Dementia state plan and innovations in caregiver support and dementia care

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. 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. 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. Work Groups
Training Data & Research
Coordinated CareLegislative

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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Short Question and
Answer Session

19. VIRGINIA’S INNOVATIONS IN
CAREGIVER SUPPORT AND
DEMENTIA CARE

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. Partners:
Funded by:

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. 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. 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. 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. 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. 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. Timeline
September 2014 August 2017

30. 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

31. 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

32. “… [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

33. “This program has been a blessing. Nothing I would
change.”
-Participant 1041
“Good advice and friendship. A safe, supportive
space.”
-Participant 1058

34. 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

35. 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%)

36. Dependent in Basic

37. Recent Events
Anxious
Sad/Depressed
Comment on Death
Irritable

38. Not Time for Self
Meet Other Responsi
Strain around Relatve
Uncertain What To do
Shake Off Blues

39. Felt Depressed
Restless Sleep
Felt Sad
Wish They Were Dead

40. Time With Family Treat Yourself
Plans for Financial
Future
Rarely
Occassionally
Sometmes
Frequently
Usually

41. 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

42. 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

43. 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

44. Caregiver Well-Being Scale (CWBS)
“Feeling good about yourself”
• Baseline to 6 month: p =.051

45. 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

47. Met Needs
Plan on Using
Kept PWD in H
Access to New
Access to New

49. Learned Coping
Mood Improved
Health Improve
Have More Supp
Positve Impact
Recommend Pro

50. Short Question and
Answer Session

51. IMPLEMENTING THE CARE
COORDINATION PROGRAM AND
EFFECTIVE STRATEGIES PROGRAM
Dr. Carol Manning
Director, Memory Disorders Clinic
University of Virginia

52. 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

53. 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

54. 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

55. 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

56. 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

57. 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

58. 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

59. 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

60. 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

61. Partners:
Funded by:

62. 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

63. 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

64. 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

65. 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

66. 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

67. 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

68. 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

69. 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

70. 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

71. Short Question and
Answer Session

72. Contact us…
Carol Manning
cm4r@virginia.edu
Courtney Tierney
ctierney@pwcgov.org
Patricia Slattum
pwslattu@vcu.edu
Christine Jensen
cjensen@excellenceinaging.org
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