TALKING DEMENTIA: STRATEGIES TO ADVANCE EDUCATION, SERVICES AND DEMENTIA-FRIENDLY COMMUNITIES

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1 TALKING DEMENTIA: STRATEGIES TO ADVANCE EDUCATION, SERVICES AND DEMENTIA-FRIENDLY COMMUNITIES W4A ANNUAL STAFF DEVELOPMENT CONFERENCE LYNNE KORTE, AGING AND LONG TERM SUPPORT ADMINISTRATION JUNE 7, 2018

2 DEMENTIA BY THE NUMBERS WASHINGTON STATE Alzheimer s disease is 3 rd leading cause of death 110,000 people currently living with dementia 324,000 unpaid family caregivers 181% increase in next 25 years

3 DEMENTIA MORE ON THE NUMBERS Significantly underdiagnosed Often not disclosed by providers to patient/family Less than 10% are referred to organizations like the Alzheimer s Association or the Area Agencies on Aging Less than 50% Receive a formal diagnosis

4 PLAN S 7 GOALS 1. Increase public awareness 2. Prepare communities 3. Ensure well-being and safety 4. Ensure access to family caregiver supports 5. Identify dementia early and provide evidencebased health care 6. Ensure long-term services and supports in setting of choice 7. Promote innovation and research related to causes and care

5 ACTIVITIES Next generation group Public-private partnership Dementia Action Collaborative (DAC) Focus - what we can do Heightened collaboration Existing resources Coming together is a beginning; keeping together is progress; working together is success. Edward Everett Hale

6 DAC LEADERSHIP - THREE SUBCOMMITTEES Dementia Action Collaborative Bill Moss, Aging and Long-Term Support Administration Health & Medical Care Kris Rhoads, UW Memory & Brain Wellness Center Long Term Services and Support Bob LeRoy, Alzheimer s Association Public Awareness & Community Readiness Cheryl Townsend-Winter, State Council on Aging 60+ organizations & individuals

7 HEALTH AND MEDICAL Problems Dementia is drastically underdiagnosed. People don t recognize the value of dx, and that early detection is important. Families report challenges not only in attaining a diagnosis, but with post-diagnostic support, assistance with ongoing care challenges, and referrals. ACCOMPLISHMENTS Recommendations 5A1, 5B2 Approached the Bree Collaborative to convene expert panel to establish evidence-based recommendations for primary care Final Report & Recommendations for AD and Other Dementias released Nov 15, 2017 Developed position paper on cognitive screening tools for primary care Identified background, tools and guidance

8 CLINICAL PROVIDER PRACTICE TOOL

9 LONG TERM SUPPORTS AND SERVICES Problems Dementia is a long journey. Families are often unclear what to expect and where to turn. They need a basic, but thorough road map to guide important action steps and to know where to find help along the way. Supports for people in early stages is critical to allow for education, adjustment and planning ACCOMPLISHMENTS Recommendations 4A1 Comprehensive yet simple to follow Road Map View online, or download PDF version Print version - request free at: Dementiaroadmap@dshs.wa.gov 35,000+ print copies distributed

10 EXPAND EARLY STAGE PROGRAMS (Cont d ) ACCOMPLISHMENTS Recommendations 3B1 Staying Connected - Adults with early stage memory loss and their care partner(s) Sponsored webinars & created written guidance for models of support Alzheimer s/memory Cafes Walking Programs

11 DEMENTIA-CAPABLE I & A (Cont d) ACCOMPLISHMENTS Recommendations 4A2 Dementia Capable Systems Grant 5 Area Agencies on Aging Developed training for I & A and FCSP staff Live Dementia-Capable training Online Dementia-Capable training Trialed Staying Connected groups

12 PUBLIC AWARENESS-COMMUNITY READINESS Problems Social stigma can lead to shame, fear and isolation. This means people won t get the help and services needed to help them stay safe and supported in their own homes. Dementia also impacts safety, and becomes barrier to independence. Families need help to balance independence and safety while they try to keep their loved ones at home. ACCOMPLISHMENTS Recommendation 2C1, 3B1 Developed Dementia-Friendly Communities fact sheets Created Safety Info-Kit

13 BRAIN HEALTH MESSAGING (Cont d) ACCOMPLISHMENTS Recommendations 1F1, 2D2 Action Guide connect and empower Asian-American and Pacific Islander communities around dementia Messaging with African American community in Seattle Center for Multicultural Health & local churches DOH Webpage on Alzheimer s/dementia coming in June!

14 COMMUNITY HEALTH WORKER TRAINING (Cont d) ACCOMPLISHMENTS - Recommendation 3A1 Develop content for module on dementia for Community Health Workers (CHWs) Self-paced module available for all CHWs after their core training Warning signs, dementia basics, resources Encourages referrals to AAAs and Alzheimer organizations as resource

15 CURRENT INITIATIVES & FUTURE DIRECTIONS

16 CURRENT INITIATIVES Recommendation 6A1 A win for advocates! Designate a dementia coordinator at ALTSA, DDA, DOH and HCA to improve communication and collaboration related to dementia Legislature approved funding as of July 1, 2018 for part-time positions at each agency to support work of State AD/Dementia Plan These positions will: Identify recommendations in AD Plan that agencies can take on, integrate into own plans Coordinate with each other and DAC Identify high-value recommendations that need add l funding and/or legislation

17 DEMENTIA CAPABLE SYSTEMS GRANT First round of online training with Dementia Capable AAAs underway Integrating online training availability for all AAAs in Relias CLC AD/Dementia page enhancements Sustaining Staying Connected Dementia-capable FCSP developing recommendations and tool kit

18 EXPAND EARLY STAGE PROGRAMMING Foster development of early stage programming Offer webinars and guidance materials to foster dementia-friendly programs Find development materials on the Dementia Action Collaborative webpage: Links to webinars and How-to/Start-up guides for Alzheimer s Café Model Dementia-Friendly Walking Groups

19 LEGAL AND ADVANCE CARE PLANNING DAC Legal and ACP project team Developing toolkit for consumers Clarify what needs to occur, early is better Simplify steps, links to legal documents/tools Training Possibilities - under development Develop consumer video on one or more documents, with Lisa Brodoff, Esq Partner with Washington State Bar Association, Elderlaw Section Develop Continuing Legal Education (CLE) training for attorneys VISION/HOPE if funded; low/pro bono attorneys -StarterKit-Alzheimers-English.pdf

20 DEMENTIA FRIENDS Dementia Friends is a global public awareness and anti-stigma campaign that is changing the way people think, act and talk about dementia. DAC Dementia Friendly team is sponsoring a pilot in 2018 Hosted by UW Memory and Brain Wellness Center Social work student to pilot approaches Team will consider implications for statewide expansion

21 DEMENTIA FRIENDLY COMMUNITIES Disseminating Dementia Friendly Communities Fact Sheets Collaborating with statewide organizations to increase dementiafriendly awareness WA Library Association 2 nd year at conference Recreation YMCA, Recreation Therapy Professionals Association Conference Planting seeds around Dementia-Friendly Communities Pierce County Forum SEALTC Dementia-Friendly Forums in Ellensburg, Walla Walla, Yakima Planning underway for Spokane

22 DEMENTIA FRIENDLY AMERICA

23 COMMUNITY TOOLKIT

24 DEMENTIA FRIENDLY AMERICA SECTOR GUIDES

25 DAC BUDGET REQUEST NEXT BIENNIUM focus on early diagnosis, support and planning Dementia Action Collaborative Chairs with members & advocacy groups Will require support and advocacy during session

26 WHAT CAN YOU DO NOW? 1. Increase awareness around dementia and services available 2. Share DAC s products in your community and networks 3. Build links between public health, health care and longterm care 4. Get on board with dementiafriendly efforts! 5. Advocate with legislature

27 TALK ABOUT DEMENTIA! Share the value of diagnosis - early detection is key! Convey acceptance, hope and empowerment Promote greater connection with others living with dementia and in community Increase understanding of dementia and services available Increase engagement in legal, financial and advance care planning

28 JUNE ALZHEIMER S & BRAIN AWARENESS MONTH Ceremonial proclamation submitted to Governor DAC letter to editor early detection and diagnosis Alzheimer s Association social media campaign Key Messages 10 Ways to Love Your Brain Know the 10 Signs Early detection matters Alzheimer s is complicated, but having a conversation about it doesn t have to be. There are steps you can take with AD to move forward and live your best life

29 LET PEOPLE KNOW HELP IS AVAILABLE NOW! Alzheimer s Association or Community Living Connections/AAAs or Alzheimer s, Dementia and Memory Loss Webpage /alzheimers_and_dementia/index.php

30 MORE INFORMATION ON THE DEMENTIA ACTION COLLABORATIVE & OUR RESOURCES Lynne Korte, Program Manager Aging and Long-Term Support Administration Washington State Alzheimer's Plan