Updates on Alzheimer’s Disease & Related Dementias Resources

1. Updates on Alzheimer’s Disease & Related Dementias Resources 2014 ACL/CDC/NIA Alzheimer’s Webinar Series July 22, 2014

2. 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 GA0082.

3. 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/partnerswish 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. Presentationswill not include any discussion of the unlabeled use of a product or a product under investigational use.

4. To receive continuing education (CE): Complete the activity Complete the Evaluation at http://www.cdc.gov/TCEOnline Pass the posttest at 75% at http://www.cdc.gov/TCEOnline If requesting CE, please use the following Verification Code: ADWeb14 FEES:There are no fees for CE.

5. Welcome to the 3rd Annual Dementia Webinar Series A collaboration of the Administration for Community Living, the Centers for Disease Control and Prevention and the National Institute on Aging/NIH Jane Tilly,  DrPH Administration for Community Living/Administration on Aging jane.tilly@acl.hhs.gov 5

6. National Alzheimer’s Project Act of 2011 Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to establish the National Alzheimer’s Project to: • Create and maintain an integrated national plan to overcome Alzheimer’s • Coordinate research and services across all federal agencies • Accelerate development of treatments to prevent, halt, or reverse the disease • Improve early diagnosis and coordination of care and treatment of the disease • Improve outcomes for ethnic and racial minority populations at higher risk • Coordinate with international bodies to fight Alzheimer’s globally • Create an Advisory Council to review and comment on the National Plan and its implementation

7. National Alzheimer’s Plan Goals • Prevent and Effectively Treat Alzheimer’s Disease by 2025 • Optimize Care Quality and Efficiency • Expand Supports for People with Alzheimer’s Disease and Their Families • Enhance Public Awareness and Engagement • Track Progress and Drive Improvement

8. National Alzheimer’s Plan 2014 update • Goal 1: Research • Create milestones for research goals • Brain health education program • DoD & VA collaboration on neurodegeneration research • Goal 2: Optimize care • Help state LTSS become dementia-capable • Link to broader improvements in LTSS • Identify meaningful care outcomes • Use HIT to improve care transitions • Explore models of family support for younger onset dementia, including those with intellectual disabilities 8

9. National Alzheimer’s Plan 2014 update • Goal 3: Expand supports • Enhance disaster preparedness • Engage law enforcement • Compile state policies on residential care & adult day health • Goal 4: Public awareness • National education & outreach • Improve coordination between IHS, Tribal & Urban Indian Health programs with aging network • Enhance global collaboration • Goal 5: Data • Dementia chartbook • Develop consistent codes for analysis of administrative data 9

10. Webinar Series Goals • Inform the Aging, Public Health, and Dementia Research Networks about federal resources to help people with dementia and their family caregivers. • Improve coordination of federal resources available to them. • Enable CEUs for those who desire them. 10

11. Webinar Series Calendar • Webinar #2: Community Collaborations for Assisting People with Alzheimer’s and Dementias: The Steps to SuccessThursday, August 28 • Webinar #3:Alzheimer’s Research UpdatesThursday, September 25 • For a more detailed agenda & CEU information, please go to http://www.acl.gov/NewsRoom/NewsInfo/2014/2014-Webinars-Alz.aspx.  • Archives will be available at: http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx (under Resources & Useful Links) 11

12. Presenters: • Amy Wiatr-Rodriguez, MSW, Aging Services Program Specialist at the Administration for Community Living/Administration on Aging will discuss existing resources for consumers. • Jennifer Watson, MA, Senior Public Affairs Specialist, National Institute on Aging at the National Institutes for Health will discuss new resources for consumers, including the brand new Brain Health Resource. • Lynda Anderson, PhD, Director, Healthy Aging Program, Centers for Disease Control and Prevention will discuss resources for caregivers. • Joan Weiss, PhD, Senior Advisor, Division of Medicine and Dentistry, Health Resources and Services Administration, will discuss resources for paid staff. 12

13. Consumer Resources on Alzheimer’s Disease & Related Dementias Amy Wiatr-Rodriguez, MSW Administration for Community Living/Administration on Aging 312-938-9858 amy.wiatr@acl.hhs.gov 13

14. http://alzheimers.gov – Your Federal Portal

15. http://www.nia.nih.gov/alzheimers NIA’s Alzheimer’s Disease Education and Referral (ADEAR) Center 1-800-438-4380Mon-Fri, 8:30am-5:00 pm Eastern Time adear@nia.nih.gov Focus on research-based information Referral to government and organization resources 15

16. http://www.nia.nih.gov/alzheimers ADEAR Center Website features: Alzheimer’s research news Alzheimer’s topics: Causes, Symptoms, Diagnosis, Caregiving, Treatment, and more Easy access to caregiving& other professional information E-alert Sign-up, Twitter FAQs 16

17. http://www.nia.nih.gov/alzheimers/publication ADEAR Publications Available online to read and download Users can also order free print copies Bulk copies available for organizations 17

18. http://www.nia.nih.gov/alzheimers/alzheimers-disease-research-centershttp://www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers 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 18

19. National Alzheimer’s Call Center24/7 Helpline 800-272-3900 or http://www.alz.org/we_can_help_24_7_helpline.asp • Alzheimer’s Association is grantee of Administration for Community Living • The National Contact Center operates in partnership with Alzheimer’s Association chapters • 24,000 calls/month nationwide to provide support, information and referrals • Calls taken by: • General information specialists • Masters prepared Care Consultants 23

20. Assistance in Languages other than English, including Spanish and Asian portals • Information and brochures available in multiple languages • http://www.alz.org/espanol • http://www.alz.org/asian 31

21. Online Resource: ALZConnected Active social networking community For people w/ Alzheimer’s & their families Public and private groups 40K visits/month Discuss unique challenges Message boards Peer support https://www.alzconnected.org/ 21

22. Eldercare Locator 1-800-677-1116 Hours of Operation: Monday – Friday 9:00am – 8:00pm ET 22

23. http://www.eldercare.gov Have Questions? Chat or Call Search by Location OR Topic • Links to: • BenefitsCheckUP • LTCPathFinder • 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. Brochures to download and print or order online 23

24. Search By Topic 24

25. http://longtermcare.gov/

26. http://www.cdc.gov/aging/pdf/2013-healthy-brain-initiative.pdfhttp://www.cdc.gov/aging/pdf/2013-healthy-brain-initiative.pdf

27. Dementia Capability - Issue brief and toolkit resources http://aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx In model dementia-capable systems, programs are tailored to the unique needs of people with Alzheimer’s disease or other dementias (AD), and their caregivers. Such considerations include: • Information & assistance services have a method to identify people with possible AD & give a recommendation for physician follow-up. • Options counseling staff communicate effectively with persons with dementia and their family caregivers and know what services this population is likely to seek. • Publicly and privately financed services are capable of meeting the unique needs of persons with dementia and their caregivers. • Workers have appropriate training in identifying possible AD, the symptoms of AD, the likely illness trajectory, and services needed. • Quality assurance systems measure how effectively LTSS providers & systems serve persons with dementia and their family caregivers. 27

28. New Consumer Resources on Brain Health and Dementia Jennifer Watson, National Institute on Aging, NIH

29. New! Brain Health Resource • Evidence-based materials to facilitate conversations with older people 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 senior centers and other community settings

30. Brain Health Resource (ACL-NIH-CDC) 4 Components: • PowerPoint presentation (23 slides, 60-minute session) Topics include: • preventing falls to avoid head injury • refraining from excessively drinking alcohol • getting enough sleep • managing diabetes and blood pressure • Educator Guide with additional information for presenters • One-page handout: “Brain Health as You Age: You Can Make a Difference!” • Supplementary handout: “Brain Health as You Age: Key Facts and Resources” • Available FREE at: http://www.acl.gov/Get_Help/BrainHealth/Index.aspx

31. Advance Care Planning Fact Sheets (ACL) • Fact sheet series from Eldercare Locator: • Advance Care Planning For Serious Illness • Care for Advanced Cancer • Caregivers and Serious Illness • Dementia, a Serious Illness • Hospice Care • Palliative or Comfort Care • Available at: http://eldercare.gov/Eldercare.NET/Public/Resources/Advanced_Care/Index.aspx

32. I Have Alzheimer’s Disease • Newly redesigned • Input from Early Stage Advisors • Know what to expect • Treatments & research • Programs & support • Overcoming stigma • Younger-onset Alzheimer’s • Live well Available at: http://www.alz.org/i-have-alz/i-have-alzheimers-dementia.asp 25

33. Online Resources: Community Resource Finder • Access comprehensive lists of resources, services and community programs (including ADRC’s, AAA’s) • Search by category and proximity • Sort by specific needs and preferences • Create lists of resources you need near you Available at: http://www.communityresourcefinder.org 29

34. Long-Distance Caregiving (NIA) • Online tip sheets • Getting Started: http://www.nia.nih.gov/health/publication/long-distance-caregiving-getting-started • Family Affair: http://www.nia.nih.gov/health/publication/long-distance-caregiving-family-affair

35. Talking With Your Doctor Toolkit (NIA) • PowerPoint presentation (18 slides, 45 minutes) features tips for how to: • Get ready for a doctor’s visit • Effectively talk with a clinician about health concerns • Make collaborative decisions about treatment • Remember what was discussed following the appointment • Toolkit also includes speaker notes, handouts • Available at: http://www.nia.nih.gov/health/publication/talking-your-doctor-presentation-toolkit

36. Other Dementias Resources (NIH) • Booklets for patients, families, and health care professionals on: • The Dementias • Frontotemporal Disorders • Lewy Body Dementia (New) • Available from: http://www.nia.nih.gov/alzheimers/topics/other-dementias

37. Participating in Alzheimer’s Research (NIH) • Coming soon! • Guide for older adults and families discusses: • Types of clinical research • Common questions about participating • Why placebos are important • Benefits, risks, and safety • Need for all kinds of people • Will be available at: http://www.nia.nih.gov/alzheimers

38. Recruiting Older Adults into Research –ROAR (ACL-NIH-CDC) • Contact watsonjl@nia.nih.gov • Available Fall 2014

39. Caregivers of Persons with DementiaAlzheimer’s Disease and Related Dementias Resources UpdateLynda A. Anderson, PhDNational Center for Chronic Disease Prevention and Health PromotionCenters for Disease Control and Prevention

40. National Recognition for Caregivers’ Roles National Plan to Address Alzheimer's Disease • A number of strategic actions that focus on caregivers Healthy People 2020: Older Adults • “Reduce the proportion of unpaid caregivers of older adults who report an unmet need for caregiver support services” (Older Adults Topic: Objective 9) The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013 – 2018 • 6 action items focus on caregivers

41. Caregiver Supports and Services • National and state data • Resources and strategies to support independent living • Health promotion programs • ‘Dementia-capable’ care in community settings

42. http://www.alzheimers.gov/

43. http://www.nhats.org/scripts/aboutNHATS.htm

44. State Public Health Surveillance Updated set of 9 questions on caregiving available for the 2015+ Behavioral Risk Factor Surveillance System • Case definition: “During the past 30 days, did you provide regular care or assistance to a friend or family member who has a health problem or disability?” • If yes, ask: • Relationship to recipient; Type, length, and intensity of care • Health problem of care recipient • Services that are most needed that not currently receiving • If no, ask: “In the next 2 years do you expect to provide care or assistance to a friend or family member who has a health problem or disability?” http://www.cdc.gov/aging/

45. Estimates of Caregiving by States and Territories, BRFSS 2009*

46. Alzheimer’s Disease Supportive Services Program http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/index.aspx Administration on Aging (AoA)/ Administration for Community Living • Delivers supportive services and facilitates informal support for persons with ADRD and their family caregivers • Translates evidence-based models into community-level practice; and • Advances state initiatives toward coordinated systems of home and community-based care 46

47. National Family Caregiver Support Program http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Caregiver/ 47

48. Toolkits AoA toolkits focus on different aspects of providing home and community-based services to people with dementia and their caregivers • Innovations • Consumer Directed Care • Disaster Preparedness • Resources for Individuals &Families • Serving African American Families • Serving Asian-Pacific Islander Families • Serving Hispanic Families • Single Point of Entry • Supporting Family Caregivers http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/compendium.aspx#toolkits

49. ADEAR Caregiving Information http://www.nia.nih.gov/alzheimers/topics/caregiving http://www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease/about-guide http://www.nia.nih.gov/health/publication/so-far-away-twenty-questions-and-answers-about-long-distance-caregiving/getting Research-based information & tips • Publications, including eBooks • Feature articles • Videos & Resource Lists • Links to other organizations Caring for a person with Alzheimer’s disease: • Comprehensive, easy-to-read guide • Available FREE online

50. Information and Resources Centers for Medicare & Medicaid Services Resources • 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 http://www.medicare.gov/campaigns/caregiver/caregiver.html