WASHINGTON STATE PLAN TO ADDRESS ALZHEIMER S DISEASE AND OTHER DEMENTIAS W4A/SCOA GATHERING BOB LE ROY, EXECUTIVE DIRECTOR ALZHEIMER S ASSOCIATION WASHINGTON STATE CHAPTER OCTOBER 10, 2018
DEMENTIA BY THE NUMBERS WASHINGTON STATE Less than 1/2 of people with dementia have received a diagnosis Less than 1/2 of families and 1/3 of persons with dementia are informed of a diagnosis by providers Less than 10% are referred to an organization like the Alzheimer s Association or AAA for help 110,000 people with dementia 340,000 unpaid family caregivers 3rd leading cause of death 181% increase in the next 25 years
PLAN S 7 GOALS
THE DAC Public-private partnership 68 Stakeholders Persons with dementia Family caregivers Medical providers, clinicians, researchers Legislators DSHS, HCA, DOH Alzheimer s support organizations Subcommittee and Project Team members
HEALTH AND MEDICAL Families report challenges not only in attaining a diagnosis, but with receiving post-diagnostic support, assistance with ongoing care challenges, and referrals. DAC 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 November 15, 2018 Developed position paper on cognitive screening tools for primary care Identified background, tools and guidance Dementia is drastically underdiagnosed.
CLINICAL PROVIDER PRACTICE TOOL
LONG TERM SERVICES & SUPPORTS 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 Created comprehensive yet simple to follow Road Map Online PDF version, print version nearly 40,000 distributed already View online, or download PDF version Print version free at: Dementiaroadmap@dshs.wa.gov
EXPAND EARLY STAGE PROGRAMS Staying Connected for 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
PUBLIC AWARENESS-COMMUNITY READINESS Social stigma and barriers to inclusion can lead to shame, fear and isolation. This means they won t get the help and services needed to help them stay safe and supported in their own homes. Dementia also impacts safety. Families need help to balance independence and safety while they try to keep their loved ones at home. Developed Dementia- Friendly Communities fact sheets Created Safety Info-Kit
2016 2018 LEGISLATIVE ASKS 2016 = $0 2017 = $160,000 for Dedicated Agency Staff 2018 = $5.4 million for: Educational campaign to increase concern and awareness Promote early legal and advance care planning Establish Dementia Care Specialists Increase capacity for early stage dementia services Disseminate best practices to physicians via telemedicine
WHY AGE FRIENDLY? AARP LIVABLE COMMUNITIES 8 Domains of Livability 1. Outdoor spaces and buildings 2. Transportation 3. Housing 4. Social Participation 5. Respect and social inclusion 6. Civic participation and employment 7. Communication and information 8. Community and health services World Health Organization's Age-Friendly Cities and Communities Program
WHY THE DEMENTIA FRIENDLY MOVEMENT? Belief that there s no reason to get a diagnosis Stigma and fear Isolation of person and family Lack of disease knowledge and planning for the future of individuals/families Disconnected efforts and services for people with dementia
THINK DIFFERENTLY ABOUT DEMENTIA WHAT WE CAN DO Recognize benefits of diagnosis - and that early detection is key Create acceptance, hope and empowerment Promote greater connection with others Increase understanding of dementia and services available Increase family engagement in legal, financial and advance care planning Create community supports/collaborations to help individuals live at home for as long as possible
DEMENTIA-FRIENDLY COMMUNITIES Created/disseminate fact sheets https://www.dshs.wa.gov/altsa/stakeholders/alzheimers-stateplan Outreach to libraries, recreation associations, and dementia-friendly forums Survey to explore opportunities for statewide resource sharing and networking Alzheimer s Café Webinar - January 24, 2018 Dementia-Friendly Walking Groups May 24, 2018 MORE SCHEDULED!! Alzheimer s Café Model October 23, 2018; 10-11:30 am Dementia-Friendly Programs: Overcoming Obstacles November 8, 10-11 am
DEMENTIA FRIENDLY COMMUNITIES IN WA Are respected Can participate confidently in their communities Stay connected to their family, friends and neighbors Enjoy meaningful lives, with access to education, recreation, work or volunteer opportunities, cultural enrichment, and more Have a voice in their community Have access to early diagnosis and postdiagnostic resources Have transportation options Have community housing options Can navigate neighborhoods and public spaces
TODAY WHAT S POSSIBLE?! What s been done? What resources are available to help? Where/how to start?
DEMENTIA FRIENDLY COMMUNITIES - MINNESOTA http://actonalz.org/
DEMENTIA FRIENDLY TOOLKIT WISCONSIN Using the Toolkit Shifting our perceptions of dementia Public health as a key partner Dementia s impact Specific strategies for Business sector Community organizations Health sector Public service sector
DEMENTIA FRIENDLY AMERICA http://www.dfamerica.org/about-dfa-1/
COMMUNITY TOOLKIT
DEMENTIA FRIENDLY AMERICA SECTOR GUIDES
DEMENTIA FRIENDLY RESOURCES
Washington
HEALTH SECTOR CONCERNS & RESOURCES 77% of PWD have 3+ additional chronic conditions PWD have greater odds of having potentially avoidable hospitalizations for chronic conditions like diabetes and hypertension PWD fall twice as often as elders without dementia and are at greater risk of injurious falls 2X People with dementia are hospitalized twice as often as people without dementia
HOW OR WHERE TO START? DEMENTIA FRIENDLY TEMPE Arizona s first dementia friendly city Dementia Friendly America Action Team Formed Action Team led by Chamber of Commerce Weekly Memory Café at library where people with dementia and caregivers can meet others Dementia Friends training to educate community on how to support dementia friendly efforts
MOMENTIA - SEATTLE A grassroots movement empowering people living with memory loss and their loved ones to remain connected and active in the community.
TIPS FROM THE MOMENTIA GROUP 1. Listen to people with memory loss/dementia 2. Work with partners in the community 3. Use what you have in your community 4. Go where the energy is 5. Keep it simple
COMMUNITY ASSETS Identify who/what s in your community Partners Organizations Community Spaces Opportunities!!
KEEP IT SIMPLE
COMMUNITY DISCUSSION 1. What issue have you experienced with dementia in your sector? 2. What opportunity do you see for making progress on this challenge?