from consumers, providers, key researchers in the field and other interested parties into the development of the state plan. Proposed dates and locations were reviewed in the afternoon session.
  • Role of the Council Members (Information Gathering Phase): Council members will be offered the opportunity to deliver welcoming remarks at the community forums. Council members will be asked to identify providers, researchers, caregivers and patients to participate in the forums or to offer their expertise at individual key informant interviews or on expert panels.
  • Role of Council Members (State Plan): Council members will have an active role in writing, editing and sharing information as the state plan is developed. Information learned at the forums will be synthesized and prioritized to assist in the development of a clear and concise state plan. Council members will also be asked to support budget items that emanate from the report. In response to a question from a Council member, Mr. Hoffman indicated that consumers will be included in the community forums, and that the term "consumers" is used broadly to include caregivers, individuals with early stage Alzheimer's disease and their family members.
  • Role of NYSDOH Staff: Mr. Hoffman explained that the NYSDOH staff will provide administrative support to the Council by convening meetings, community forums, and expert panels as well as providing meeting minutes and facilitating communication between Council members and workgroups. He also indicated that an amendment has been proposed to modify the language in the legislation which prohibits funding for travel of Council members. If approved, reimbursement of their travel would be allowed after April 1, 2008.
  • Mr. Hoffman stated that the press release announcing the Council is pending approval and that he anticipates that it will be released in the near future. Members will be notified of its release.

Overview of Alzheimer's Disease and Other Related Dementias

• Mr. Hoffman introduced Beth Smith-Boivin, Council member and Director of the Anne B. Goldberg Alzheimer's Resource Center of Albany Medical Center.
• Ms. Smith-Boivin presented an overview of Alzheimer's disease and other related dementias that included the definition and types of dementia, brief summary of Alzheimer's disease statistics, caregiver challenges, review of stages and symptoms, diagnosis and clinical evaluation, present state of the art treatments, summary of new directions in research and treatments, and public health opportunities.
  • A discussion took place during the presentation regarding the difficult issue of finding placement for persons from NYS with Alzheimer's disease who present with behavioral challenges. Ms. Smith-Boivin indicated that a number of these individuals are placed in Massachusetts, in programs specifically designed for individuals with behavioral manifestations. Massachusetts facilities will often prioritize NYS residents over Massachusetts residents, most likely because NYS Medicaid rates are higher.
  • A discussion began about frontotemporal dementia and how it has an earlier onset than Alzheimer's disease, with its first symptoms being behavioral rather than cognitive. Persons with frontotemporal dementia are often recipients of mental health services, between the ages of 40-50 years old, and have brain scans which show considerable shrinkage of the frontal lobe. In its early stages, people with this type of dementia are very functional and have no problem with activities of daily living. Medications used for Alzheimer's disease are not appropriate for this type of dementia as they overstimulate the person, thereby worsening the behavioral issues.

Developing the NYS State Comprehensive Plan on Alzheimer's Disease and Other Dementias in the Community

Opening Comments:

• Elizabeth Berberian and Greg Olsen introduced the NYSDOH and NYSOFA staff who have been working behind the scenes in preparation the Council meeting.
• Ms. Berberian reviewed the contents of the packets given to each person in attendance.
• Council member Kathleen Doyle shared her experience as a member of the team which wrote the 1995 NYS plan on Alzheimer's disease and other Dementias. She stated that the development of the plan was a 2 year process and unfortunately, there was no legislative support to carry forward any of the recommendations.

Data/Surveillance:

• During the opening comments, the Behavioral Risk Factor Surveillance System (BRFSS) was discussed. This led to a discussion regarding data collection issues and challenges surrounding Alzheimer's disease.
• Mr. Hoffman clarified that BRFSS is a national survey conducted by the Centers for Disease Control and Prevention (CDC) in conjunction with all 50 states and their health departments. This telephone survey tracks data on a variety of health risk behaviors, preventive screenings and other related areas. More detailed information on BRFSS can be found at: http://www.cdc.gov/brfss/ .
• In 2008, the first time, the NYSBRFSS contains a module related to caregiver issues including dementia. Several states will be utilizing these questions.
• Dr. Pat Lillquist, the Director of the NYSDOH Alzheimer Disease Registry, remarked that 7600 NYS residents are surveyed using the BRFSS template each year.
• Greg Olsen from SOFA also remarked that SOFA will be conducting its Elder Caregiver Program Survey in the spring. This survey will provide another data source for inclusion in the state plan.
• A council member asked if BRFSS was only in English. Since 1997, the CDC has used both Spanish and English versions of the survey.
• The CDC is working with the national office of the Alzheimer's Association to develop content around a new module for BRFSS related to mild cognitive impairment. The medical director for the NYSDOH BCDS, Dr. Heather Dacus, will participate in a workgroup in February to discuss the development of and content related to this module.
• Other data sources identified during this discussion included SPARCS, the Alzheimer's Disease Registry and Medicaid. These sources, and others yet to be identified, will be used to inform the development of this state plan.
• Mary Ann Malack-Ragona, questioned whether these data sources, particularly BRFSS, will be reliable and whether they represent the best data sources. Ms. Malack-Ragona told the Council about a data system, used by the Middle Country Library System, called Community Resource Database of Long Island (CRDLI); This system is now converting to a new program in an effort to accommodate NY Connects. The current website can be viewed at www.crdli.org.
• Dr. Lillquist encouraged Council members to read the article in their packets related to data surveillance.
• The group acknowledged that any other potential data sources would be valuable.
• A Council member commented that data sources may be biased by the fact that diagnosed individuals may not be willing to share this diagnosis given the concern that it may hinder their access to needed services.
• Mr. Hoffman commented that cancer diagnoses previously created a similar situation. Increased efforts to decrease any stigma attached to diagnoses of Alzheimer's disease and other dementias could similarly decrease discrimination concerns in the future.

State Plan Parameters

• Mr. Hoffman presented the proposed state plan parameters:
  • Scope of report includes community settings
  • Represents entire state
  • Includes regions and topics identified in legislation
  • Plan will be fluid and updated annually
  • Evidence-base cited wherever possible
  • Anecdotes will be used for illustration and poignancy
• Council members discussed the definition of the term "community."
  • "Community" will include everything short of nursing home care, given that there are other work groups working on restructuring the long term health care system.
  • "Community" also can include acute care, home care and assisted living.
  • A Council member commented that the report should address/acknowledge the importance of long term care.
  • A Council member pointed out the fact that people with Alzheimer's disease are placed in nursing homes because there are no other options for care, and requested that this report address this issue of "premature placement."
  • A Council member asked the difference between adult homes and assisted living residences. Mr. Kissinger commented that ultimately there are not a lot of differences. NYS is in the process of developing standards and regulations for assisted living residences, but at this point does not have a lot of experience with this kind of facility.
  • The Council agreed on the importance of identifying other relevant work group and advisory council recommendations, related to other state plans, which could be incorporated into our report and/or included in the appendix of our report.
  • It was also suggested that the plan should be careful not to create silos of care.
• Council members agreed on the importance of using evidence-based information as much as possible in the plan and using anecdotes to illustrate the needs and issues facing NYS residents.
• Council members discussed the shortage of primary care providers, how primary care providers are not well prepared in medical school to work with Alzheimer's disease and other dementias, and strategies that can be put in place to better prepare them for this work.

State Plan: Recommendations

• Mr. Hoffman discussed the following recommendations for the writing of the state plan which were developed by the NYSDOH:
  • Ensure that recommendations are realistic (measurable and doable)
  • Include long and short term recommendations
  • Identify who is responsible for implementation of recommendations
  • Identify needed resources and policy changes
  • Identify opportunities for collaboration among state agencies
• Mr. Hoffman then asked the group to comment on these issues and identify any missing issues.
• A Council member pointed out the importance of addressing labor and workforce issues, and inquired as to why the Department of Labor was not at the table. The possibility of inviting a representative of that department to participate in future meetings.
• Mr. Kissinger brought up adult protective and exploitation issues and suggested that key informant interviews with social workers might provide some information related to issues of neglect and abuse in dementia patients.
• Mr. Kissinger also stressed the importance of incorporating the recommendations from other similar workgroups that impact dementia care.
• The Council members discussed the role that risk reduction and prevention should play in this report and its recommendations.
  • A suggestion was made that this report address research related to this area.
  • A Council member commented that the focus should be on "risk reduction". She stated that the word "prevention" could be misleading.
  • Another Council member stated that using the term "optimal cognitive health" and avoiding the term "prevention" would be a good option for addressing risk reduction in this report.
• Council members agreed on the importance of addressing cultural issues.
• There was group consensus that the initial state plan will not address all issues, but may identify issues for tentative study. Additional issues will be covered in annual future updates of the plan.

Proposed Table of Contents

• Mr. Hoffman reviewed the draft table of contents. This was offered as a skeleton plan that includes all of the key points required by the legislation which created the Council.
• Mr. Hoffman emphasized that this is a very rough draft and that the group's feedback on the plan's contents is very important. It is expected that this version will grow and change as the process moves forward.
• Overview and Burden of Alzheimer's Disease and Other Dementias
  • Council members agreed that statistics cited in the plan should go beyond reciting the numbers that are already in circulation; however, the question remains as to whether more reliable sources for this number exist.
  • A comment was made that this section should emphasize what these numbers mean in regard to the different areas of the state and the different cultures represented.
• Issues and Recommendations
  • A question was asked about how "hospice care" for dementia is defined. A Council member clarified that individuals with Functional Assessment scores of = 6 can receive hospice care. A physician must sign off on a 6 month order and then can subsequently sign off on 2 more 6 month cycles as needed.
  • The group agreed that "palliative care" should be added to the list of community care options.
  • There was also agreement that "New York Connects" should be referred in the plan.
  • A member recommended that the plan include the importance of providing access information to community members so they know where to go to learn about and obtain different community-based services.
  • The group agreed that law enforcement, emergency services and other similar professionals should be included in the non-medical professional and paraprofessional section of the plan.
  • Continued Medical Education (CME) needs and existing services should be investigated. The idea of creating a web link for CME was shared.
  • Graduate medical education and geriatric training in NYS should be included in the plan.
  • Regarding the screening section, the group briefly discussed the realities likely faced by providers. A question was raised about use of the Mini-Mental Status Examination (MMSE) related to its use for general population screening. It was clarified that the MMSE is not sensitive or reliable enough to warrant a recommendation for general population-based screening.
  • Council members agreed that any screening or practice recommendations should be evidence-based and address issues regarding what happens after screening.
  • Legal and guardianship issues should be addressed in this plan.
  • A member asked how individuals with mental retardation and dementia will be addressed in this plan. There was agreement that special population issues should be addressed, either in this plan or in subsequent plan updates.
  • Mr. Hoffman closed this section of the discussion by asking Council members to provide any further written feedback.
• Mr. Hoffman then circulated a sign-up form for Council members to indicate which plan content areas they are interested in and indicated that content-specific workgroups will be formed to develop the narrative and recommendations related to each area.

Community Forums

• Mr. Hoffman explained that a general list of questions that will be asked at each community forum around the topics of what is working well in the community; what is not working well; and what suggestions community members have to improve services?
• The forums will be open to all community participants.
• Mr. Hoffman reviewed the proposed calendar for community forums which will be revised to accommodate several conflicts.
• Mr. Hoffman emphasized that the plan will reflect information garnered from the community forums.
• The group agreed that the proposed 3 p.m.-7 p.m. timeframe for the forums was reasonable.
• There was consensus that the chosen public locations were fine.
• The need for respite services was raised. Council members suggested that regional support services could make respite available.
• A question was asked about having a forum in Plattsburgh. One of the 8 required forums includes the northeast region and is scheduled for Queensbury in order to accommodate individuals from both the Albany area and North Country. Other options reaching further into the North Country include: holding key informant interviews in the North Country and identifying Plattsburg and other areas of the state that are not reached during 2008 for forums in future years.
• Suggestions were made regarding how to enable those that can't make it to forums the opportunity to submit public comment. This might include creation of an email address and forms for people to use for contributing comments.
• The possibility of linking discussion questions to community-based organizations web sites in each region was also discussed.

Public Comment

• Sarah Vincent from the Northeastern Alzheimer's Association suggested a more effective means of working with ethnic minorities. Rather than trying to recruit ethnic minorities to come to programs, programs should reach out to them to first build the relationship.

Closing

• Mr. Hoffman thanked the group and shared some next steps:
  • Minutes will be typed up and shared with Council members.
  • Council members will be invited to sign up as presenters for community forums held in their areas.
  • Council members will be invited to recruit participants for forums and recommend persons for key informant interviews and expert panel discussions.
  • Information related to logistics and revised dates for the forums will be shared as they are finalized.

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