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Dementia state plan and innovations in caregiver support and dementia care

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Dementia state plan and innovations in caregiver support and dementia care

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Dementia state plan and innovations in caregiver support and dementia care

  1. 1. VIRGINIA’S DEMENTIA STATE PLAN Ms. Courtney Tierney, MSW Director Prince William County Department of Social Services Dr. Patricia Slattum Director, Geriatric Pharmacotherapy Program Virginia Commonwealth University
  2. 2. The Alzheimer’s Disease and Related Disorders Commission Established in 1982 by the Virginia General Assembly § 51.5-154 of the Code of Virginia 15 Members; Quarterly Meetings Advises the Governor and General Assembly on policy, funding, regulatory and other issues
  3. 3. Duties and Powers 1 • Examine the needs and ways that state government can most effectively and efficiently assist in meeting those needs; 2 • Develop and promote strategies to encourage brain health and reduce cognitive decline; 3 • Advise the Governor and General Assembly; 4 • Develop the Commonwealth's plan for meeting the needs; 5 • Submit annual reports on activities to the Governor, General Assembly, and DARS; and 6 • Establish priorities for programs among state agencies and criteria to evaluate these programs.
  4. 4. Work Groups Training Data & Research Coordinated CareLegislative
  5. 5. Timeline: Dementia State Plan 2009-2010 • Review other state plans • Five public listening sessions + comments received2010-2011 • Drafted DSP • Public listening sessions + comments received Dec 2011 • Publication of the 2011-2015 DSP 2014-2015 • Drafted Update to DSP • Public listening sessions + comments receivedOctober 2015 • Publication of 2015-2019 DSP
  6. 6. Goal 1 • Coordinate Quality Dementia Services in the Commonwealth to Ensure Dementia Capability Goal 2 • Use Dementia Related Data to Improve Public Health Outcomes Goal 3 • Increase Awareness and Create Dementia-Specific Training Goal 4 • Provide Access to Quality Coordinated Care for Individuals with Dementia in the Most Integrated Setting Goal 5 • Expand Resources for Dementia-Specific Translational Research and Evidence-Based Practices
  7. 7. Goal One: 
 Tracking Progress OBJECTIVES ACTIONS A. Create a dementia services coordinator 1. Approved; DSC started on July 25, 2013 B. Expand availability and access of dementia capable Medicaid and other state-level services 1. 2015: Modified DMAS Alzheimer’s Assisted Living Waiver for eligibility 2. 2014: Increased public guardianship funding by $599,700 3. 2014: Amended code for ombudsman’s access to records 4. 2013: DARS receives Lifespan Respite Voucher Grant 5. 2013 GA Funding Increases or Restorations: a. Auxiliary Grant by 3% b. Medicaid adult day rates (about $10/unit increase) c. Medicaid LTC services in FY 2014 to elderly and disabled individuals with incomes up to 300% of SSI payment level C. Review all state-funded services to ensure dementia-capable approaches and policies based on principles derived from the person- centered care and culture change movements 1. 2014 Dementia care best practices report prepared and disseminated on AlzPossible Coordinate Quality Dementia Services in the Commonwealth to Ensure Dementia Capability
  8. 8. Goal One: 
 Next Steps OBJECTIVES ACTIONS A. Support and maintain a dementia services coordinator Ongoing B. Expand availability and access of dementia capable Medicaid and other state-level services 1. ADSSP grant to advance dementia capability of the aging and disability resource network and provide caregiver support 2. Support workgroup efforts to modify or replace the AAL waiver C. Review all state-funded services to ensure dementia-capable approaches and policies based on principles derived from the person- centered care and culture change movement 1. Commission and DSC are continuing to monitor and disseminate best practices Coordinate Quality Dementia Services in the Commonwealth to Ensure Dementia Capability
  9. 9. Goal Two:
 Tracking Progress OBJECTIVES ACTIONS A. Collect and monitor data related to dementia's impact on the people of the Commonwealth 1. Collected and analyzed data available from multiple state and federal agencies and made available on AlzPossible 2. 2012 and 2013: BRFSS (through VDH) includes Cognitive Impairment Module B. Collaborate with related public health efforts and encourage possible risk-reduction strategies 1. Applied for grant funding to connect persons with early stage dementia and their caregivers to chronic disease self-management education Use Dementia Related Data to Improve Public Health Outcomes
  10. 10. Goal Two:
 Next Steps Use Dementia Related Data to Improve Public Health Outcomes OBJECTIVES ACTIONS A. Collect and monitor data related to dementia's impact on the people of the Commonwealth 1. Review 2015 BRFSS data when available 2. Developing plan to regularly update data reporting B. Collaborate with related public health efforts to encourage possible risk-reduction strategies 1. Continue pursuing funding for public health-related efforts
  11. 11. Goal Three:
 Tracking Progress OBJECTIVES ACTIONS A. Provide standardized dementia specific training to individuals in the health-related fields and require demonstrated competency 1. 2015: ADSSP grant obtained to train options counselors, care transitions coaches and information and referral specialists 2. 2012-2013: CMS launches initiative to reduce antipsychotic medications in residents with dementia (Hand in Hand Toolkit given to all certified NFs) 3. 2012-2016: VCOA Virginia Geriatric Education Center continues with trainings under HRSA grant 4. 2011-2015: 25 webinars on dementia-related topics for over 2,000 formal and informal caregivers on AlzPossible B. Provide dementia specific training to professional first responders (police, fire, EMS and Search & Rescue personnel), financial services personnel, and the legal profession 1. 2016: DCJS partnering with IACP to provide 5 one-day trainings for 250 first responders with $50,000 ongoing funding 2. 2010: Commission successfully advocates for the restoration of funding for First Responders Training for 2011 C. Support caregivers, family members and individuals with dementia by providing educational information about dementia and available resources and services 1. 2011-2015: Continued maintenance of the AlzPossible/VACAPI website and platform 2. 2011-2015: Continued partnership with Alzheimer’s Association Chapters and AAAs Increase Awareness and Create Dementia Specific Training
  12. 12. Goal Three:
 Next Steps OBJECTIVES ACTIONS A. Provide standardized dementia specific training to individuals in the health-related fields and require demonstrated competency 1. Support increasing hours for dementia specific-training in Adult Day Centers 2. Promote trainings offered by other entities 3. Long-Term: possible grant funding for trainings 4. Support micro-learning initiative at Riverside funded by CMP B. Provide dementia specific training to professional first responders (police, fire, EMS and Search & Rescue personnel), financial services personnel, and the legal profession 1. Continue partnership to provide First Responder trainings in Virginia annually C. Support caregivers, family members and individuals with dementia by providing educational information about dementia and available resources and services 1. Ongoing: Maintain the AlzPossible/VACAPI website and platform 2. Ongoing: Partner with Alzheimer’s Association Chapters and AAAs 3. 2019: Complete Dementia State Plan Update and public roll out Increase Awareness and Create Dementia Specific Training
  13. 13. Goal Four:
 Tracking Progress OBJECTIVES ACTIONS A. Create a state-wide network of interdisciplinary memory assessment centers 1. Piloting coordinated care model at UVA using grant funding B. Provide a system of services that are integrated, coordinated and diverse to meet the varied needs of individuals with dementia and caregivers during the disease trajectory 1. Promoting coordinated care model 2. 2016 Report to General Assembly on outcomes of pilot C. Identify needed supports for informal and family caregivers and coordinate them to ensure positive caregiving experiences Provide Access to Quality Coordinated Care for Individuals with Dementia in the Most Integrated Settings
  14. 14. Goal Four:
 Next Steps OBJECTIVES ACTIONS A. Create a state-wide network of interdisciplinary memory assessment centers 1. Obtain funding to replicate memory assessment centers B. Provide a system of services that are integrated, coordinated and diverse to meet the varied needs of individuals with dementia and caregivers during the disease trajectory 1. Continue monitoring best practices and identify opportunities to enhance current efforts C. Identify needed supports for informal and family caregivers and coordinate them to ensure positive caregiving experiences 1. Pursuing grant funding to expand the FAMILIES program Provide Access to Quality Coordinated Care for Individuals with Dementia in the Most Integrated Settings
  15. 15. Goal Five:
 Tracking Progress OBJECTIVES ACTIONS A. Increase funding for the ARDRAF 1. 2013: GA provides ARDRAF & Palliative Care Program an increase of $175,000, with $125,000 going to ARDRAF B. Provide support to researchers across the Commonwealth through data sources and networking opportunities 1. 2011-2016: AlzPossible platform posts information on ARDRAF applications and deadlines C. Promote research participation in Virginia 1. 2015: Amended state code to clarify language around informed consent for persons with dementia in research 2. 2012: Commission promotes Alzheimer’s Association Trial Match Program on AlzPossible Expand Resources for Dementia Specific Translational Research and Evidence-Based Practices
  16. 16. Goal Five:
 Next Steps OBJECTIVES ACTIONS A. Support ARDRAF 1. Continue to partner and collaborate with ARDRAF administration, including coordinate goals with ARDRAF B. Provide support to researchers and interested stakeholders across the Commonwealth through data sources and networking opportunities 1. Expand the use of AlzPossible to provide data and useful networking opportunities for researchers in Virginia C. Promote the advancement of translational research, evidence- based practices and research participation in Virginia 1. Long-Term: DSC to review and collect information on evidence-based practices and cutting-edge research for dementia care and treatment Expand Resources for Dementia Specific Translational Research and Evidence-Based Practices
  17. 17. RESOURCES Dementia State Plan http://alzpossible.org/dementia-state-plan/ Webinars http://alzpossible.org/webinars-2/ Links http://alzpossible.org/tools/links/ Research Support http://alzpossible.org/tools/links/ VA Research Funding http://alzpossible.org/ardraf-reports/ Data & Data Sets http://alzpossible.org/tools/data/ Memory Assessment Centers http://alzpossible.org/tools/memory-centers/ Elder Abuse http://alzpossible.org/tools/elder-abuse/ Best Practices Report http://alzpossible.org/tools/best-practices-report/
  18. 18. Short Question and Answer Session
  19. 19. VIRGINIA’S INNOVATIONS IN CAREGIVER SUPPORT AND DEMENTIA CARE
  20. 20. Dr. Christine Jensen Director, Health Services Research Riverside Center for Excellence in Aging and Lifelong Health IMPLEMENTING THE FAMILIES PROGRAM TO SUPPORT CAREGIVERS
  21. 21. Partners: Funded by:
  22. 22. Dementia in Virginia • Number of persons aged 65+ with Alzheimer’s disease • Percentage of adults 45+ experiencing memory loss or confusion • 11% or 1 in 9 9% are receiving help from family and friends • 452,000 caregivers provide unpaid care for individuals with dementia Alzheimer’s Association, 2015 and BRFSS, 2013 2015 2025 Increase 130,000 190,000 46%
  23. 23. Background • Adapted from the New York University Caregiver Intervention (NYUCI) model • Implemented in Virginia in 2014 • Funding through ACL • Technical assistance through NYU School of Medicine FAMILIES = Family Access to Memory Impairment and Loss Information, Engagement and Supports
  24. 24. Purpose and Overview • Caregiver intervention program via specially certified counselors • Counseling support over 7 sessions • Ease caregiver stress by involving family and friends in 4 of the sessions
  25. 25. Recruitment Partners • Alzheimer’s Association (Central and Western VA, Southeastern VA, and Greater Richmond Chapters) • Peninsula Agency on Aging (Newport News, VA) • Jefferson Area Board on Aging (Charlottesville, VA)
  26. 26. Goals • 120 caregivers to complete the program • To demonstrate the impact in Virginia • To relieve caregiver stress through counseling sessions and family/friend involvement • To prolong independence and time until admittance to nursing home
  27. 27. Target Enrollment Site Year 1 Year 2 Year 3 Total Charlottesville 15 30 30 75 Williamsburg 21 24 30 75 Total 36 54 60 150
  28. 28. Timeline September 2014 August 2017
  29. 29. Outreach • Governor’s Press Release • Support groups • Facebook • Health Fairs • Radio Interviews • PACE Newsletter • Promotion among religious groups • Adult Protective Services • Riverside Health Systems Intranet • Riverside Senior Care Navigators • Alzheimer’s Association Walks • Health Department Distribution List • Health Journal • Local Senior Living Providers
  30. 30. Challenges and Benefits Challenges • Maintaining steady recruitment • Caregiver has difficulty identifying their support network • Family’s willingness to engage • Travel to site • Sandwich generation caregivers Benefits • Participants established a strong rapport with counselor • Participants encouraged other caregivers to enroll • Counselors expanded their knowledge and strategies in dementia care • Grant-funded respite care
  31. 31. “… [it gave me] the opportunity to discuss ‘feelings’ about my situation that I would not normally do.” -Participant 1034 “Made me understand that I was not in this thing alone.” -Participant 1019 Participant Feedback
  32. 32. “This program has been a blessing. Nothing I would change.” -Participant 1041 “Good advice and friendship. A safe, supportive space.” -Participant 1058
  33. 33. Lessons Learned • Translating NYUCI to Virginia • Role of Riverside Senior Care Navigators • Bi-monthly supervisory calls with counselors • Orientation and timely updates for counselors • Significance of Master Tracking Sheet • Supporting data collection
  34. 34. Combined Demographics UVA & Williamsburg Enrolled / Completed • Baseline: 61 people • 6th Session: 34 people • 6 Month: 16 Age: • Mean: 64.7 +SD 10.1 • Range: 44-89 years old Gender 12 males (19.7%) 46 females (75.4%)
  35. 35. Dependent in Basic
  36. 36. Recent Events Anxious Sad/Depressed Comment on Death Irritable
  37. 37. Not Time for Self Meet Other Responsi Strain around Relatve Uncertain What To do Shake Off Blues
  38. 38. Felt Depressed Restless Sleep Felt Sad Wish They Were Dead
  39. 39. Time With Family Treat Yourself Plans for Financial Future Rarely Occassionally Sometmes Frequently Usually
  40. 40. Center for Epidemiologic Studies Depression Scale (CES-D) Mean CES-D Scores • Baseline = 16.23 • 6th Session = 11.84 • 6 Month = 9.83 • Baseline to 6th session: p=.004 • Baseline to 6 month: p=.045
  41. 41. Zarit Burden Interview (Revised) Mean Zarit Scores • Baseline = 9.15 • 6th Session = 7.77 • 6 Month = 6.6 • Baseline to 6 session: p =.037 • Baseline to 6 month: p =.173
  42. 42. Stanford Health Care Utilization Stanford Mean Scores: • Baseline = 3.12 • 6th Session = 3.4 • 6 month = 2.35 Physician Visits • Baseline = 3.25 • 6th Session = 2.95 • 6 month = 2.2 • Baseline to 6 month: p =.051
  43. 43. Caregiver Well-Being Scale (CWBS) “Feeling good about yourself” • Baseline to 6 month: p =.051
  44. 44. Revised Memory and Behavior Checklist (RMBCL) “Doing things that embarrass you” • Baseline to 6 session: p =.051 • Baseline to 6 month: p =.07 “Difficulty concentrating on a task” • Baseline to 6 session: p =.04 • Baseline to 6 month: p=.08 “Asking the same question over and over” • Baseline to 6 session: p=.007 • Baseline to 6 month: p= .006 1st-2nd p =.02
  45. 45. Met Needs Plan on Using Kept PWD in H Access to New Access to New
  46. 46. Learned Coping Mood Improved Health Improve Have More Supp Positve Impact Recommend Pro
  47. 47. Short Question and Answer Session
  48. 48. IMPLEMENTING THE CARE COORDINATION PROGRAM AND EFFECTIVE STRATEGIES PROGRAM Dr. Carol Manning Director, Memory Disorders Clinic University of Virginia
  49. 49. Dementia • There are ~900 million people aged 60 years and over living worldwide • Today: Between 35.6 and 47.5 million people with dementia • 2030: Between 63 and 74.7 million • 2050: Between 114 and 131.5 million
  50. 50. Dementia • U.S. population-based studies: 28% of community-dwelling older adults have MCI • 19% over 65 • 29% over 85 years • Annual conversion rate from MCI to AD is 3%–13% • 1% for the rest of the population • 11% of older adults are living with Alzheimer’s disease and other types of dementia
  51. 51. Dementia • Incidence of dementia increases exponentially with increasing age, doubling every year • 3.9 per 1000 person-years at age 60-64 • A new case of AD is diagnosed about every minute • 2015 : over 9.9 million new cases of dementia each year worldwide • Number of persons over 65 with AD in US will nearly triple from 2014 to 2050 • 5.1 million to a projected 13.8 million
  52. 52. Costs of Dementia • Compared with other long-term care users, PWDs have higher costs of care • Personal care • Supervision • Assistance with ADLs • Costs are expected to increase by 85% by 2030, making dementia the most expensive disease in our society
  53. 53. Caregiving • 65.7 million informal caregivers in the US • Over 90% of older adults with chronic disabilities receive some care support • 2/3 receive only informal care • 43.5 million family members provide informal care for older adults • 15.5 million are caring for a PWD
  54. 54. Caregiving • Approximately 2/3 of caregivers are women • 34% are 65 or older • 41% of caregivers have a household income of $50,000 or less • Over ½ of primary caregivers take care of parents • ~250,000 children and young adults between ages 8 and 18 provide help for a PWD
  55. 55. Caregiving • 17.9 billion hours of unpaid care • Valued at $217.7 billion • ~46 percent of the net value of Walmart sales in 2013 • Nearly 8 times the total revenue of McDonald's in 2013
  56. 56. Caregiving • Nearly 60 percent of dementia caregivers rate the emotional stress of caregiving as high or very high • 40 percent suffer from depression • $9.7 billion in additional health care costs of their own in 2014
  57. 57. Virginia Dementia Specialized Supportive Services Project • A collaborative study designed to address Goals 4 & 5 of the Virginia State Dementia Plan through • Care Coordination Program • Effective Strategies Program Goal 4: Provide access to quality coordinated care for individuals with dementia in the most integrated setting Goal 5: Expand resources for dementia specific translational research and evidence-based practices Overall Goal - Enhance Virginia’s dementia-capability by providing efficient, effective coordination of services and promoting education and well-being to individuals and care partners
  58. 58. Partners: Funded by:
  59. 59. UVA’s Memory and Aging Care Clinic • A model multidisciplinary clinic providing • diagnosis • treatment • care coordination Care team consisting of • neurologists • neuropsychologists • nurse practitioner • social workers • research coordinators • care coordinators
  60. 60. Care Coordination Program (CCP) • A model program of coordinated care for individuals and their primary care partners • Goal – To provide coordination of services, education about dementia, and emotional support to patients with Mild Cognitive Impairment (MCI) or dementia, and care partners • Participants access services • Mainly through University of Virginia’s Memory and Aging Care Clinic (MACC) • Can also be referred from partner agency JABA and outside sources • Through referral from Effective Strategies Program Open to all Virginians with a recent diagnosis of Mild Cognitive Impairment (MCI) or dementia
  61. 61. Care Coordination Program (CCP) • Innovative services aimed at improving the quality of dementia care in Virginia • Care Coordinators help with • Navigating the health system • Education and information about the individual’s diagnosis • Helping individuals and their care partners access services in the community • Discussions about future planning, such as ensuring legal and financial safeguards
  62. 62. Care Coordination Program (CCP) • Innovative services aimed at improving dementia care in Virginia • Unique collaboration between UVA Health System and Jefferson Area Board for Aging (JABA) • Care Coordinators Tracee Jones and George Worthington • Promotes knowledge of community services within MACC and UVA Health System • Enhances cooperation and cross-referrals (e.g., respite care available at JABA’s Adult Day Centers) • Allows for seamless connection between individual and multiple agencies
  63. 63. Effective Strategies Program (ESP) • A model program of education for individuals and their primary care partner • Goals – To educate people with dementia/MCI and care partners about dementia, provide strategies for anticipating and coping with changes, provide emotional support, and aid in the development of a support system • Participants access services • Through referral from participating sites • Through referral from Care Coordination Program
  64. 64. Effective Strategies Program (ESP) • Group educational program for individual and care partner • 20 sessions over 10 weeks • 1 hour interactive presentations followed by ½ hour of socializing • Topics include: - education about dementia and memory - speech, language and memory strategies - exercises - developing and practicing an exercise program - home safety - planning and participating in outside activities - emotional adjustment
  65. 65. Measurable outcomes for CCP & ESP Measured using validated tools • at enrollment and after 12 months in CCP • at start and finish of ESP And satisfaction surveys created specifically for both programs Outcome 1: Individuals and care partners receiving care coordination will feel more supported in their abilities to meet the challenges of dementia as evidenced by (1) Fewer symptoms of depression; (2) More steps taken to prepare for the dementia; and (3) Satisfaction with the Care Coordination Program
 Outcome 2: Participation in the Care Coordination Program will result in decreased use of emergency or unplanned health care 

  66. 66. Measurable outcomes for CCP & ESP Outcome 3: Individuals who participate in the ESP will report (1) Increased understanding of strategies to cope with memory change; and (2) Satisfaction with the ten week program
 Outcome 4: The implementation of the Care Coordination Program and the ESP will provide a new model of support that can be readily replicated through creation of manuals: • Manuals for both programs will facilitate implementation throughout Virginia • Manuals will be created as collaboration between UVA and JABA demonstrating commitment between the groups
  67. 67. Future Replication Manual for state- and nation-wide replication by end of three-year grant • Documented comprehensive training program for Care Coordinators • Using existing on-line materials and in-person training supporting Dementia Capability • AlzPossible (Virginia Alzheimer’s Commission AlzPossible Initiative) webinars and materials • Alzheimer’s Association Education Center webinars and materials • State certification as Options Counselors, training in Person-Centered Care • Recognizing and Reporting Abuse, Neglect and Exploitation of Adults (VDSS) • VICAP Insurance Counselor education • Community networking and outreach to enhance knowledge and awareness of available resources • Fully-developed procedures and best practice for reproducing • Care Coordination Program • Effective Strategies Program
  68. 68. Short Question and Answer Session
  69. 69. Contact us… Carol Manning cm4r@virginia.edu Courtney Tierney ctierney@pwcgov.org Patricia Slattum pwslattu@vcu.edu Christine Jensen cjensen@excellenceinaging.org Please complete the half page survey.

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