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.

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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 4th Annual Webinar Series

on Alzheimer’s & Related Dementias

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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

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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 TechnologyTuesday, November 17

• For a more detailed agenda & CEU information, please go to https://www.nia.nih.gov/alzheimers/announcements/2015/09/2015-alzheimers-related-dementias-webinar-series-professionals

• Archived webinars (2012-2014) available at: http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx#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 2025

2. 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

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National Alzheimer’s Plan Goals

National Alzheimer’s Plan Update• 2015 Updated Plan: http://

aspe.hhs.gov/national-plan-address-Alzheimer’s-disease-2015-update

• NIH “Bypass Budget” and Research Progress: https://www.nia.nih.gov/alzheimers/bypass-budget-fy2017

• Of note: presentations on FTD, Lewy & Vascular dementias – view at: http://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Jul2015

Ruth Drew, MSAlzheimer’s Association

Resources for Consumers and Families

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Federal Portals

http://alzheimers.gov

http://Aging.gov

National Alzheimer’s Call Center24/7 Helpline (800)272-3900 http://www.alz.org/

• 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

• http://www.communityresourcefinder.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

• http://www.alz.org/i-have-alz/i-have-alzheimers-dementia.asp

NIA Alzheimer’s Disease Education and Referral (ADEAR) Center

1-800-438-4380 http://www.nia.nih.gov/alzheimers

• 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 Eastern14

NIH Information on Related Dementias

• Frontotemporal Disorders• Lewy Body Dementia

Information for patients, families, caregivers, professionals

https://www.nia.nih.gov/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 researchhttp://www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers

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Eldercare Locator 1-800-677-1116 http://www.eldercare.gov

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

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http://www.eldercare.gov

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.

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2014 Eldercare Locator Data Report available at http://www.eldercare.gov/Eldercare.NET/

Public/About/Data-Reports.aspx

Jennifer Watson, MANational Institute on Aging, NIH

Resources for Caregivers

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http://www.alzheimers.gov/

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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

http://www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease

https://www.nia.nih.gov/alzheimers/topics/caregiving

National Family Caregiver Support Program

http://www.aoa.acl.gov/AoA_Programs/HCLTC/Caregiver/index.aspx23

Caregiver ResourcesCaregiver Center• Information on caregiving

through stages, personal care, care planning, legal and financial planning

• http://www.alz.org/care

Dementia & Driving Resource• Watch videos to see families deal

with driving issues

• Learn how to plan and start the conversation

• http://www.alz.org/care/alzheimers-dementia-and-driving.asp

Caregiver Resources, cont.ALZConnected

• Active social networking community

• Peer support for caregivers and people with Alzheimer’s

• https://www.alzconnected.org/

Alzheimer’s Navigator

• Create customized action plan with personalized surveys to navigate care needs

• https://www.alzheimersnavigator.org

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

• http://training.alz.org/

• Courses available in communities nationwide and online

• Take online courses any time, at your convenience

Medicare Caregiver ResourcesU.S. Centers for Medicare and Medicaid Services (CMS)

What does Medicare cover? Caregiver resourcesWhat 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 yourselfCaregiver resource kit

http://www.medicare.gov/campaigns/caregiver/caregiver.html 27

Support for Caregivers of VeteransU.S. Department of Veterans Affairs (VA)

Family caregivers taking care of veterans

http://www.caregiver.va.gov

Caregiver Support Line 1-855-260-3274

New Initiative: Building Better Caregivers™

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CDC Emergency Preparedness ResourcesCenters 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 toolsFeatures new tools for planners

http://www.cdc.gov/aging/emergency/

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Legal Info for Employed CaregiversU.S. Department of LaborFamily and Medical Leave Act Family and Medical Leave Act Advisor

http://www.dol.gov/whd/regs/compliance/whdfs28.pdf http://www.dol.gov/elaws/fmla.htm

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State/Rural ResourcesUnited States Department of Agriculture (USDA), Cooperative Extension SystemTopics include

Disaster preparednessMilitary families Grandparents raising grandchildrenHousingNutrition

http://www.extension.org/pages/69940/alzheimers-disease:-a-current-and-looming-challenge#.U7HzlXYpAdY 31

Summary: Federal Government Caregiver Resources

Handy summary of caregiver resources available through the Federal government:http://www.whitehouseconferenceonaging.gov/happening/resources-caregivers.html

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Resources for Professionals

Amy Wiatr-Rodriguez, MSWAdministration for Community Living

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NIA ADEAR Resources for Professionals • Tools for assessment,

diagnosis, treatment & management

• Professional training• Patient care & education

https://www.nia.nih.gov/alzheimers/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

http://www.cdc.gov/aging/healthybrain/index.htm

CDC World Alzheimer’s Awareness Month Page

http://www.cdc.gov/features/worldalzheimersday/index.html

CDC BRFSS (Behavioral Risk Factor Surveillance System)

• Cognitive Module

• Caregiver Module

http://www.alz.org/publichealth/data-collection.asp

ACL Alzheimer’s Disease Programs

http://www.aoa.acl.gov/AoA_Programs/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)

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National Alzheimer’s and Dementia Resource Center (NARDC) Webpage

http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx#newIssue 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: https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/National-Partnership-to-Improve-Dementia-Care-in-Nursing-Homes.html

– Resource repository: https://www.nhqualitycampaign.org/dementiaCare.aspx

Reform of Requirements for Long-Term Care Facilities: proposed rule CMS-3260-P, is at: https://www.federalregister.gov/articles/2015/07/16/2015-17207/medicare-and-medicaid-programs-reform-of-requirements-for-long-term-care-facilities

– Comments taken until October 14, 2015.

Centers for Medicare & Medicaid Services Centers for Medicare & Medicaid Services

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CMS’s Innovation Center - Health Care Innovation AwardsGeneral information including disease-specific and complex/high risk evaluation reports is available at: http://innovation.cms.gov/initiatives/Health-Care-Innovation-Awards/

Medicaid’s Innovation Accelerator ProgramAdvancing Medicaid innovation in four areas: substance use, HCBS, physical/mental health integration, and complex care• More information at: http://

www.medicaid.gov/state-resource-center/innovation-accelerator-program/beneficiaries-with-complex-needs/beneficiaries-with-complex-needs.html

Centers for Medicare & Medicaid Services Centers for Medicare & Medicaid Services

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• 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: http://www.qualityforum.org/ProjectDescription.aspx?projectID=77692. Attendees can register for regular updates.

Centers for Medicare & Medicaid Services Centers for Medicare & Medicaid Services

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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 PMPalliative Care in End Stage Dementia

• Register at: https://www.annenberg.net/register/5344/

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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: https://ersrs.hrsa.gov/ReportServer/Pages/ReportViewer.aspx?/HGDW_Reports/FindGrants/GRANT_FIND&ACTIVITY=U1Q&rs:Format=HTML4.0

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Brain Health

Amy Wiatr-Rodriguez, MSWAdministration for Community Living

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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• http://www.acl.gov/Get_Help/BrainHealth/Index.aspx

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Brain Health Resource – Materials3 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)

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BrainHealth.gov

Brain HealthAlz. Assn: New 1-hour Program

For a program near you call 800-272-3900 or visit http://www.communityresourcefinder.org/

healthy living for your body and brain

tips from the latest research

Participating in Research

Jennifer Watson, MANational Institute on Aging, NIH

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Recruiting Older Adults into Research ROAR Toolkit

https://www.nia.nih.gov/health/publication/roar-toolkit

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ACL-NIH-CDCToolkit 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

https://www.nia.nih.gov/alzheimers/volunteer

FDA Clinical Trials Resources

• What Patients Need to Know: http://www.fda.gov/forpatients/clinicaltrials/default.htm

• Women in Clinical Trials: http://www.fda.gov/ForConsumers/ByAudience/ForWomen/ucm118508.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• http://www.alz.org/research/clinical_trials/find_clinical_

trials_trialmatch.asp

Stay Up to Date on Alzheimer’s & Dementia

• Social mediaTwitter: @Alzheimers_NIH, @ACLgov, @AoAgovFacebook: www.facebook.com/AoA.govYouTube: https://www.youtube.com/NatlInstituteOnAging• E-AlertsCDC: http://www.cdc.gov/Other/emailupdates/ACL: https://public.govdelivery.com/accounts/USACL/subscriber/newNIA: https://www.nia.nih.gov/contact/stay-connected

• Slides, audio and transcript will be posted on-line, generally within 2 weeks after the live webinar at http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx#resources

• Free CEs for Webinar 1 will be available for 2 years after the live webinar (through October 27, 2017).

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Questions?

INFORMATION ON CE CREDIT

ACCREDITATION STATEMENTSCNE: 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 GA0082.

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Instructions for requesting CE

For best functioning, please use a browser other than Internet Explorer (e.g., Firefox, Chrome)• Go to http://www.cdc.gov/TCEOnline, 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 1-800-41TRAIN Email at ce@cdc.gov

Instructions for Requesting CE (Webcast) (9/22/15-10/26/15):https://d2cauhfh6h4x0p.cloudfront.net/s3fs-public/wc2463-092215_-_webinar_series_on_alzheimers_disease_and_resources_tceonline_instuctions.docx

Instructions for Requesting CE (Web on Demand) (10/27/15-10/27/17):https://d2cauhfh6h4x0p.cloudfront.net/s3fs-public/wd2463-092215_-_webinar_series_on_alzheimers_disease_and_resources_tceonline_instuctions.docx

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