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Advisory Council April 2014 Meeting Presentation: New York State AD Program

Tuesday, April 29, 2014

New York State Alzheimers Disease Program

David Hoffman
Bureau Director, Division of Long Term Care
Office of Health Insurance Programs

Enormous Public Health Implications

  • 2/3rds of people with dementia live in the community.
  • In 2011 there were an estimated 960,000 caregivers in New York.
  • The health and wellbeing of people with dementia and their caregivers is at risk.

Alzheimer's Association, (2013). 2013 Alzheimer's disease facts and figures. Alzheimer's and Dementia: The Journal of the Alzheimer's Association, 9, 208-245.

Caregivers

  • Caregiving for individuals with Alzheimer's disease is an emotionally and physically demanding job
  • Stress associated with caregiving can lead to health problems for the caregiver
  • Caregivers' often experience financial stress and employment problems
  • The number of caregivers will continue to increase as the number of individuals with Alzheimer's increases
  • Projected numbers will overwhelm current system of services

In New York State...

  • There are an estimated 320,000 individuals with Alzheimer's disease.
  • By 2030 this number is expected to increase to 350,000.
  • This number is likely to be underrepresented due to the lack of early detection and underreporting on death certificates.

Cognitive Impairment in NYS Nursing Homes

  • In 2009 there were 232,754 total nursing home residents
    • 40% had moderate to severe cognitive impairment
    • 25% had very mild to mild cognitive impairment
    • 35% had no identified cognitive impairment
  • In 2011 the average cost of nursing homes were:
    • $248 per day/$90,520 per year for private rooms
    • $222 per day/81,030 per year for semi-private rooms
    • Costs were sometimes higher for residents with Alzheimer's disease

NYSDOH Response

  • Long and proactive history of addressing challenges of Alzheimer's disease
  • State DOH funds community-based programs that fill gaps in the healthcare and support systems
  • Fund interventions crucial to effective disease management

Program History

  • Governor Mario Cuomo convenes Blue Ribbon Panel
  • 1987 -- Legislation created Alzhiemers Disease Assistance Centers (Article 27 of the PHL)
  • 1988 -- First contacts funded (ADACs)
  • 1990s -- Community Service Programs
  • 2000 -- NYS Office for Aging (SOFA) Collaboration
  • 2007 -- NYS Coordinating Council for Services Related to Alzheimer's Disease and Other Related Dementias
  • 2008 -- Alzheimer's Community Assistance Program -- statewide effort
  • 2009 -- First report released by the NYS Coordinating Council for Services Related to Alzheimer's Disease and Other Related Dementias
  • 2011 -- 2nd Report released
  • 2013 -- 3rd Report released

Goals of the Alzheimer's Disease Program

  • Use evidence-based strategies to ameliorate the impact of Alzheimer's disease on individuals and families
  • Delay the institutionalization of individuals with Alzheimer's disease
  • Maintain the quality of life of both the Alzheimer's disease patient and the patient's family members

Evidence Base of Program

  • A study by Mittleman (2006) showed that nonpharmacological interventions for caregivers can delay nursing home placement.
    • The intervention in this study is called the “NYU Intervention”
  • Showed that with a similar array of services institutional placement can be postponed by 557 days.

Mittelman, M. S., Haley, W. E. Clay, O. J. & Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer's disease. Neurology, 67, 1592-1599.

NYSDOH Alzheimer's Disease Program Components

  • Alzheimer's Disease Assistance Centers (ADACs)
    • 9 funded in NYS
    • Centers for Excellence that provide diagnosis and assessment, patient management and care, provide training, education and consultation
    • Clearinghouse of information on Alzheimer's disease
    • Most affiliated with universities and hospitals
  • Alzheimer's Community Assistance Programs (AlzCAP)
    • Statewide services provided through the 7 NYS Alzheimer's Association Chapters
    • Provide community-based support services for patients and family members:
      • Support groups (primarily for family members and caregivers)
      • 24-hour helpline
      • Training and education of family and non-family caregivers, volunteers, and home health care personnel
      • Volunteer respite services including provider training
      • Care consultation and outreach

ADAC Locations & Regions Served

NYS Coordinating Council for Services Related to Alzheimer's Disease and Other Dementias

  • Reports released in 2009, 2011 and 2013
  • Periodic council meetings
  • Hours of research and drafting
  • Input from consumers, providers, advocates
  • Input from several state agencies
  • Visit the following link to find NYS reports on Alzheimer's disease

Coordination is Key

  • Department of Health (Medicaid, LTC, Public Health, Health Facilities)
  • State Office for Aging (Community Supports)
  • State Education Department (Office of Professions)
  • Office of Mental Health (Community Services)
  • Office for Persons with Developmental Disabilities (Community and Other Supports)
  • Office for Temporary and Disability Assistance (Support Services, Adult Protective Services)
  • Providers and Advocates

Recent Actions

  • Coordination with State Office for Aging Dementia Capability Project
  • Dear Colleague Letter to all physicians on early detection
  • Briefing for Governor's Staff on Alzheimer's Disease Issues
  • Convened meetings of State Health Commissioner and Director of State Office for Aging
  • Updated State Web Pages for Alzheimer's Disease and Other Dementias
  • Exploring collaboration with LTC rebalancing initiatives (MFP, FIDA, BIP)

Coming Next

  • Develop more health promotion messages for seniors
  • ADACs to develop curricula for pre-service and in-service training for health professionals
  • Revisit training opportunities for direct care workforce
  • Expand awareness on advance care planning
  • Focus on early detection
  • Promote Reaching Older Americans with Research (ROAR)
  • Focused demonstration project to impact disparities

Conclusion

  • We have a long way to go
  • Public/Private Partnerships must be part of the solution
  • Data; workforce; caregiver training and support are essential
  • Public awareness can lead to quality
  • The clinical/community linkage is key
  • Advance planning is required for quality
Files
Mtg12-Slides9.pdf (pdf, 1 MB)