CONNECTING PEOPLE WITH DEMENTIA AND THEIR FAMILY CAREGIVERS WITH CARE AND RESEARCH OPPORTUNITIES December 12, 2012

Learning Objectives Understand care options for persons with dementia Learn about tools and resources to assist individuals with dementia and caregivers Find opportunities to participate in research studies

Care Options Older Americans Act Programs under AoA –Wide range of services –Home and Community Services, including for caregivers Medicaid –Home and Community-Based Services –Nursing Homes Veterans Affairs –Home and Community-Based Services –Nursing Homes State-funded Care Options Private funds

U.S. Department of Health and Human Services Administration on Aging Central Office and Regional Offices State Units on Aging (56) Area Agencies on Aging (628) Local Service Provider Organizations (20,000+) CONSUMERS Tribal Organizations NH NA (256)

U.S. Department of Health and Human Services Administration on Aging Central Office and Regional Offices State Units on Aging (56) Area Agencies on Aging (655) Local Service Provider Organizations (29,000) SUPPORTIVE & NUTRITION SERVICES ELDER RIGHTS SERVICES COMMUNITY SERVICES IN-HOME SERVICES Service SystemACCESSSERVICES Information & Assistance Outreach Transportation Case Management

U.S. Department of Health and Human Services Administration on Aging Central Office and Regional Offices State Units on Aging (56) Area Agencies on Aging (655) Local Service Provider Organizations (29,000) ACCESS SERVICES ACCESS SERVICES SUPPORTIVE & NUTRITION SERVICES COMMUNITY SERVICES IN-HOME SERVICES Service System ELDER RIGHTS SERVICES Long Term Care Ombudsman Elder Abuse Prevention Benefits/ Pension Counseling Legal Assistance

U.S. Department of Health and Human Services Administration on Aging Central Office and Regional Offices State Units on Aging (56) Area Agencies on Aging (655) Local Service Provider Organizations (29,000) ACCESS SERVICES ACCESS SERVICES SUPPORTIVE & NUTRITION SERVICES ELDER RIGHTS SERVICES IN-HOME SERVICES Service System COMMUNITY SERVICES Adult Day Care Senior Centers Congregate Nutrition Legal Services Housing Services Employment Services Health Promotion/ Disease Prevention

U.S. Department of Health and Human Services Administration on Aging Central Office and Regional Offices State Units on Aging (56) Area Agencies on Aging (655) Local Service Provider Organizations (29,000) ACCESS SERVICES ACCESS SERVICES SUPPORTIVE & NUTRITION SERVICES ELDER RIGHTS SERVICES COMMUNITY SERVICES Service System IN-HOME SERVICES Personal Care Homemaker/ Chore Home Health Home-Delivered Meals Respite Home Repair

9 Generally 60+ No income or asset or citizenship requirement Targeted to those with greatest economic and social need Caregivers: person 18+ who is caring for Person who is 60+ Person with dementia of any age grandparent or other non-parent relative 55+ who is caring for Child who is not more than 18 Adult with a disability OAA Eligibility

Tools and Resources

–National Alzheimer’s Call Center: –Alzheimer’s website for caregivers –AoA Alzheimer resource webpage PW/Alz_Grants/index.asp PW/Alz_Grants/index.asp –ADSSP Grants 11 ACL-supported Alzheimer Specific Resources

24/7 National Contact Center Calls taken by: General information specialists Masters prepared Care Consultants 53% increase in CC calls last year

Alzheimers.gov

AoA Alzheimer’s Resource Page Webinar Series: Legal Issues and Alzheimer’s Disease Webinar Series: Alzheimer’s Disease and Tools for Caregivers rams/HPW/Alz_Grants/index.aspx#curr ent under Resources & Useful Linkshttp:// rams/HPW/Alz_Grants/index.aspx#curr ent

Alzheimer’s Disease Supportive Services Program Delivers supportive services Translates evidence-based models Advances state initiatives toward coordinated systems of home and community-based care 55 funded programs in 30 States, the District of Columbia and Puerto Rico Contact local Area Agency on Aging z_Grants/index.aspx#currenthttp:// z_Grants/index.aspx#current

Eldercare.gov The Eldercare Locator Making the Connection to Local Resources

Elder Care Locator Website Searchable Database Identifies Local Agencies and Providers Trustworthy Resources Includes Information about Topics Tools for Caregivers and Professionals First Step to Access Needed Services

Research Opportunities

Who Needs to Be Involved in Clinical Research for AD? Diverse Communities Persons & Families Health Care Providers Researchers Aging Network Research Sponsors

How to Actively Connect to Research? NIA-funded Alzheimer’s Disease Centers Alzheimer’s Disease Education and Referral Center (ADEAR) Alzheimer’s Disease Information Network (AD-IN) TrialMatch ®

Alzheimer’s Disease Education and Referral (ADEAR) Center National Institute on Aging alzheimers-disease-research-centers NIA-funded Alzheimer’s Disease Centers: ADCs conduct research on all aspects of Alzheimer’s Disease Provide diagnosis and education services for patients and families Opportunities to participate in research

Alzheimer’s Disease Education and Referral (ADEAR) Center National Institute on Aging NIA’s ADEAR Center Website features: AD Research Centers Clinical Trials Alzheimer’s research news Alzheimer’s topics: Symptoms, Diagnosis, Treatment, Research, more E-alert Sign-up Free publications

Alzheimer’s Disease Education and Referral (ADEAR) Center National Institute on Aging clinical-trials clinical-trials NIA ADEAR Search for Alzheimer’s Clinical Trials Find trials by: Location Eligibility criteria Drugs tested Featured trials ADEAR phone support Sign up to receive e-alerts, RSS when new trials posted/updated

Alzheimer’s Disease Education and Referral (ADEAR) Center National Institute on Aging Alzheimer’s Disease Information Network (AD-IN): Educates the public about AD research and upcoming clinical research studies via alerts /Registry.aspx /Registry.aspx

25 als_trialmatch.asphttp:// als_trialmatch.asp Increase the numbers of individuals enrolled in Alzheimer’s trials and studies Provide information to the public and healthcare professionals to help facilitate Alzheimer’s clinical trial enrollment

26 Jane Tilly, DrPH Administration on Aging/ Administration for Community Living U.S. Department of Health & Human Services