University of Hawaii Center on Aging

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Grantees carrying out projects under government sponsorship are encouraged to express freely their findings and conclusions.

1 University of Hawaii Center on Aging The series is supported in part by a cooperative agreement No. 90AL from the Administration on Aging, Administration for Community Living, U.S. Department of Health and Human Services. Grantees carrying out projects under government sponsorship are encouraged to express freely their findings and conclusions. Therefore, points of view or opinions do not necessarily represent official AoA, ACL, or DHHS policy. The grant was awarded to University of Hawaii Center on Aging for the Alzheimer s Disease Initiative: Specialized Supportive Services Program 1

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3 Creating Dementia- Friendly Communities Presented by Terry Barclay, Phd, LP and Michelle Barclay, MA ACT on Alzheimer s & The Barclay Group, LLC 3

4 What is dementia? A brain disorder that causes a decline in memory and intellectual functioning from some previously higher level of functioning severe enough to interfere with everyday life Dementia is NOT normal aging! 4

5 Dementia Causes Lewy Body Dementia FTD Alzheimer s disease: 60-80% Includes mixed AD + VD Lewy Body Dementia: 10-25% Parkinson spectrum Vascular Dementia Alzheimer s Disease Vascular Dementia: 6-10% Stroke related Frontotemporal Dementia: 2-5% Personality or language disturbance 5

6 Alzheimer s Disease (AD) Scope of the problem 5.3M Americans with AD in 2015 Growing epidemic expected to impact 13.8M Americans by 2050 and consume 1.1 trillion in healthcare spending Almost 2/3 are women (longer life expectancy) 6

7 Dementia Facts Of those with Alzheimer s disease: higher risk: Older African Americans (2x as whites) Older Hispanics and Latinos (1.5x as whites)

8 Impact on Families

9 Impact on Community

10 Having dementia is very tough, but having a city who excludes dementia that is really tough. - Bart Deltour Foton Dementia Charity Bruges, Belgium Alzheimer s Disease International: Dementia-Friendly Communities: A Global Overview 10

WHO: Age-Friendly Communities An age-friendly city optimizes opportunities for health, participation and security by adapting it s structures and services

11 WHO: Age-Friendly Communities An age-friendly city optimizes opportunities for health, participation and security by adapting it s structures and services to be accessible and inclusive of older people with varying needs and capacities. 11

12 Age-Friendly Communities 12

13 What is a Dementia Friendly Community? All sectors are informed, safe and respectful and foster quality of life (age vs. dementia friendly)

14 Dementia is a global issue. Dementia-Friendly Communities: UK Scotland Dementia Friends Australia France Belgium Italy Austria Germany The Netherlands Japan India UNITED STATES 14

15 Minnesota: ACT on Alzheimer s 15

16 What is ACT on Alzheimer s? statewide ORGANIZATIONS INDIVIDUALS volunteer driven collaborative IMPACTS OF ALZHEIMER S BUDGETARY SOCIAL PERSONAL

17 ACT Common Agenda 5 shared goals with a health equity perspective

18 Sector-Specific Dementia-Friendly Practices Businesses Community-based supports Faith communities Health care community Legal and financial services Local government Residential settings

DF Health Care Timely identification and diagnosis of dementia, educate patients and caregivers and refer to community resources Actions: Training on dementia

19 DF Health Care Timely identification and diagnosis of dementia, educate patients and caregivers and refer to community resources Actions: Training on dementia Administer objective assessments Use ACT on Alzheimer s clinical practice tools Offer disease specific information and information on community services and supports

DF Community-Based Supports Supports that help people maintain independence and quality of life Actions: Service providers use best practices in

20 DF Community-Based Supports Supports that help people maintain independence and quality of life Actions: Service providers use best practices in serving people with dementia Dementia specific education, counseling and support Meaningful engagement activities: memory café, art, music, dance

DF Financial/Legal Services Legal and financial advisors may be the first to identify cognitive decline Actions: Education on recognizing dementia

21 DF Financial/Legal Services Legal and financial advisors may be the first to identify cognitive decline Actions: Education on recognizing dementia Webinars on assessing client capacity, elder abuse, neglect and exploitation Know the local services to help people with dementia and their caregivers

DF Faith Community Safe, supportive and welcoming environment for people with dementia Actions: Offer dementia training to clergy or staff Support the person with dementia: offer short devotions,

22 DF Faith Community Safe, supportive and welcoming environment for people with dementia Actions: Offer dementia training to clergy or staff Support the person with dementia: offer short devotions, encourage people to talk openly about dementia and participate in services as appropriate Support the caregiver: recognize signs of caregiver stress and refer to appropriate resources Create a dementia friendly environment

DF Residential/Memory Loss Services Residential settings that serve and support people with dementia Actions: Identify champions for maintaining

23 DF Residential/Memory Loss Services Residential settings that serve and support people with dementia Actions: Identify champions for maintaining dementia readiness across the organization Educate and train all staff about dementia Manage dementia across the continuum using best care practices

DF Businesses Businesses that are meeting the needs of customers and employees Actions: Educate staff on dementia and effective communication skills

24 DF Businesses Businesses that are meeting the needs of customers and employees Actions: Educate staff on dementia and effective communication skills Become aware of local services to help people with dementia Ensure the environment is dementia friendly Offer support to employees who are caregivers

25 DF Local Government Dementia awareness in community planning and emergency response Actions: Provide dementia training to city/county staff who work with the public, emergency responders, and law enforcement

Equip Communities & Raise Awareness Develop a Community Toolkit to foster dementia-friendly communities Support community implementation of the

26 Equip Communities & Raise Awareness Develop a Community Toolkit to foster dementia-friendly communities Support community implementation of the toolkit Funders: Blue Plus (HMO affiliate of Blue Cross Blue Shield of Minnesota); Medica Foundation; Greater Twin Cities United Way

implications for your community. Then, form an Action Team. 2.

27 Community Toolkit Phases 1. Convene key community leaders and members to understand dementia and its implications for your community. Then, form an Action Team. 2. Engage key leaders to assess current strengths and gaps in your community using a comprehensive engagement tool. 3. Analyze your community needs and determine the issues stakeholders are motivated to act on; then set community goals. 4. ACT together to establish implementation plans for your goals and identify ways to measure progress.

28 Convene Phase: The Action Team

29 Engage Phase: Actions Needed Sectors: Define your community Determine who to survey and who will survey Target sectors Include diverse populations Adult day Caregiver support providers Employers/businesses Health providers Legal and financial planners Local government Residential settings Social service agencies Transportation Faith communities

30 Analyze Phase: Planning for Action Look for: High Priority, Low Activity areas of need

31 ACT Together Dementia Friends awareness and education program Business, healthcare, government, law enforcement, youth, first responder and faith trainings New caregiver supports, respite and trainings New meaningful engagement opportunities for persons living with dementia (e.g. arts)

Spotlight Program: Dementia Friends Dementia Friends Scotland: www.

32 Spotlight Program: Dementia Friends Dementia Friends Scotland: Dementia Friends UK:

Dementia Friends: MN Pilot www.actonalz.

33 Dementia Friends: MN Pilot dementia-friends 33 COMING SOON: Dementia Friends USA

MN Communities in Action 34 Action Communities Awareness and education: Dementia Friends Caregiver supports New, meaningful community engagement opportunities (arts,

34 MN Communities in Action 34 Action Communities Awareness and education: Dementia Friends Caregiver supports New, meaningful community engagement opportunities (arts, music) Cross-Sector Engagement and Training: business, government, law enforcement, youth, first responder and faith Health system adoption of optimal dementia care practices

35 Community: Twin Cities Jewish Clergy training Caregiver panel Presentation on dementia-related behaviors Communication tips Keeping the Spirit Alive community gathering Film series: Love, Loss, Dementia and Family Relationships Teen training Dementia Friends

36 Community: Cambridge Private screening of l ll be Me Dementia education for physicians Guest editorials in local paper Project lifesaver in partnership with Isanti County Sheriff department

37 Community: Walker Dementia-friendly businesses: Education on AD Communication techniques Community resources

38 DFA Communities Early Adopters Committing/Preparing Inquiring Minnesota Boston Montgomery County West Virginia Prince Georges County, MD Santa Clara County, CA Denver, CO Tempe, AZ

39 Desired Impact: Is There a Finish Line? Community Capability: Adoption of dementia friendly practices within and across all community sectors (e.g., faith, business, government, health care) Person with Dementia Well-Being Care Partner Efficacy Care Partner Support and Family Health System Capability: Adoption of optimal dementia care and supports in health, long term care and community services

40 Getting Started: Moving Toward a Dementia- Friendly Hawaii 40

41 Kottler s 8-Step Change Model 1. Create a sense of urgency 2. Form a powerful coalition 3. Create a vision for change 4. Communicate the vision 5. Remove obstacles & empower action 6. Create short-term wins 7. Build on the change 8. Anchor changes in the community culture 41

42 One of the biggest challenges in creating dementia-friendly communities is getting the public talking about dementia. Alzheimer s Disease International: Dementia-Friendly Communities: A Global Overview 42

43 Next Steps: Assessing Readiness Does your community have an influencer/champion who is willing to endorse and kick off an action team? Has your community shown an interest in dementia or other community health initiatives in the past? Does your community have an existing coalition or an organization that might serve as a sponsor or convener for building an action team? Do you anticipate that your team would be willing to commit to a month community effort? Would your action team be prepared to collect information regarding progress on established goals?

44 Community Commitment Secure Champion Organization and Coordination Assure Connections b/n Health System, Community, and Public Sector Partners Foster Adoption of Dementia Friendly Practices and Change Goals Track Progress Call to Action: Establishing Communities Implement Community Tool Kit Process if Appropriate

45 Embed Health Care Tools 45

46 It s a matter of the whole community coming together around a unified idea of what Alzheimer s is and how it impacts individuals, families and the entire community. This is where we make a difference. Once you understand, great things can happen. - ACT Cambridge Leader 46

47 Are you ready, Hawaii? Let s do this!! 47

Contact for Questions Learn more at www.actonalz.

org View latest happenings by visiting the ACT

48 Contact for Questions Learn more at Sign up for the ACT e-news at: View latest happenings by visiting the ACT website, including In the News, our Facebook page and Twitter.

49 Contact for Questions Contacts: Olivia

50 University of Hawaii Center on Aging The series is supported in part by a cooperative agreement No. 90AL from the Administration on Aging, Administration for Community Living, U.S. Department of Health and Human Services. Grantees carrying out projects under government sponsorship are encouraged to express freely their findings and conclusions. Therefore, points of view or opinions do not necessarily represent official AoA, ACL, or DHHS policy. The grant was awarded to University of Hawaii Center on Aging for the Alzheimer s Disease Initiative: Specialized Supportive Services Program 50

9/21/2015. ACT on Alzheimer s: A Model for Transforming Dementia Awareness and Support in Communities. Genesis of ACT on Alzheimer s

9/21/2015. ACT on Alzheimer s: A Model for Transforming Dementia Awareness and Support in Communities. Genesis of ACT on Alzheimer s ACT on Alzheimer s: A Model for Transforming Dementia Awareness and Support in Communities www.actonalz.org 2015 Genesis of ACT on Alzheimer s 2009: Legislative mandate for Alzheimer s Disease Working