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Advisory Council July 2015 Meeting Presentation: Alzheimer's Disease Caregiver Support Initiative

Monday, July 27, 2015

Alzheimer's Disease Caregiver Support Initiative (ADCSI)

David Hoffman, Director
Bureau of Community Integration and Alzheimers Disease


  • New York is now home to over 380,000 persons with AD/D, which is projected to grow to 460,000 by 2025.
  • NYS has 1 million unpaid caregivers for persons with Alzheimer’s disease and other dementias (AD/D) that provide 1.1 billion hours of unpaid care with an estimated value of $14 billion.
  • Over 25% of AD/D caregivers provide “constant care” for 40 hours or more a week.
  • Providing care to individuals with AD/D has resulted in an estimated $771 million in higher health care costs for NYS caregivers.
  • Populations disproportionately impacted (women, minorities, people who live alone) are at greater risk for complications.
  • Early planning offers respect to the patient’s wishes and comfort to caregivers.
  • Caregiver support services alleviate caregiver burden, enhance the quality of life for the individual with AD/D and the caregiver, reduces institutional placement, and lowers healthcare costs.
  • We have an opportunity for the first time to use evidence based strategies to support this vulnerable population on a large scale.

Regional Awards

Map of New York that color codes the regions: Western, Finger Lakes, Central, Northeastern, Capital, Hudson Valley, New York City, and Long Island

Alzheimer’s Disease Caregiver Support Initiative

  • A five year initiative to provide a wide range of comprehensive and coordinated evidenced-based caregiver support and respite services within specified geographic regions.

ADCSI Components

  • Statewide Caregiver Project
  • Centers of Excellence for Alzheimers Disease
  • Alzheimer’s Disease Community Assistance Program
  • Caregiver Support for Underserved Populations
  • Project Evaluation

Statewide Caregiver Project Goals

  1. Develop and sustain of evidenced-based support services.
  2. Reduce avoidable ED visits and hospitalizations.
  3. Improve coordination and access to new and existing support services.
  4. Expand and enhance access to respite services.
  5. Improve health and well-being of caregivers and individuals with AD/D.
  6. Limit all unnecessary transitions.
  7. Continue community residence and reduce institutionalization of individuals diagnosed with AD/D.

Who May Apply

  • Statewide, regional, and community not-for-profit organizations
  • Government agencies (i.e. AAAs)
  • Established partnerships of two or more of the types of organizations listed above.

Statewide Caregiver Project Description

Applicants Will :

  1. Provide the following caregiver support services:
    • Care Consultation
    • Family Consultation
    • Support Groups
    • Education and Training Programs
    • Respite
    • One or more additional allowable caregiver service(s)
  2. Be required to collaborate with community-based organizations
  3. Conduct a thorough evaluation of their project and program’s effectiveness.

Statewide Caregiver Project Disbursement of Funds

  • A total of $15 million per year will be disbursed among either one statewide or ten regional entities across NYS (three awards in NYC)
  • Each successful applicant will be awarded up to $1.5 million per region per year or $15 million per year for a statewide initiative
  • Five year contract with NYSDOH

Statewide Caregiver Project Contract Dates

  • Applications due: August 4, 2015
  • Contract time period: October 1, 2015 - September 30, 2020

Centers of Excellence for Alzheimer’s Disease (CEAD)

  • Since 1988, NYSDOH has funded nine Alzheimer’s Disease Assistance Centers (ADACs).
  • They have been providing comprehensive and coordinated medical and support services to individuals with AD/D, their families, and caregivers.
  • They will now be rebranded as Centers of Excellence for Alzheimer’s Disease (CEAD).

CEAD Project Goals

  1. Provide education and training to health care providers and students in health care professions promoting the benefits of early diagnosis and treatment of individuals with AD/D, utilization of available treatments, and enrollment in clinical trials.
  2. Diagnose AD/D and co-morbid conditions.
  3. Prescribe effective treatment of AD/D, including palliative care and appropriate non-pharmacological treatment of behavioral symptoms.
  4. Provide follow-up care on at least an annual basis.
  5. Utilize an interdisciplinary team approach for patient diagnosis and care; patient, family, and caregiver support; and community linkages.
  6. Offer care management services (including needs assessment, care planning, care coordination, counseling, consultation and referrals) through close working relationships with service providers within a designated geographic area to individuals with AD/D and their caregivers.
  7. Expand and enhance the health care system’s capability to diagnose and treat individuals with AD/D.
  8. Provide technical assistance to health care and other service providers in the designated service area.
  9. Promote benefits of participation in research (e.g., clinical trials, studies, and patient registries.)

CEAD Who May Apply

  • NYS not-for-profit major teaching hospitals with a demonstrated capacity for the provision of in-service and pre-service training for primary care providers, specialty care providers, medical students, and other health professionals.

CEAD Project Description

  1. Disease diagnosis and assessment
  2. Patient management and care
  3. Medical Provider training
  4. Collaboration with community organizations
  5. Promotion of public awareness of Alzheimer’s disease
  6. Project evaluation

CEAD Disbursement of Funds

  • A total amount of $4,700,000 per year will be available to support up to 10 regional CEADs (3 awards in NYC)
  • Five year contract with NYSDOH

CEAD Contract Dates

  • Applications due: August 18, 2015
  • Contract time period: October 1, 2015-September 30, 2020

Alzheimers Disease Community Assistance Program

  • Authorized by Public Health Law
  • Statewide contract with Coalition of Alzheimers Association Chapters
  • Seven Chapters cover services statewide
  • Increased value from $1 million annually to $5 million

Core Services:

  • Care Planning and Consultation
  • Caregiver Training
  • Support Groups
  • 24-hour helpline
  • Community Awareness
  • Increase Training for Important Constituencies

Caregiver Support for Underserved Populations

  • Competition for 15 awards for up to $100,000 ($1.5 million total)
  • Focus on traditionally underserved communities
    • Could be underserved based on geography, culture, language, etc.
  • Competition planned for late Summer 2015

Project Evaluation

  • Partnership with UAlbany School of Public Health
  • Collaborative evaluation includes all contractors
  • Measurement of common elements
  • Medicaid impact periodically assessed
  • Periodic reports to the field