Alzheimer’s and Dementia: Resources You Can Use 2015 ACL/CDC/NIA Webinar Series on Alzheimer’s & Related Dementias September 22, 2015

DISCLOSURE STATEMENTS In compliance with continuing education requirements, all presenters must disclose any financial or other associations with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters as well as any use of unlabeled product(s) or product(s) under investigational use. CDC, our planners, presenters, and their spouses/partners wish to disclose they have no financial interests or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Planners have reviewed content to ensure there is no bias. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use. 2

A collaboration of the Administration for Community Living, the Centers for Disease Control and Prevention and the National Institute on Aging of the National Institutes of Health Welcome to the 4 th Annual Webinar Series on Alzheimer’s & Related Dementias 3

Webinar Series Goals Inform the Aging, Public Health, and Dementia Research Networks about Federal resources to help people with dementia and their families and caregivers Improve coordination of Federal resources Encourage awareness of research participation opportunities 4

2015 Webinar Series Calendar Webinar #2: What’s Happening in Alzheimer’s Research? Wednesday, October 21 Webinar #3: Caregivers Supporting People with Dementia: New Research and Technology Tuesday, November 17 For a more detailed agenda & CEU information, please go to -alzheimers-related-dementias-webinar-series-professionals -alzheimers-related-dementias-webinar-series-professionals Archived webinars ( ) available at: px#resources px#resources 5

Today’s Webinar National Alzheimer’s Project Act/Plan Update Alzheimer’s and Dementia Information and Support Resources – for consumers and families – for caregivers – for professionals Brain Health Research Participation

1.Prevent and Effectively Treat Alzheimer’s Disease by Optimize Care Quality and Efficiency 3.Expand Supports for People with Alzheimer’s Disease and Their Families 4.Enhance Public Awareness and Engagement 5.Track Progress and Drive Improvement 7 National Alzheimer’s Plan Goals

National Alzheimer’s Plan Update 2015 Updated Plan: address-Alzheimer’s-disease update address-Alzheimer’s-disease update NIH “Bypass Budget” and Research Progress: bypass-budget-fy bypass-budget-fy2017 Of note: presentations on FTD, Lewy & Vascular dementias – view at: council-alzheimers-research-care- and-services-meetings#Jul council-alzheimers-research-care- and-services-meetings#Jul2015

Ruth Drew, MS Alzheimer’s Association Resources for Consumers and Families 9

10 Federal Portals

National Alzheimer’s Call Center 24/7 Helpline (800) Alzheimer’s Assn. is grantee of Administration for Community Living National Contact Center partners with Alzheimer’s Association chapters Provide information, support and referrals to local resources 300,000+ calls/year Staffed by dementia care experts and master’s prepared care consultants Bilingual agents and translation line enable calls in 200 languages

Community Resource Finder Comprehensive lists of resources, services and community programs (including ADRC’s, AAA’s) Search by category, proximity, specific needs & preferences Create lists of resources near you resourcefinder.org/ resourcefinder.org/

“I Have Alzheimer’s Disease” Website redesigned with input from Early Stage Advisors Know what to expect Treatments & research Programs & support Overcoming stigma Younger-onset Alzheimer’s Live well alz/i-have-alzheimers- dementia.asp alz/i-have-alzheimers- dementia.asp

NIA Alzheimer’s Disease Education and Referral (ADEAR) Center Focus on latest research- based information on Alz & other dementias Referral to government & organization resources, clinical trials Bilingual (English/Spanish) Information Specialists Free consumer & professional publications Call Center: Mon-Fri, 8:30am-5:00 pm Eastern 14

NIH Information on Related Dementias Frontotemporal Disorders Lewy Body Dementia Information for patients, families, caregivers, professionals alzheimers/topics/other- dementias

NIA-funded Alzheimer’s Disease Centers (ADCs) ADCs conduct research to improve diagnosis and care and test treatments Help with obtaining diagnosis and medical management Opportunities to participate in research research-centers 16

Eldercare Locator Hours of Operation: Monday – Friday 9:00am – 8:00pm ET 17

Brochures to download and print or order online Have Questions? Chat or Call Search by Location OR Topic Links to: BenefitsCheckUP Federal Websites that offer valuable information on a range of critical eldercare issues. Links to non-profit organizations that focus on eldercare and other aging issues. 18

2014 Eldercare Locator Data Report available at Public/About/Data-Reports.aspx Public/About/Data-Reports.aspx

Jennifer Watson, MA National Institute on Aging, NIH Resources for Caregivers 20

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NIA ADEAR Caregiving Tips & Info  Free publications & e-Books  Videos & resource lists  Links to support agencies & organizations  Featured: Comprehensive caregiving guide 22 caring-person-alzheimers-disease

National Family Caregiver Support Program 23

Caregiver Resources Caregiver Center Information on caregiving through stages, personal care, care planning, legal and financial planning Dementia & Driving Resource Watch videos to see families deal with driving issues Learn how to plan and start the conversation ers-dementia-and-driving.asp ers-dementia-and-driving.asp

Caregiver Resources, cont. ALZConnected Active social networking community Peer support for caregivers and people with Alzheimer’s Alzheimer’s Navigator Create customized action plan with personalized surveys to navigate care needs

Free Family E-Learning Courses Know the 10 Signs: Early Detection Matters The Basics: Memory Loss, Dementia and Alzheimer’s Disease Legal and Financial Planning for Alzheimer’s Disease Living with Alzheimer’s for People with Alzheimer’s Living with Alzheimer’s for Caregivers (Early, Middle, Late Stages) Living with Alzheimer’s for Younger-Onset Alzheimer's Courses available in communities nationwide and online Take online courses any time, at your convenience

Medicare Caregiver Resources U.S. Centers for Medicare and Medicaid Services (CMS) What does Medicare cover? Caregiver resources What every caregiver needs to know Caring for someone with a chronic illness Planning for the future What caregiver support is available in my area? Taking care of yourself Caregiver resource kit 27

Support for Caregivers of Veterans U.S. Department of Veterans Affairs (VA) Family caregivers taking care of veterans Caregiver Support Line New Initiative: Building Better Caregivers™ 28

CDC Emergency Preparedness Resources Centers for Disease Control and Prevention (CDC) State and community preparedness guide for community-dwelling older adults (60+) Web portal Compilation of existing information, resources, and tools Features new tools for planners 29

Legal Info for Employed Caregivers U.S. Department of Labor Family and Medical Leave Act Family and Medical Leave Act Advisor

State/Rural Resources United States Department of Agriculture (USDA), Cooperative Extension System Topics include Disaster preparedness Military families Grandparents raising grandchildren Housing Nutrition current-and-looming-challenge#.U7HzlXYpAdY 31

Summary: Federal Government Caregiver Resources Handy summary of caregiver resources available through the Federal government: conferenceonaging.gov/ happening/resources- caregivers.html 32

Resources for Professionals Amy Wiatr-Rodriguez, MSW Administration for Community Living 33

NIA ADEAR Resources for Professionals Tools for assessment, diagnosis, treatment & management Professional training Patient care & education alzheimers-and-dementia-resources- professionals Assessing Cognitive Impairment Quick Guide

CDC Healthy Brain Initiative Healthy Aging Program Research Briefs: financial exploitation, emergency preparedness, and stigma ICML Research Papers

CDC World Alzheimer’s Awareness Month Page html

CDC BRFSS (Behavioral Risk Factor Surveillance System) Cognitive Module Caregiver Module publichealth/data- collection.asp

ACL Alzheimer’s Disease Programs ms/HPW/Alz_Grants/index.aspx Administration on Aging (AoA)/ Administration for Community Living (ACL) Alzheimer’s Disease Supportive Services Program (ADSSP) Alzheimer’s Disease Initiative – Specialized Supportive Services (ADI- SSS) 38

National Alzheimer’s and Dementia Resource Center (NARDC) Webpage /index.aspx#new Issue Briefs IDD and Dementia Wandering Training Resources Compendium for Dementia Care Providers and Volunteers Dementia-Capability Tools Assessment tools for states and community based organizations Tools for Screening, Identification, Referral, and Care Planning for People With Alzheimer’s Disease and Their Caregivers Webinars 39

National Partnership to Improve Dementia Care in Nursing Homes: Certification/SurveyCertificationGenInfo/National-Partnership-to- Improve-Dementia-Care-in-Nursing-Homes.html Certification/SurveyCertificationGenInfo/National-Partnership-to- Improve-Dementia-Care-in-Nursing-Homes.html – Resource repository: Reform of Requirements for Long-Term Care Facilities: proposed rule CMS-3260-P, is at: /medicare-and-medicaid-programs-reform-of-requirements-for- long-term-care-facilities /medicare-and-medicaid-programs-reform-of-requirements-for- long-term-care-facilities – Comments taken until October 14, Centers for Medicare & Medicaid Services 40

CMS’s Innovation Center - Health Care Innovation Awards General information including disease-specific and complex/high risk evaluation reports is available at: Awards/ Awards/ Medicaid’s Innovation Accelerator Program Advancing Medicaid innovation in four areas: substance use, HCBS, physical/mental health integration, and complex care More information at: center/innovation-accelerator-program/beneficiaries-with- complex-needs/beneficiaries-with-complex-needs.htmlhttp:// center/innovation-accelerator-program/beneficiaries-with- complex-needs/beneficiaries-with-complex-needs.html Centers for Medicare & Medicaid Services 41

HHS has asked the National Quality Forum (NQF) to begin work on nationally endorsed quality measures for home and community-based services (HCBS), which impact people with ADRD and others who may need support to live at home. Staff from CMS, ACL, and the Substance Abuse and Mental Health Services Administration are steering the work. More information on this project is at: D= Attendees can register for regular updates. D=77692 Centers for Medicare & Medicaid Services 42 Home and Community-Based Services Quality

Geriatric Education Centers (GEC) Program Activities Purpose: Provide training to healthcare providers on Alzheimer’s & related dementias Goal: Improve detection and early intervention of AD and ultimately improve care for patients and their families New! FREE 5-module, web-based program on dementia care (HRSA- funded in collaboration with ACL) Address the inter-professional approach to assessment and management of Alzheimer’s disease and dementia Final webinar on Wednesday, September 30, 2015: 2 PM — 3:15 PM Palliative Care in End Stage Dementia Register at: 43

Geriatrics Workforce Enhancement Program Goals: Changing clinical training environments into integrated geriatrics and primary care delivery systems. Training providers who can assess and address the needs of older adults and their families or caregivers at the individual, community, and population levels. Delivering community-based programs to improve health outcomes and the quality of care for older adults. For a list of awardees & contact info, go to: _Reports/FindGrants/GRANT_FIND&ACTIVITY=U1Q&rs:Format=HTM L4.0 _Reports/FindGrants/GRANT_FIND&ACTIVITY=U1Q&rs:Format=HTM L4.0 44

Brain Health Amy Wiatr-Rodriguez, MSW Administration for Community Living 45

Brain Health Resource Evidence-based materials to facilitate conversations about brain health as we age Developed by ACL, NIH, CDC of the U.S. Department of Health and Human Services Plain language For use in community settings with older adults, people with disabilities, and caregivers 46

Brain Health Resource – Materials 3 Parts: Brain Health Basics: Learn and teach others about the risks related to brain health and how to reduce them. Brain Injury: Learn and teach others about how to prevent brain injury and how to get help if you do have one. (NEW) Dementia: Learn how to create “dementia-capable” long-term services and supports at the state and local levels to help people who have Alzheimer’s disease and other types of dementia. (NEW) 47

BrainHealth.gov

Brain Health Alz. Assn: New 1-hour Program For a program near you call or visit

Participating in Research Jennifer Watson, MA National Institute on Aging, NIH 50

Recruiting Older Adults into Research ROAR Toolkit /publication/roar-toolkit 51 ACL-NIH-CDC Toolkit includes: User Guide: Tips for use FAQs Social media messages Short & long slide decks with speaker notes Customizable flyers Now available in Spanish and Chinese!

Participating in Alzheimer’s Research /volunteer

FDA Clinical Trials Resources What Patients Need to Know: ts/clinicaltrials/default.htm ts/clinicaltrials/default.htm Women in Clinical Trials: umers/ByAudience/ForWome n/ucm htm umers/ByAudience/ForWome n/ucm htm

Clinical Trials: Alzheimer’s Association TrialMatch™ Free, easy-to-use clinical studies matching service Connects individuals with Alzheimer's, caregivers, healthy volunteers and physicians with current studies Continuously updated database of Alzheimer's clinical trials 225+ promising clinical studies conducted at nearly 700 trials sites across the country clinical_trials/find_clinical_ trials_trialmatch.asp clinical_trials/find_clinical_ trials_trialmatch.asp

Stay Up to Date on Alzheimer’s & Dementia Social @AoAgov Facebook: YouTube: E-Alerts CDC: ACL: NIA:

Slides, audio and transcript will be posted on-line, generally within 2 weeks after the live webinar at ants/index.aspx#resources ants/index.aspx#resources Free CEs for Webinar 1 will be available for 2 years after the live webinar (through October 27, 2017). 56 Questions?

INFORMATION ON CE CREDIT

ACCREDITATION STATEMENTS CNE: The Centers for Disease Control and Prevention is accredited as a provider of Continuing Nursing Education by the American Nurses Credentialing Center's Commission on Accreditation. This activity provides 1.5 contact hours. CEU: The Centers for Disease Control and Prevention is authorized by IACET to offer 0.2 CEU's for this program. CECH: Sponsored by the Centers for Disease Control and Prevention, a designated provider of continuing education contact hours (CECH) in health education by the National Commission for Health Education Credentialing, Inc. This program is designated for Certified Health Education Specialists (CHES) and/or Master Certified Health Education Specialists (MCHES) to receive up to 1.5 total Category I continuing education contact hours. Maximum advanced level continuing education contact hours available are 0 CDC provider number GA

Instructions for requesting CE For best functioning, please use a browser other than Internet Explorer (e.g., Firefox, Chrome) Go to and log in (you may need to register as a new participant). After successful log in, the “Participant Services” menu displays. Select “Search and Register”. Select option 2, “Keyword Search”, and enter the course WC2463 and select “View”. Select the course “092215”to open the Course Description page. Scroll down to the box labeled “Register Here”, choose the appropriate credit type, and select “Submit”. The next page requests demographic information. Answer or update the demographic questions. Scroll down to the bottom of the page and click “Submit”. You will be asked to enter the Verification Code (ADWeb14) prior to completing the evaluation. The post-test is required and will follow the evaluation. 59

If you have any questions or problems accessing the continuing education, please contact: CDC/ATSDR Training and Continuing Education Online TRAIN at Instructions for Requesting CE (Webcast) (9/22/15-10/26/15): _- _webinar_series_on_alzheimers_disease_and_resources_tceonline _instuctions.docx Instructions for Requesting CE (Web on Demand) (10/27/15- 10/27/17): _- _webinar_series_on_alzheimers_disease_and_resources_tceonline _instuctions.docx 60