Alzheimer's and Dementia Resources You Can Use

Alzheimer's and Dementia Resources You Can Use

Alzheimers and Dementia Resources You Can Use 2017 ACL/CDC/NIA Webinar Series on Alzheimers & Related Dementias March 1, 2017 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 Webinar Series Goals Inform o Aging & Disability, o Public Health, and o Dementia Research professionals about federal resources to help people with dementia and their families and caregivers

Improve coordination of Federal resources Encourage awareness of research participation opportunities 3 Archived webinars (2012-2015) Archived webinars (2012-2015) available at: index.aspx#resources 4 Todays Webinar National Alzheimers Project Act/Plan Update Alzheimers and Dementia Resources

o For consumers, families, and caregivers o For professionals Special focus areas: o Veterans and Their Caregivers o Financial Exploitation o Depression Background National Alzheimers Plan Updates Amy Wiatr-Rodriguez Administration for Community Living 7

National Alzheimers Plan Goals 1. Prevent and Effectively Treat Alzheimers Disease by 2025 2. Optimize Care Quality and Efficiency 3. Expand Supports for People with Alzheimers Disease and Their Families 4. Enhance Public Awareness and Engagement 5. Track Progress and Drive Improvement 8 National Alzheimers Plan Updates National Alzheimers Project Act: 2016 Updated Plan: rs-disease-2016-update 2016 ADRD Summit Prioritized Research Milestones: -adrd-summit-2016-prioritized-research-milestones National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers scheduled for October 16-17, 2017 Resources for Consumers, Families, and Caregivers Amy Wiatr-Rodriguez Administration for Community Living 10

NIA Alzheimers Disease Education and Referral (ADEAR) Center 1-800-438-4380 Focus on latest researchbased information on Alz & other dementias Free consumer & professional publications Bilingual (English/Spanish) Information Specialists Referral to government & organization resources, clinical trials Call Center:

Mon-Fri, 8:30am-5:00 pm Eastern 11 NIA-funded Alzheimers 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 h-centers 12 National Alzheimers Call Center

24/7 Helpline (800)272-3900 Alzheimers Assn. is grantee of Administration for Community Living National Contact Center partners with Alzheimers Association chapters Provide information, support and

referrals to local resources 300,000+ calls/year Staffed by dementia care experts and Masters prepared care consultants Bilingual agents and translation line enable calls in 200 languages

Selected Other Resources 1. website redesigned with input from Early Stage Advisors 2. free online community for anyone affected by Alzheimer's or another dementia 3. guided online tool to create a customized action plan and link to local resources 4. information on discussing driving and planning ahead 5. comprehensive lists of resources, services and community programs (including Aging & Disability Resource Centers and Area Agencies on Aging)

Eldercare Locator 1-800-677-1116 or Have Questions? Chat or Call Search by Location OR Topic Links to: Brochures to download and print or order online

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. 15

Eldercare Locator 1-800-677-1116 Hours of Operation: Monday Friday 9:00am 8:00pm ET - Redesigned website coming soon - New brochure on social isolation, Expand Your Circles 16 Participating in Alzheimers Research /volunteer FDA Clinical Trials Resources What Patients Need to Know: patients/clinicaltrials/ default.htm Women in Clinical Trials: Consumers/ByAudience/ ForWomen/ucm118508. htm

Registries and Matching Services registries-and-matching-services Alzheimers Prevention Registry: Open to individuals age 18 and older who are interested in learning about and possibly participating in

Alzheimers prevention clinical studies and trials. Brain Health Registry: Open to individuals age 18 and older who want to promote healthy brain function by preventing brain diseases, disorders, and injuries. Take online tests, learn about opportunities to participate in a wide range of studies. GeneMatch: Open to adults age 55 to 75 who are interested in enrolling in Alzheimers genetics studies. ResearchMatch: A service, funded by the National Institutes of Health, that helps match people of all ages interested in clinical trials with researchers. Requires an email address. TrialMatch: The Alzheimers Associations clinical studies matching service for individuals with Alzheimers, caregivers, and healthy volunteers. Veteran and Caregiver Resources

Tanya Friese, DNP, RN, CNL USN(ret) Educational Director - The Road Home Program at Rush The Center for Veterans and their Families Asst. Professor- Dept. of Community, Systems, and Mental Health Rush University College of Nursing Statistics 218,000 veterans will be diagnosed with a form of dementia in 2017 (U.S. Department of Veterans Affairs, 2017). U.S. Veterans who were prisoners of war (POWs) and developed PTSD secondary to their experience are two times more likely to develop dementia compared to veterans who were not POWS (Meziab et al., 2014). Barnes et al. (2014) found that veterans with traumatic brain injuries (TBI) are 60% more likely to develop dementia that

those without, as well as have an earlier onset of approximately 2 years. Research The VA is invested in determining why veterans are so vulnerable to dementia (U.S. Department of Veteran Affairs, 2017) Alzheimers Disease Neuroimaging Initiative (ADNI) developed in 2006 Evaluated insulin as an effective treatment in 2011 In 2014, discovered the use of Vitamin E to delay cognitive decline Developed a blood test for diagnostic purposes in 2015 Continually assessing environmental causes associated with war and combat

Veteran Resources VA healthcare resources included in the standard benefit package (U.S. Department of Veteran Affairs, 2017): Home based primary care homemakers/ home health aide Adult day care Respite care Outpatient clinics Inpatient hospitalizations Nursing homes Palliative care hospice Caregivers

In the U.S., 5.5 million individuals are currently serving as caregivers for veterans (Ramchand, 2014) Common negative effects of caregiving include (Bass et al., 2013): Unmet needs Role captivity Physical health strain Relationship strain depression Partners in Dementia Care (PDC) (Bass et al., 2013) Program designed to integrate community based care and medicine for both the patient and caregiver Developed to mirror success of BRI Care Consultation an evidence based program for caregivers and patients with

chronic conditions Utilizes coaches and trained counselors to touch base and mentor care givers Reassessment occur every 6 months to ensure that the caregivers needs are being met Dementia Caregiver Support Support Website: Support phone line: 1-855-260-3274 Caregiver video series: Decision making guide: _Decision_Making.asp Contact your local VA clinic for a caregiver workbook!

(U.S. Department of Veteran Affairs, 2017) References Barnes, D. E., Kaup, A., Kirby, K. A., Byers, A. L., Diaz-Arrastia, R., & Yaffe, K. (2014). Traumatic brain injury and risk of dementia in older veterans. Neurology, 83(4), 312319. Bass, D. M., Judge, K. S., Lynn Snow, A., Wilson, N. L., Morgan, R., Looman, W. J., ... & GarciaMaldonado, M. Maldonado, M. (2013). Caregiver outcomes of partners in dementia care: Effect of a care coordination program for veterans with dementia and their family members and friends. Journal of the American Geriatrics Society, 61(8), 13771386. Meziab, O., Kirby, K. A., Williams, B., Yaffe, K., Byers, A. L., & Barnes, D. E. (2014). Prisoner of war status, posttraumatic stress disorder, and dementia in older veterans. Alzheimer's & Dementia, 10(3), S236-S241. doi: 10.1016/j.jalz.2014.04.004 Ramchand, R., Tanielian, T., Fisher, M. P., Vaughan, C. A., Trail, T. E., Batka, C., ... & Ghosh-Dastidar, B. (2014). Key Facts and Statistics from the RAND Military Caregivers Study. Retrieved from

U.S. Department of Veteran Affairs. (2017). Office of research and development. Retrieved from Weiner, M. W., Friedl, K. E., Pacifico, A., Chapman, J. C., Jaffee, M. S., Little, D. M., ... & Yaffe, K. (2013). Military risk factors for Alzheimer's disease. Alzheimer's & Dementia, 9(4), 445-451 Resources for Professionals Lisa McGuire Centers for Disease Control and Prevention 29 CDCs Public Health Road Map The Public Health Road Map for State and National Partnerships 2013-2018

35 action items for public health officials to: Promote cognitive functioning Address cognitive impairment and Alzheimers disease Meet the needs of caregivers brain/roadmap.htm Using Data to Identify Disparities: Optional BRFSS Modules Subjective Cognitive Decline Worsening memory problems

Potential difficulties Discussions with health care professionals Revised in 2015 Caregiving Characteristics of caregivers Problems they face Greatest care needs 24 states in 2015 35 States in 2015 DC

Puerto Rico http://www. Data for Action: 2015 BRFSS publichealth/data- Data for Action: Data Portal

agingdata/index.html NHANES: Cognitive Data Administered during 2011-12 and 2013-14 cycles Interview questions During the past 12 months, have you experienced confusion or memory loss that is happening more often or is getting worse? During the past 7 days, how often have you had trouble remembering where you put things, like your keys or your wallet? Mobile exam center CERAD word recall Categorical verbal fluency (Animal naming) WAIS Digit symbol

2500 persons aged 60+ years completed the modules Publically available Spring 2017 Alzheimers Association: Developing and Revising Plans spotlight-assessment.pdf A Public Health Approach to Alzheimers and Related Dementias Recently released and revised, flexible curriculum linked to public health competencies Purpose: Increase understanding of

Alzheimers disease and related dementias as a multi-layered, growing public health issue Designed for faculty to use with undergraduate public health courses Developed & evaluated by the Alzheimer's Association, CDC, and the Emory Centers for Training and Technical Assistance at Emory University NIA ADEAR Resources for Professionals

Tools for assessment, diagnosis, treatment & management Professional training Patient care & education Assessing Cognitive Impairment Quick Guide alzheimers/alzheimers-anddementia-resources-professionals National Alzheimers and Dementia Resource Center (NADRC): Issue Papers, Articles, Toolkits, and Reports

Faith-Related Programs in Dementia Care, Support, and Education Guides & Presentations Translating Evidence-Based Dementia Interventions to the Community To register to attend live webinars go to: source-center-series Dementia-Capability Tools State Entities: Dementia Capability Quality Assurance Assessment Tool 39 Dementia Friendly America:

Centers for Medicare & Medicaid Services CMS and its partners are committed to finding new ways to implement practices that enhance the quality of life for people with dementia, protect them from substandard care and promote goaldirected, person-centered care for every nursing home resident National Partnership to Improve Dementia Care in Nursing Homes: rtificationGenInfo/National-Partnership-to-Improve-Dementia-Care-in-Nursing-H omes.html Resource repository: 41 Centers for Medicare & Medicaid Services Guidance on Unsafe Wandering and Exit-Seeking In December CMS issued Frequently Asked Questions to clarify

how providers can assist Medicaid beneficiaries with ADRD receiving home and community-based services (HCBS) to live selfdetermined lives in fully integrated community settings The guidance addresses person-centered planning, promising practices, staff training, and care delivery and includes many suggestions HCBS settings should not restrict individuals unless it is in the person-centered plan, all less restrictive interventions have been exhausted, and any restriction is regularly reassessed Information at: 42 Centers for Medicare & Medicaid Services New Codes in Medicares 2017 Physician Fee Schedule

Primary Care and Care Coordination: CMS covers enhanced payment for chronic care management, including payment for enhanced care management furnished following the initiating visit for beneficiaries with multiple chronic conditions Mental and Behavioral Health: CMS pays for specific behavioral health services and other approaches to behavioral health integration including the Collaborative Care Model, and other team-based care Cognitive Impairment Care Assessment and Planning: A new code pays for

cognitive and functional assessment and care planning for beneficiaries with cognitive NEJM article by Patrick Conway, CMSs Acting Administrator et al.: sue 43 CMSs New Person and Family Engagement Strategy Enhances person and family engagement Establishes definitions and consistency for frequently used terms to help people engage in their healthcare Serves as a guide to support meaningful, intentional application of person and family

engagement principles to all policies and programs addressing health, and wellbeing Creates a foundation for expanding awareness and enhance person and family engagement across CMS programs Strategy at: Quality-Initiatives-Patient-Assessment-I nstruments/ QualityInitiativesGenInfo /Person-and-Family-Engagement.html Geriatrics Workforce Enhancement Program (GWEP)

Integrates geriatrics with primary care Trains providers who can assess and address the needs of older adults and their families or caregivers at the individual, community, and population levels Provides Alzheimers disease and related dementias education to patients, families, caregivers, direct care workers, and health professions students, faculty, and providers Maximizes patient and family engagement BHWs geriatrics program aims to improve health outcomes for older adults.

Awardee abstracts & contact information can be found at: Viewer.aspx?/HGDW_Reports/FindGrants/GRANT _FIND&ACTIVITY=U1Q&rs:Format=HTML4.0 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 Recruiting Older Adults into Research ROAR Toolkit 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! /publication/roar-toolkit 47 Financial Exploitation of Older Adults Peter A. Lichtenberg, Ph.D., ABPP Director, Institute of Gerontology Professor of Psychology Wayne State University

Detroit, MI 48202 Knowledge to Gain from this Section Definitions of Financial exploitation Prevalence and Risk Factors

Screening for Financial exploitation Research by Alzheimers disease Research Centers Federal Consumer Information Six Domains of Financial Exploitation SIGNS OF


THEFT & SCAMS Types of Financial Exploitation Cases Hybrid FE: More likely to co-habitate and suffer from dementia; Lost an average of $185,574; also suffered physical abuse and/or neglect Pure FE: Lost an average of $79,422;

theft most common form (47%); fraud (32%) Jackson and Hafemeister (2012) Financial Exploitation Prevalence Acierno (2010): 5772 National Prevalence Sample 5% older adults victim of FE (not including scams) 2nd only to emotional abuse

Beach (2010): 10% older adults victim of FE since age 60 (including scams) Lichtenberg (2013): 1.1% older adults victim of fraud each year Predictors: Psychological factors, financial factors, Vulnerability factors

Lachs et al. (2013) Under-reporting: 1 in Triggers and Screening Identify new patterns of financial transactions: more frequent withdraws, wiring money, accompanied by others to bank Identifying cognitive decline and

impairment: not recalling transactions, financial management mistakes, change in hygiene Numeracy (Wood, 2016), Financial Skill decline (Marson, 2001-present) Financial decision making (Boyle 2012-present; Lichtenberg 2014present) Research at Alzheimer's

disease Centers Daniel Marson and colleagues, University of Alabama Birmingham Patricia Boyle and colleagues, Rush University Peter Lichtenberg, University of Michigan ADRC

Highlights of my research Financial decision making is not simply a cognitive task Psychological Vulnerability, financial experience and self-efficacy and susceptibility to influence also important

New Rating and Screening Scales (screening scale 10 items) tied to legal standards and Appelbaum and Grission decisional abilities training site, web, mobile web scale administration and scoring Keys to successful intervention

Planning ahead Skill with difficult conversations Understanding Adult Protective Services, Banks role Probateconservatorship,

guardianship options Federal websites insure banks treat you fairly to fraud and scams alcoast/Safety_27_Preventing_Financ ial_Abuse.pdf Alzheimers Association financial-exploitation-1 alert consumers Depression and Dementia: A Confounding Conundrum Mark Snowden, MD, MPH

Associate Professor University of Washington Department of Psychiatry and Behavioral Sciences Agenda Relationship Rates Why do they occur together? Differential Diagnosis Treatment Implications Resources DSM 5 MAJOR DEPRESSION CRITERIA 1) Depression/Sadness

2) Anhedonia(Loss of Interest, Pleasure) 3) Anorexia/Wt loss 4) Insomnia or Hypersomnia 5) Psychomotor Agitation or Retardation 6) Fatigue 7) Feelings of Worthlessness/Guilt 8) Indecisiveness/Trouble Concentrating 9) Recurrent Thoughts of Death/Suicide Depression of Alzheimers Olin JT et al. Am J Geriatr Disease (Provisional) Psychiatry 2002;10:125-128 1) Clinically significant depressed mood (sad, hopeless, discouraged, tearful) 2) Decreased positive affect or pleasure to social contact, usual activities

3) Social isolation or withdrawal 4) Disruption in appetite 5) Disruption in sleep 6) Psychomotor changes (e.g. agitation, retardation) 7) Irritability 8) Fatigue or loss of energy 9) Worthlessness, hopelessness, inappropriate guilt 10) Recurrent thoughts of death, suicidal ideation DSM 5 Dementia Cognitive Domains 1) 2) 3) 4)

5) 6) 7) Memory Impairment Language Motor coordination Recognition Executive Function Attention Social Cognition Depression risk for MCI and Dementia At Risk Cases

HR(95% CI) 1209 266 257(21.3%) 47(17.7%) 0.9(0.7-1.2) 1567 155(9.9%)

376 52 (13.8%) All MCI (N=304) No Depression Depressed All Dementia (N=207) No Depression Depression 1.7(1.2-2.3) Richard, E et al JAMA Neurol 2013;70(3):383-389

Depression risk for incident dementia in those with MCI at Baseline All Dementia (N=67) No Depression Depression Vascular (with AD) No Depression Depression At Risk

Cases HR(95% CI) 326 103 45(13.8%) 22(21.4%) 2.0 (1.2-3.4) 285 86

4 (1.4%) 5 (5.8%) 4.3 (1.1- 17) Richard, E et al JAMA Neurol 2013;70(3):383-389 Dementia as Risk for Depression? Research Questions Are rates of depression higher with dementia? Is dementia associated with depression onset? Sample Dataset from 34 Alzheimers Disease Centers, 200513

N = 27,776, 57% women, mean age 73.3 (10.5) 80% White, 14% African-American, 8% Hispanic Snowden, M et al; Am J Geriatric Psych 2015 Sep 23(9):897-905 Findings Normal Cognition N = 10,194 MCI Dementia N = 7,096

N = 10,486 Depression at index (GDS-SF > 5) 5% 14% 17% Depression at index (clinical diagnosis) 18%

35% 43% OR = 2.40 (2.25 2.56) OR = 2.64 (2.43 2.86) 22% 38% 25%

43% Adjusted odds of elevated depression Developing depression over time --2 yrs: -4 yrs: - 10% 20% Snowden, M et al; Am J Geriatric Psych 2015 Sep 23(9):897-905 Explanations for the

Associations Best answer is no one knows. Diagnostic Heterogeneity Depression Differential Dx Major Depression Persistent Depression/Dysthymia Adjustment Disorder depressed Bereavement/Grief Bipolar Mood Disorderdepressed Depression NOS

Dementia Differential Dx Alzheimers Vascular Lewy Body/Parkinsons Frontotemporal Trauma Mixed Dementia NOS Explanations for Associations Large Scale Hypothesis Frailty/Brain reserve as common denominator Frailty

Weakness Slowness Fatigue Low Activity Unintentional weight loss Frailty as Mediator Frailty Depression Dementia Explanations for the Associations

Pathophysiological Vascular disease(e.g. micro-ischemia in neuroimaging) Inflammation(e.g. elevated C-reactive Protein, Interleukin) Stress response(e.g. elevated glucocorticoid) Treatments Meta-analyses increasingly show decreased evidence of antidepressant effectiveness as cognitive impairment increases. Pimontel M, et al, Am J Geriatr Psychiatry 2016; 24:31-41 Nelson JC, Devand DP; J Am Geriatr Soc 2011;59(4):577-85

Randomized Controlled Pragmatic Trial 2007 - 2010 N= 326 subjects Randomized to Control, Sertraline, Mirtazapine 12 wks treatment No benefit of either antidepressant vs placebo At 13 wks At 39 wks Bannerjee, S et al; Lancet, 2011 Jul 30;378(9789):403-11 Community Based Treatments Collaborative Care Treatments (E.g. IMPACT,

PROSPECT, PEARLS) Combine psychosocial treatment with antidepressant Exclude persons with dementia Limited evidence that Tx works for those with MCI Psychosocial Intervention Problem Adaptation Therapy (PATH) N=74 subjects(39 with mild-moderate dementia severity) Major Depression PATH Problem Solving Tx + Environmental Adaptation + Caregiver Involvement

RCT: PATH vs Supportive therapy Remission Rate: PATH= 37.84% vs 13.51% Supportive (p =.02) No difference in remission x dementia category Kiosses D et al; JAMA Psychiatry. 2015;72(1):22-30 Conclusion Depression is associated with incident Dementia Dementia is associated with incident Depression Depression treatment/prevention offers opportunity to Decrease risk for dementia(Depression as Risk Factor) Decrease the severity of dementia (Depression as prodrome)

Depression outside of dementia can be treated effectively Limited evidence base for effective treatment of Depression in Dementia patients Existing evidence points to important role of psychosocial component Resources Alzheimers Association Tools for Early Identification and Treatment brochure_toolsforidassesstreat.pdf Aging and Disability Evidence-Based Programs and Practices (ADEPP) and top tier for the Older Americans Act Title III-D Disease Prevention & Health Promotion

SAMHSAs National Registry of Evidence-Based Programs and Practices (NREPP) AHRQ Healthcare Innovations Exchange PEARLS Evidence Based Treatment for Depression Stay Up to Date on Alzheimers & Dementia Social media Twitter: @Alzheimers_NIH, @ACLgov, @AoAgov Facebook:, YouTube: E-Alerts

CDC: ACL: NIA: Questions? Slides, audio and transcript will be posted on-line, generally within 2 weeks after the live webinar at and /2017/02/2017-alzheimers-and-dementia-webinarsprofessionals Free CEs for this will be available for up to 2 years after the live webinar (through 4/4/2019). 80

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 GA0082. 82 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 030117to 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. 83 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 [email protected] Instructions for Requesting CE (Webcast) (3/1/17-4/3/17): id=6416&Preview=Y Instructions for Requesting CE (Web on Demand) (4/4/174/4/19): id=6417&Preview=Y 84

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