State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map TABLE OF CONTENTS

i Introduction 40 IV. The Healthy Brain Initiative: Developing The Third Road Map ii Action Agenda 43 V. Case Studies

iv Glossary 53 VI. Conclusion 1 I. The Public Health Challenge 55 Appendix A: Leadership Committee, Federal Liaisons & Staff 8 II. Using the Road Map 57 Appendix B: Workgroups, Contributors & Reviewers 15 III. The Action Agenda

16 Educate & Empower 59 Appendix C: Actions by Topic Area

20 Develop Policies & Mobilize 63 Appendix D: References Partnerships

28 Assure a Competent Workforce

36 Monitor & Evaluate Healthy Brain Initiative: The Road Map for Indian Country This Road Map focuses on issues pertinent to state and local public health agencies and their partners. Suggested Citation A companion Healthy Brain Initiative: The Road Alzheimer’s Association and Centers for Disease Control Map for Indian Country has been designed and Prevention. Healthy Brain Initiative, State and specifically for public health systems serving Local Public Health Partnerships to Address Dementia: American Indians and Alaska Natives. The 2018-2023 Road Map. Chicago, IL: Alzheimer’s Association; 2018. INTRODUCTION

The Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC) have developed the third in a series of Healthy Brain Initiative Road Maps to advance cognitive health as an integral component of public health (see Section IV). This Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map outlines how state and local public health agencies and their partners can continue to promote cognitive health, address cognitive impairment for people living in the community, and help meet the needs of caregivers. Twenty-five specific actions are proposed in four traditional domains of public health: educate and empower, develop policies and mobilize partnerships, assure a competent workforce, and monitor and evaluate. This “action agenda” speaks to critical issues of risk identification and risk reduction, diagnosis, education and training, caregivers, and evidence on impact of the disease. Twenty-one of the 25 actions are rooted in the second Road Map, The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018.

Even as new initiatives are pursued, the need for continued attention to earlier identified priorities remains. Collectively, the action agenda provides a solid foundation for the public health community to anticipate and respond to the growing impact of Alzheimer’s and other dementias on every facet of society. The vision is for state and local public health agencies to continue strengthening their capacity, building strong state and local partnerships, and integrating cognitive health into ongoing public health efforts. Moving forward, changes to policies, systems, and environments should be considered to make progress in reducing risk for cognitive decline and optimizing the health, well-being, and functioning of people living with dementia and their caregivers. •

State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map

The first Healthy Brain Initiative Road Map was published in 2007,A National Public Health Road Map to Maintaining Cognitive Health. Six years later, the second edition was released, The Public Health Road Map for State and National Partnerships, 2013-2018. This edition—State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map—marks the third in this series.

i ACTION AGENDA

EDUCATE & DEVELOP POLICIES & EMPOWER MOBILIZE PARTNERSHIPS

E-1 Educate the public about brain health and P-1 Promote the use of effective interventions and cognitive aging, changes that should be discussed with best practices to protect brain health, address cognitive a health professional, and benefits of early detection impairment, and help meet the needs of caregivers for and diagnosis. people with dementia.

E-2 Integrate the best available evidence about brain P-2 Assure academic programs, professional health and cognitive decline risk factors into existing associations, and accreditation and certification entities health communications that promote health and chronic incorporate the best available science about brain condition management for people across the life span. health, cognitive impairment, and dementia caregiving into training for the current and future public health E-3 Increase messaging that emphasizes both the workforces. important role of caregivers in supporting people with dementia and the importance of maintaining caregivers’ P-3 Support better informed decisions by educating health and well-being. policymakers on the basics of cognitive health and impairment, the impact of dementia on caregivers E-4 Promote prevention of abuse, neglect, and and communities, and the role of public health in exploitation of people with dementia. addressing this priority problem.

E-5 Provide information and tools to help people with P-4 Improve inclusion of healthcare quality measures dementia and caregivers anticipate, avert, and respond that address cognitive assessments, the delivery of to challenges that typically arise during the course of care planning to people with diagnosed dementia, and dementia. improved outcomes.

E-6 Strengthen knowledge about, and greater use of, P-5 Engage public and private partners in ongoing care planning and related tools for people in all stages planning efforts to establish services and policies that of dementia. promote supportive communities and workplaces for people with dementia and their caregivers. E-7 Improve access to and use of evidence-informed interventions, services, and supports for people with P-6 Assure public health plans that guide emergency dementia and their caregivers to enhance their health, preparedness and emergency response address well-being, and independence. the special needs of people with dementia and their caregivers, support access to critical health information during crises, and prepare emergency professionals for situations involving people with dementia. ii Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map

ASSURE A COMPETENT MONITOR & EVALUATE WORKFORCE

W-1 Educate public health and healthcare M-1 Implement the Behavioral Risk Factor professionals on sources of reliable information about Surveillance System (BRFSS) optional module for brain health and ways to use the information to inform Cognitive Decline in 2019 or 2020, and the BRFSS those they serve. optional module for Caregiving in 2021 or 2022.

W-2 Ensure that health promotion and chronic M-2 Support national data collection on dementia and disease interventions include messaging for healthcare caregiving. providers that underscores the essential role of Use data gleaned through available surveillance caregivers and the importance of maintaining their M-3 strategies and other sources to inform the public health health and well-being. program and policy response to cognitive health, W-3 Educate public health professionals about impairment, and caregiving. the best available evidence on dementia (including Embed evaluation into training and caregiving detection) and dementia caregiving, the role of M-4 support programs to determine program accessibility, public health, and sources of information, tools, and effectiveness, and impact. assistance to support public health action. M-5 Estimate the gap between workforce capacity and W-4 Foster continuing education to improve healthcare anticipated demand for services to support people with professionals’ ability and willingness to support dementia and their caregivers. early diagnoses and disclosure of dementia, provide effective care planning at all stages of dementia, offer counseling and referral, and engage caregivers, as appropriate, in care management.

W-5 Strengthen the competencies of professionals who deliver healthcare and other care services to people with dementia through interprofessional training and other strategies.

W-6 Educate healthcare professionals about the importance of treating co-morbidities, addressing injury This action agenda provides 25 ways that risks, and attending to behavioral health needs among state and local public health agencies and their people at all stages of dementia. partners can pursue goals of the Healthy Brain W-7 Educate healthcare professionals to be mindful of Initiative. the health risks for caregivers, encourage caregivers’ use of available information and tools, and make referrals to supportive programs and services.

iii GLOSSARY

ALZHEIMER’S DISEASE: an irreversible, progressive goals, and successfully negotiate the world. It can be brain disorder that slowly destroys memory and viewed along a continuum—from optimal functioning thinking skills and, eventually, the ability to carry out to mild cognitive impairment to Alzheimer’s and severe the simplest tasks. Symptoms usually develop slowly dementia. and get worse over time, becoming severe enough to COGNITIVE IMPAIRMENT: trouble remembering, interfere with daily tasks. learning new things, concentrating, or making ALZHEIMER’S DEMENTIA: the dementia stage in the decisions that affect everyday life. Alzheimer’s continuum. DEMENTIA: the loss of cognitive functioning—thinking, BRAIN HEALTH: a concept that involves making the remembering, and reasoning—and behavioral abilities most of the brain’s capacity and helping to reduce to such an extent that it interferes with a person’s daily some risks that occur with aging. Brain health refers life and activities. These functions include memory, to the ability to draw on the strengths of the brain to language skills, visual perception, problem solving, remember, learn, play, concentrate, and maintain a self-management, and the ability to focus and pay clear, active mind. attention. Alzheimer’s is the most common cause of dementia. Other types include vascular dementia, CAREGIVER: spouses, partners, adult children, dementia with Lewy bodies, and frontotemporal other relatives, and friends providing unpaid help dementia. to people living with dementia who have at least one limitation in their activities of daily living and MILD COGNITIVE IMPAIRMENT: a slight but reside in the community. Caregivers often assist with measurable decline in cognitive abilities that includes diverse activities of daily living such as personal care, memory and thinking. A person with mild cognitive household management, medication and healthcare impairment is at an increased risk of developing management, and coordination of financial matters. Alzheimer’s or another dementia.

COGNITION: the mental functions involved in SUBJECTIVE COGNITIVE DECLINE: self-reported attention, thinking, understanding, learning, confusion or memory loss that is happening more remembering, solving problems, and making often or is getting worse. decisions. Cognition is a fundamental aspect of an individual’s ability to engage in activities, accomplish

iv Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map I THE PUBLICHEALTH CHALLENGE cases. of dementia,accountingfor60−80%dementia function. isthemostcommoncause Alzheimer’s symptoms characterizedbythelossofcognitive Dementia isageneraltermusedtodescribe COURSE APPROACH DEMENTIA: ALIFE develop dementia. of peoplewithmildcognitive impairmenteventually cognitive declineandpossibly dementia. A portion and cardiovasculardisease, alsomayreduceriskfor which havebeenshownto preventcancer, diabetes, growing scientificevidencethathealthybehaviors, developing dementia,thisisnotinevitable. There is with mildcognitiveimpairmentisatgreaterriskof loved ones,colleagues,andfriends.Whileaperson or thinkingbecomenoticeabletopersonsaffected, cognitive impairment,whenchangesinmemory pre-symptomatic buteventuallycanresultin physiological changesoccurinthebrainthatare healthy cognitivefunctioning the lifecourse(seeFigure1)thatbeginswith dementias shouldbeviewedasacontinuumacross The courseof diseaseandother Alzheimer’s brain cells. that progressivelydamagesandeventuallydestroys dementia. disease isachroniccondition Alzheimer’s dementia withLewybodies,andfrontotemporal 1 Othertypesincludevasculardementia,

. Overmanyyears, mild

1 I. The Public Health Challenge Figure 1. Life Course Perspective on Alzheimer’s and Other Dementias

Healthy Cognitive Mild Cognitive Pre-symptomatic Dementia Functioning Impairment

Dementia occurs along a continuum. While most older adults have healthy cognitive functioning, some will experience pre-symptomatic changes in the brain that may eventually lead to cognitive impairment or dementia. In dementia, symptoms become noticeable and the disruption to cognition and everyday life can range from mild to severe.

The symptoms of Alzheimer’s and other dementias daily living such as managing medications, dressing, worsen over time, although the rate at which the and bathing. In the final or severe stage of this disease progresses varies. In the early stage of disease, as more neurons involved in cognitive and Alzheimer’s dementia, for example, a person may physical functioning are damaged or destroyed, people function independently, still drive, work, and be part of lose the ability to respond to their environment, have a social activities. Despite this, the person may feel as if conversation and, eventually, control movement. They he or she is having memory lapses, such as forgetting may become bed-bound and require around-the-clock familiar words or the location of everyday objects. care. On average, a person with Alzheimer’s lives four The moderate stage of Alzheimer’s dementia is for to eight years after diagnosis, but can live as long as some the longest stage and can last for many years. 20 years, depending on other factors. During the moderate stage, people may have greater • difficulty performing tasks such as paying bills, but they may still remember significant details about their life. As this stage evolves, people may have more trouble communicating and experience mood or behavior changes. They may also have trouble with activities of

2 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map 10 Early Signs and Symptoms ABOUT ALZHEIMER’S TERMINOLOGY of Alzheimer’s Disease Traditionally, Alzheimer’s disease has been synonymous with dementia. Healthcare providers 1. Memory loss that disrupts daily life often would not diagnose Alzheimer’s unless a person 2. Challenges in planning or solving had certain cognitive and behavioral symptoms problems associated with dementia. Diagnoses might be

delayed for months or years as providers not only 3. Difficulty completing familiar tasks at home, at work, or at leisure ruled out other potential sources of the symptoms but also observed whether dementia-associated 4. Confusion with time or place symptoms worsened. 5. Trouble understanding visual images and spatial relations Now, researchers are adopting a diagnostic framework in which Alzheimer’s disease is identified based on 6. New problems with words in speaking or writing biological changes in the brain and body, even if no symptoms are present. This is because accumulating 7. Misplacing things and losing the ability evidence suggests that dementia is just one stage in to retrace steps the continuum of the Alzheimer’s disease process. 8. Decreased or poor judgment The continuum begins with disease onset and the 9. Withdrawal from work or social activities resulting biological changes that occur without any 10. Changes in mood and personality noticeable decline in cognitive functioning, before progressing over time to mild cognitive impairment with detectable symptoms. Then, at the dementia stage of the Alzheimer’s continuum, symptoms related to cognitive decline and decline of physical function emerge and worsen, progressing from mild to severe.

This Road Map applies new terminology to align with the Alzheimer’s Association that proposes a shift in current scientific understanding. “Alzheimer’s disease” terminology for research use.* refers either to the underlying disease or the entire continuum of the disease. The terms “Alzheimer’s dementia” or “dementia due to Alzheimer’s” describe * Jack CR, Bennett DA, Blennow K, Carrillo MC, Dunn B, the dementia stage in the continuum. This terminology Haeberlein SB & Liu, E. (2018). NIA-AA Research Framework: Toward a biological definition ofAlzheimer ’s disease. Alzheimer’s change is consistent with the 2018 research & Dementia: The Journal of the Alzheimer’s Association, 14(4), framework from the National Institute on Aging and 535-562. A GROWING CRISIS

A review of recent data reveals rapidly increasing trends in the number of people with dementia and associated healthcare costs. Accompanying these trends is the growing challenge to family and friends who are caring for others over extended periods of time.

Alzheimer’s is increasingly understood as a disease that spans many years, with biological changes occurring decades prior to symptom onset.

» Alzheimer’s disease is the sixth leading cause of death in the U.S., and the fifth leading cause of death for those aged 65 and older.1

» Although deaths from other major causes have decreased significantly, records indicate that deaths from Alzheimer's disease have increased significantly.

» Nearly six million Americans are living with Alzheimer’s dementia.1 By 2050, this number is projected to reach nearly 14 million.1

» Younger-onset (also known as early-onset) Alzheimer’s dementia affects an estimated 200,000 people younger than age 65.1

» The science related to Alzheimer’s and other dementias is rapidly evolving. Gaps remain, but best available evidence indicates that opportunities may exist to lessen the burden of the disease on the U.S. population.

4 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map » high andcontinuestorise. The costof andotherdementiasis Alzheimer’s » » multiple chronicconditions. are morelikelythanotherolderadultstohave Older adultswith andotherdementias Alzheimer’s » dollars annually. America, withcostsexceedingaquarteroftrillion Alzheimer hospitalizations andcosts. these otherconditions,resultinginincreased complicates the managementof Alzheimer’s or moreotherchronicconditions. More than95%ofpeoplewithdementiahaveone $1.1 trillion(in2018dollars). By 2050, In Billionsof2018Dollars Costs Projected Alzheimer’s Medicare/Medicaid Private/Out-of-Pocket/Other Alzheimer’s andotherdementiaswillcost Alzheimer’s ’s isthe mostexpensivediseasein $277 2018 $186 1

$300 $202 2020

3 1 2 $357 $239 2025 4 $465 $310 2030 » » verage per-personMedicarespendingforthose » » $402 $603 2035 dementia. payments are23timeshigher. spending acrossallotherolderadults.Medicaid than threetimeshigheraverageper-person with andotherdementiasismore Alzheimer’s A be oneineverythreedollars. people with In2050,itisprojectedto Alzheimer’s. One infiveMedicaredollarsisspentonthecareof $277 billion. caring forthosewith isestimatedat Alzheimer’s In 2018,thedirectcoststo visits forevery1,000Medicarebeneficiarieswith In 2015,therewere1,471emergencydepartment $506 2040 $763 1 1 $609 2045 $920 $1.14 T American societyof 2050 $750 1 1 rillion

5 I. The Public Health Challenge While caring for someone with Alzheimer’s and THE PUBLIC HEALTH ROLE other dementias can be a rewarding experience, it can also be demanding and challenging. This crisis cannot be ignored. Public health has a critical role to play in promoting the cognitive » In 2017, 16 million family members and friends functioning of adults across the life course and provided 18.4 billion hours of unpaid care to addressing soaring costs to healthcare, social, and people with Alzheimer’s and other dementias, at economic systems. By applying its broad community- an economic value of more than $232 billion.1 based approach (see Figure 2), public health can:

» The tasks required of caregivers for people Accelerate risk reduction: Several modifiable risk with dementia can be particularly personal and factors for developing Alzheimer’s disease and other burdensome. Nearly half provide help getting dementias have been identified. Expert panels have in and out of bed. Compared with caregivers called attention to traumatic brain injury, smoking, for people with non-dementia conditions, they diet, physical activity, cardiovascular risk, and other are much more likely to assist with bathing or modifiable factors that also correspond with an overall showering and to deal with incontinence.1 healthy lifestyle and improved quality of life.

» Caregivers for people with Alzheimer’s and other Advance early detection and diagnosis: The dementias are two and a half times more likely earlier dementia is diagnosed, the sooner care can be than caregivers for people with other conditions provided. A formal diagnosis allows people living with to help with emotional or mental challenges and dementia to have access to available symptomatic nearly four times as likely to assist with behavioral treatments and interventions, build a care team, issues.1 participate in support services, and potentially enroll in clinical trials. They and their caregivers can set » About one in three Alzheimer’s caregivers systems in place to better manage medications, report their health has gotten worse due to care receive counseling, and address the challenges responsibilities, compared with one out of five of other chronic conditions. Additional advantages caregivers of other older adults.5 include planning for future financial and legal needs » In all, the physical and emotional impact on and end of life choices. caregivers for people with Alzheimer’s and other dementias resulted in an estimated $11.4 billion in increased caregiver health costs in 2017.1 •

6 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map Ensure safety and quality of care: The challenges own well-being. In addition, public health can help of caring for persons with Alzheimer’s and other improve the health and functioning of people living dementias can become difficult and overwhelming, with dementia by assuring professionals delivering especially when intensive care is needed for long healthcare and other types of care services use periods of time. For many, however, caregiving is also evidence-based guidelines and have sufficient a rewarding experience, bringing family members training. closer together in time of great need. Public health can • play a central role in offering information, guidance, and supportive resources to caregivers to help them provide effective dementia care and attend to their

Figure 2: Life Course Perspective on Alzheimer’s and Other Dementias and the Role of Public Health Across the Entire Population6

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Throughout the dementia continuum (shown in purple), the public health community (shown in blue) can intervene by promoting health behaviors to reduce risk of cognitive decline, encourage early detection and diagnosis of cognitive impairment and dementia, ensure the safety of those with memory issues, and improve the quality of care for those impacted by dementia in their communities. These essential public health activities help reduce burden, improve health outcomes, and promote health and well-being among both people living with dementia and their caregivers.

7 II USING THE ROAD MAP

The Road Map provides an action agenda for the public health community—especially at the state and local level—to respond to the growing dementia crisis through the traditional tools of public health. While the federal government plays a critical role in leading and funding efforts to address Alzheimer’s disease and other dementias, state and local agencies organize and provide public health services at the community level. Many Road Map actions are designed so that state and local agencies can incorporate cognitive health and caregiving issues into ongoing public health efforts. Other Road Map actions aim to help build public health capacity to lead policy, systems, and environmental changes, in part by leveraging strong partnerships.

The Road Map contains a flexible agenda of 25 actions that public health agencies and their partners can pursue over the next five years to address cognitive health and to meet the needs of caregivers. These actions align with Essential Services of Public Health: educate and empower the nation, develop policies and mobilize partnerships, assure a competent workforce, and monitor and evaluate.

8 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map Implementation oftheRoadMapwillbemosteffective incorporating cognitivehealthintotheirwork. health agenciesshouldviewitasaguideto To bestusetheRoadMap,stateandlocalpublic caregivers, andorganizationsthatrepresentthem. This canincludepeoplelivingwithdementia,their stages ofplanning,implementation,andevaluation. experiences withdementiashouldbeinvolvedatall realities, peoplefromdiversebackgroundsand groups. Inaddition,tostaygroundedinday-to-day organizations, andfaith-basedotherspiritual clinical andcommunityproviders,service the agingnetwork,employers,healthsystems, traditional boundariesofpublichealthtoinclude should crossmultiplesectorsandreachbeyondthe at thenational,state,andlocallevels.Partners private, nonprofit,andgovernmentalpartners with participationby, andpartnershipsbetween,

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9 II. Using the Road Map Figure 3. Conceptual Framework for the Healthy Brain Initiative Road Map

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State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map is informed by four Essential Services of Public Health—assure a competent workforce, monitor and evaluate, develop policies and mobilize partnerships, and educate and empower the nation. Action within each of these four domains is guided by three core principles to best eliminate health disparities, collaboration across multiple sectors, and the need to leverage resources for sustained impact.

10 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map 6. 5. 4. 3. 2. 1. Questions toGuideStateand progress beshared? be evaluated?Howandwithwhomwill How willimplementationandimpact and howcantheybesecured? What arepossiblefundingsources, implement actions? current partnershipsbeleveragedto Who arepotentialpartners?Canany any newinitiativesneeded? integrated intoexistinginitiatives? How canidentifiedactionsbestbe reasonable andrelevantsetofactions? information beusedtoidentifya How canavailabledataandother capabilities? or localpriorities,opportunities,and Which RoadMapactionsbestfitstate Planning RoadMap Local PublicHealthin Actions Are most risk. and recommendedfocusingonthosepopulationsat Strategy calledfortheeliminationofhealthdisparities disparities stillexist. have beenmadeintheU.S.lasttwodecades, health promotionactivities. Although significantstrides remains anintegralpartofdiseasepreventionand the U.S.populationwhilealsoeliminatingdisparities Eliminate healthdisparities. reports. health andhavebeennotedbymanyotherseminal resources forsustainedimpact—arecentraltopublic collaborate acrossmultiplesectors,andleverage 3). These principles—eliminatehealthdisparities, and implementingRoadMapactions(seeFigure attention tothreefundamentalprinciplesinplanning andotherdementiaswillrequirediligent Alzheimer’s Effectively addressingtherisingnumberofpeoplewith CORE PRINCIPLESFORTHEROADMAP people andtheircaregivers.” culturally, linguistically, andageappropriate for disparities; andimplementing strategiesthatare of healthcareandprevention workerstoaddress access topreventiveservices; increasingthecapacity partnerships thatcreatehealthparity;increasing “to reducehealthdisparitiesbybuildingcommunity Prevention Council),thereportcallsoncommunities Promotion, andPublicHealthCouncil(National direction. PreparedbytheNationalPrevention,Health includes eliminationofhealthdisparitiesasastrategic in Actionreport,which is reflectedintheHealthyAging The publichealthcommitmenttoeliminatingdisparities effort central toaccomplishing plangoals. and eliminating healthdisparities,andconsider the stateplansalsocall forreducingbarriers Alzheimer’s 8 7 The 2011 NationalPrevention 9 Inasimilarvein,many Optimizinghealthfor 11 II. Using the Road Map Major strides in improving the nation’s health can best (such as cardiovascular health, infectious diseases, occur by focusing on communities at greatest risk and and other relevant conditions) can also be highly eliminating barriers to quality healthcare services.10,11 effective in achieving similar outcomes. Cognitive health is no exception. In implementing the actions in this Road Map, public health should Leverage resources for sustained impact. The challenges inherent in tackling dementia and consider concentrating resources on populations who improving cognitive health far exceed the capacity are underserved, are more vulnerable, or suffer a of the public health sector alone. True and sustained disproportionate burden of disease. progress depends on building collaborative public Collaborate across multiple sectors. Implementation and private sector partnerships to leverage resources of the Road Map requires collaborations between toward accomplishing common Healthy Brain Initiative the public health community and wide array of goals, promote widespread diffusion of an evidence- organizations at national, state, and local levels and based model, or invest in capacity. Such resources in both public and private sectors. The need for and can take many forms: physical, such as spaces, value of such cross-sector collaboration has gained tools, and materials; financial, such as direct funding increasing attention as an essential component of any or discounts; social, such as networks of people or strategy for improving health and well-being.12 organizations, norms, shared understanding, and Yet much work remains to realize its potential. trust; and intellectual, such as data, skills, knowledge, time, and competencies of stakeholders. The National The Robert Wood Johnson Foundation’s Culture Academy of Medicine’s Vital Directions for Health 13 of Health Action Framework links cross-sector and Health Care15 calls for building collaborations to collaboration to making long-term gains in population mobilize resources for health improvement. Expanding health. Key factors for effective and sustained cross- the range of existing and new resources not only sector collaborations are: the number, breadth, and has synergistic benefits but also supports scales that quality of cross-sector partnerships; the adequacy of would be beyond the reach of a single organization investment in these partnerships; and the adoption of and helps ensure sustainability. policies needed to support them.14 Thus, a deliberate • and coordinated approach to cognition and caregiving would cultivate partnerships that transcend traditional boundaries—especially between public health and aging networks, employers, health systems, clinical and community providers, community service organizations, and faith-based and other spiritual groups. Collaboration across programs focused on prevention and management of specific diseases

12 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map Examples of Public Health Implementation of Road Map Actions

Chapter V contains recent examples of strategies used by state public health agencies to address cognitive health and caregiving. Many other examples and resources to help the public health community implement the Road Map are available at: alz.org/publichealth

13 SPOTLIGHT

DISPARITIES BY RACE/ETHNICITY AND GENDER

Disparities in the risk of developing Alzheimer’s and Missed diagnoses of dementia are more common other dementias are most prominent among African among African Americans than whites. While Americans, Hispanics, and women. African Americans are two times more likely to have Alzheimer’s or another dementia than whites, they are African Americans and Hispanics only 36% more likely to receive a diagnosis.17 Also, » One in seven African Americans aged 45 and older both African Americans and Hispanics with cognitive have subjective cognitive decline.16 impairment are less likely than whites to say that a doctor has told them they have a “memory-related » Older African Americans are about two times more disease.”18 likely than older whites to have Alzheimer’s or other dementias.1 Women

» Older Hispanics are about one and one-half times » Almost two-thirds of older Americans with 1 more likely than older whites to have Alzheimer’s or Alzheimer’s dementia are women. other dementias.1 » Among those aged 71 and older, 16% of women Variations in health, lifestyle, and socioeconomics likely have Alzheimer’s or other dementias, compared 19 account for most of the difference in risk by race and with 11% of men. ethnicity. High blood pressure and diabetes, which are » At age 65, women without Alzheimer’s have more risk factors for dementia, are more prevalent in African than a one in five chance of developing Alzheimer’s American and Hispanic populations than in whites. dementia during the remainder of their lives, Lower levels of education and greater levels of other compared with a one in nine chance for men.20 socioeconomic characteristics and risk factors (such as poverty, adversity in early life, and access to quality These disparities may be primarily explained by the care) among some racial and ethnic minorities may fact that women live longer, on average, than men. also contribute to increased risk. In addition, African However, researchers are increasingly questioning Americans with subjective cognitive decline often have whether there may be other reasons for the difference other health challenges that may complicate care, such in the number of women compared with men who as physical inactivity, tobacco use, and living alone.1 develop the disease. •

14 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map III THE ACTIONAGENDA into therolesthatpublichealth canplay Text accompanyingthe actionsof importance ofpursuingeach groupofactions. data makethecaseforurgencyand outcome theyshareincommon.Compelling Actions arefurtherdividedbythedesired Services ofPublicHealth: caregivers. Actions aregroupedbyfourEssential address cognitivehealthandmeettheneedsof could pursueoverthenextfiveyearsto local publichealthagenciesandtheirpartners This sectionpresentsactionsthatstateand M =MONITOR &EVALUATE WORKFORCE W = MOBILIZE PARTNERSHIPS P EMPOWER E =EDUCATE & =DEVELOP POLICIES&

ASSURE ACOMPETENT

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15 III. The Action Agenda E = EDUCATE & EMPOWER

Outcome: Public education is a fundamental public health role. INFORMED PUBLIC Helping people take actions to promote cognitive health requires clear and consistent messages about E-1 Educate the public about brain health and what is known—and what is yet to be discovered. cognitive aging, changes that should be Target audiences include but are not limited to: discussed with a health professional, and older adults, adult children, employers, and people benefits of early detection and diagnosis. supporting an older neighbor or friend.

E-2 Integrate the best available evidence about Sharing accurate information using culturally- brain health and cognitive decline risk appropriate health communications techniques would factors into existing health communications seek to: that promote health and chronic condition management for people across the life span. » Raise awareness about brain health and changes in cognition that merit a conversation with a E-3 Increase messaging that emphasizes both healthcare professional; the important role of caregivers in supporting people with dementia and the » Shift mindsets and normalize discussions importance of maintaining caregivers’ health about cognitive health in the routine delivery and well-being. of healthcare to support early detection and modification of risk factors; E-4 Promote prevention of abuse, neglect, and exploitation of people with dementia. » Improve access to available information, care planning, and community services to support physical and behavioral health as well as social, legal, financial, and spiritual needs; and

» Reduce stigmas and myths surrounding the In South Carolina, an awareness disease. campaign educated the public on brain health and risk reduction. Learn more on page 44.

16 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map recommended inthe and othercommunity-based organizationsas law enforcement,agingnetwork serviceproviders, through partnershipswithadult protectiveservices, strive topreventabuse,neglect,andexploitation education, thepublichealthcommunitycanactively of dailylivinggraduallydeclines.Beyondpublic dementia, especiallyasabilitytoperformactivities the riskofself-neglectforpeoplelivingalonewith seeking help.Cognitiveimpairmentmayalsoincrease communication problemscanhinderreportingor have difficultyprotectingthemselves;inaddition, may notrecognizeactionsthatcouldbeharmfuland to eldermistreatment. A personlivingwithdementia can becomeincreasinglyvulnerabletofallingvictim dementia. As cognitiveimpairmentworsens,people (including financialexploitation)ofpeoplelivingwith of preventingabuse,neglect,andexploitation Educating thepublicisalsoaneededcomponent » » » » » health promotionactivitiesinsuchareasas: dementia andcognitivedeclineriskmessagingto and physicalhealth. This couldbedoneby linking awareness abouttheinterplaybetweenbrainhealth Public healthhasstrengthsandcapacitiestoadvance Injury prevention. Obesity preventionandcontrol; Diabetes preventionandmanagement; Cardiovascular healthmanagement; Tobacco preventionandcontrol; Elder JusticeRoadmap. 21

• » » » questions, concerns,andfears. with ahealthcareproviderabouttheir cognitive declinehavenottalked aged 45andolderwithsubjective have thedisease. dementia, only35%areaware thatthey adults whohavebeendiagnosedwith diagnosed byaphysician. of peoplewithdementiahavebeen Evidence indicatesthatlessthanhalf disease. cause ofthesymptomswas loss, theywouldwanttoknowifthe were exhibitingconfusionandmemory Nearly 90%of dementias. someone with who careforanolderadult dosofor Nearly halfofallcaregivers (48%) COMPELLING DA Y et, overhalfofthepeople 1 Alzheimer Americans saythatifthey 22 ’ s andother Among older Alzheimer T A 1 ’ s 17 III. The Action Agenda Outcome: The challenges facing people with dementia and their INFORMED PEOPLE WITH DEMENTIA caregivers can be daunting. Public health can help AND CAREGIVERS raise awareness about these challenges and the need to improve quality of life, safety, and well-being among E-5 Provide information and tools to help people people with dementia and their caregivers. with dementia and caregivers anticipate, avert, and respond to challenges that Public health can also facilitate access to affordable, typically arise during the course evidence-informed services, programs, interventions, of dementia. and supports to reduce stress and improve coping, self-efficacy, and overall health. Well-designed E-6 Strengthen knowledge about, and greater programs have been shown to benefit persons with use of, care planning and related tools for dementia and caregivers, and should be readily people in all stages of dementia. accessible. Similarly, reliable information and tools that feature best practices should be widely distributed. E-7 Improve access to and use of evidence- Access to these programs and tools is particularly informed interventions, services, and crucial for people with dementia who live alone. supports for people with dementia and their caregivers to enhance their health, Caregivers would benefit from compelling and easy- well-being, and independence. to-use content about how to enhance their own health while caring for their loved ones. Some of the many resources that public health can help expand, promote, or tailor to specific populations include:

» Community-based programs for physical activity, chronic disease self-care, and caregiver education;

» Peer support groups and social gatherings for people affected by dementia;

» Online support and information resource centers; Efforts in Washington and Puerto Rico increased dementia awareness among » Apps for caregivers and persons living with traditionally underserved populations. dementia and GPS tracking devices; Learn more on pages 45–46.

18 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map » » » » » Information andreferralservices. Transportation services;and Advanced careandadvancedfinancialplanning; Adult daycareandrespitecare; programs; Home healthcareservicesandhomemodification promoted. Learnmoreonpage 47. benefits ofadvancecareplanning were local partnershipsacrossMaryland, the Through communityengagement and • » » » » » » andotherdementias: Alzheimer’s Among caregiversforpeoplewith

people withoutdementia. compared to19%ofcaregiversforolder worse duetocareresponsibilities, 35% reportthattheirhealthhasgotten provided careforfourormoreyears. past year 86% haveprovidedcareforatleastthe adults without dementia. three timesmore likelytofallthanolder Older adultswithdementia aretwoto as 40%reportsymptomsofdepression. caregiving ashighorveryhigh. Nearly 60%ratetheemotionalstressof an olderadultandachild. generation” caregivers—caringforboth Nearly oneinfourare“sandwich caregivers forpeoplewith The physicalandemotionalimpacton caregiver healthcostsin2017. estimated $1 and otherdementiasresulted inan COMPELLING DA , andwelloverhalf(57%)had 1.4 billioninincreased 23 1

1 Alzheimer T A 1 As many ’ 1 s 1 19 III. The Action Agenda P = DEVELOP POLICIES & MOBILIZE PARTNERSHIPS

Outcome: The science of brain health and dementia will continue SCIENCE TRANSLATED INTO PRACTICE to evolve during the five-year time span of this Road AND POLICIES Map. It is incumbent on public health to understand the implications of the best available evidence and to P-1 Promote the use of effective interventions promote rapid integration into policies and practice. and best practices to protect brain health, One tool for developing public health knowledge is address cognitive impairment, and help the free curriculum for undergraduate courses in meet the needs of caregivers for people with schools of public health, A Public Health Approach to dementia. Alzheimer’s and Other Dementias, from CDC and the Alzheimer’s Association. P-2 Assure academic programs, professional associations, and accreditation and An important opportunity for systemic change is certification entities incorporate the influencing academic standards, through partnerships best available science about brain health, with local accrediting bodies, for future workforces cognitive impairment, and dementia of physicians, nurses, public health professionals, caregiving into training for the current and social workers, direct care workers, etc. Changes in future public health workforces. science may necessitate ongoing education of policy and business leaders to update their understanding of P-3 Support better informed decisions by the economic, public health, and social implications of educating policymakers on the basics of dementia. cognitive health and impairment, the impact of dementia on caregivers and communities, Planning and policy initiatives provide additional and the role of public health in addressing opportunities to integrate cognitive health and to this priority problem. engage additional state and local partners. In particular, the process of updating state Alzheimer’s P-4 Improve inclusion of healthcare quality plans enables governmental and private sector measures that address cognitive partners to understand challenges encountered assessments, the delivery of care planning by people with dementia and caregivers especially to people with diagnosed dementia, and in underserved communities, to examine potential improved outcomes. policies in a concerted fashion, and to leverage partners’ resources (tangible and intangible).

20 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map » » » » » » related measures: opportunities forstatepublichealthtousedementia- The followingprogramsandsettingsprovide and measureconceptsinthecomingyears. may developorendorseadditionalqualitymeasures Further, theNationalQualityForumandotherexperts and the American Psychiatric Association Work Group. Improvement, the American Academy ofNeurology, by thePhysicianConsortiumforPerformance Measures specifictodementiahavebeendeveloped use ofqualitymeasurestotrackprogress. Another areafortranslatingscienceintoactionisthe (e.g. homehealth,hospice). community-based services) andambulatorycare Long-term caredatasets(e.g. institutionaland included inMIPS);and Physician QualityReportingSystem(PQRS,now Reporting Programs; Medicare HospitalInpatientandOutpatientQuality data sets; State hospitalandemergencydepartment(ED) Incentive PaymentSystem(MIPS); Quality PaymentProgramfortheMerit-Based Centers forMedicare&MedicaidServices(CMS) core set); payment andencounterdatasets,Medicaidadult State healthcarequalityinitiatives(e.g.,Medicaid •

» » » navigate careandservices. people withdementiaandtheircaregivers people with andhowtohelp Alzheimer’s, diagnose thedisease,howtointeractwith healthcare workersonhowtodetectand general, thereisalackofknowledgeamong on dementiaasapublichealthissue.In workforce hadlittleornoformalpreparation The currentpublichealthandhealthcare training. social workershavespecializedgeriatric adults aged55andolder Despite predominantlyworkingwith have specializedingeriatriccare. physician assistants,andpharmacists Less than1%ofregisterednurses, to theneedsofolderadults. enter theworkforcewithlittle exposure training, whichmeansthat mostwill choose geriatricelectivesduring their Less than3%ofmedicalstudents COMPELLING DA 24 , only4%of 25 T A 24 21 III. The Action Agenda SPOTLIGHT

PUBLIC HEALTH ROLE IN DEMENTIA-FRIENDLY COMMUNITIES

The establishment of dementia-friendly communities is living with dementia and their caregivers are crucial a growing movement in the U.S. and around the world. to effective planning, and they can be compelling The movement mobilizes government, businesses, advocates for implementation. Plans should set and civic groups to form a coalition and pledge to measurable objectives and designate stakeholders actively make changes to support people living responsible for achieving progress toward goals. with dementia and their caregivers. State and local How can public health contribute to the dementia- public health organizations are uniquely positioned friendly communities movement? The actions in this to become coalition partners and to help evaluate Road Map are ways public health and its partners can progress toward goals. help ensure affected people have safe, supportive Currently, about 70% of people with Alzheimer’s and environments. Action P-5 calls on public health other dementias live in community settings, with an to “engage public and private partners in ongoing estimated one-quarter of them living alone. A common planning efforts to establish services and policies that preference for persons with dementia is to remain as promote supportive communities and workplaces.” engaged and independent for as long as possible. Additional actions to support dementia-friendly Supports that may help people living with dementia communities include: stay active and engaged can range from access to Educate the public (E-1, E-3); public transportation, interaction with service providers » and friends that use effective communications » Analyze the community support needs of people techniques, as well as opportunities to be involved in living with dementia and their caregivers (M-3, community life. As cognitive and physical impairment M-5); progresses, high-quality healthcare and home- and community-based services become more important to » Promote the use of evidence-informed practices well-being. Around-the-clock care may be necessary and educational resources (E-6, E-7); and for people in the final stages ofAlzheimer ’s dementia » Build the knowledge and skills of professionals as they tend to become bed-bound. who interact with people living with dementia and To realize their potential, coalitions need a plan to their caregivers (W-2, W-5, W-6). • change neighborhood environments and mobilize partners to adopt promising practices for supporting people affected by dementia. Insights from people

22 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map SPOTLIGHT

TRANSLATING EVIDENCE THROUGH THE HEALTHY BRAIN RESEARCH NETWORK

The Healthy Brain Research Network (HBRN) is a relatives who thematic public health research network that brings need information together interdisciplinary expertise from six leading about the next academic institutions across the United States: step. The HBRN University of Washington (UW) (coordinating center); developed and Oregon Health & Science University; University of tested culturally- Arizona; University of Illinois at Chicago; University of relevant messages Pennsylvania; and University of South Carolina. for adult men CDC created the HBRN in 2014 to: and women from diverse racial and

» Establish and advance a public health research, ethnic groups.26,27 translation, and dissemination agenda that HBRN centers promotes cognitive health and healthy aging, collaborated in addresses cognitive impairment, and helps meet testing messages the needs of caregivers; to increase » Build a strong evidence base for policy, relevance and generalizability. The resulting research- communication, and programmatic interventions; tested messages encouraged adults to accompany their parents to healthcare appointments if they have » Collaborate with public health agencies and their concerns about their parents’ memory. partners to accelerate effective practices in states and communities; and Another important priority of the HBRN is workforce development. From 2014 to 2017, the network trained » Build the capacity of public health professionals 33 scholars from undergraduate, graduate, and post- through training opportunities. doctoral programs in nursing, medicine, public health, communications, and social work. The scholars were The HBRN plays an important role in translating predominantly female (78%) and non-white (60%). evidence into policies and programs. As just one The HBRN scholars reported increased knowledge example, the HBRN center at the University of about and commitment to cognitive health, and have Pennsylvania initiated a project to increase early contributed to the field by presenting at conferences, identification and intervention by targeting adult authoring scholarly publications, and serving on children concerned about their aging parents or older interdisciplinary research teams. •

23 Outcome: Most people with dementia (especially before the late SUPPORTIVE COMMUNITIES stages) can remain involved in their communities— AND WORKPLACES and, with appropriate support, they can have better outcomes and quality of life at lower costs than if they P-5 Engage public and private partners in become isolated or institutionalized.28 Unfortunately, ongoing planning efforts to establish many practicing healthcare professionals have services and policies that promote received limited training on how to interact effectively supportive communities and workplaces for with people living with Alzheimer’s and other people with dementia and their caregivers. dementias. The healthcare provider community also lacks knowledge about what small changes in daily P-6 Assure public health plans that guide practices a person with dementia can make to help emergency preparedness and emergency them remain independent and engaged.29,30 Public response address the special needs of health can address these challenges by going beyond people with dementia and their caregivers, healthcare and direct support systems to mobilize support access to critical health information community action at all levels, beginning with insights during crises, and prepare emergency from and action by people with dementia and their professionals for situations involving people caregivers. with dementia. Specifically, the public health community can:

» Assess community and workplace support needs of people with dementia and their caregivers;

» Bring together multiple community players— local businesses, public service providers, area agencies on aging, community service organizations, faith-based and other spiritual groups, and community residents—to create new partnerships, develop action plans, and build support systems for people with Alzheimer’s and other dementias and caregivers;

» Consider currently available tools and resources such as those developed by dementia-friendly community efforts; and

24 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map cognitive impairment. symptoms ofdementia,orconditionsthatcanmimic shelter staff couldbenefitfromtrainingaboutsignsand impairment. Further, emergencyrespondersand with dementia,caregivers,andexpertsoncognitive public healthagenciescanelicitinsightsfrompeople consider theparticularvulnerabilitiesofthispopulation, To helpensurethatlocalandstatepreparednessplans » communities. etc.) totakepeopledestinationsintheir transportation options(volunteerdriverprograms, public spacesduringevents,andsupportive strategies, suchasclearlymarkedsignage,quiet Promote theuseofsupportivepracticesand with dementia.Learnmoreon page48. compassionately servepeople living received trainingonwaystosafely and Across Colorado,firstresponders •

» » » » and hurricanes. during naturaldisasterssuch asfloods dementia areparticularlyvulnerable telecommuting. assistance programs,and22%allow paid familyleave,23%of work hours/paidsickdays,32%of support caregivers:53%of Only halfofemployershavepoliciesthat quarter livingalone. the community Alzheimer Approximately 70%ofpeoplewith dementia. training forlawenforcement regarding as of2015,only10states require Alzheimer Although amajorityofpeoplewith caregivers forpeoplewith income, andfinancialsecurity have anegativeef Caring forpeoplewith caregiving. down apromotionduetotheburdenof a leaveofabsence,and8%turned to gofromfullparttime,16%took responsibilities. Inaddition,18%had time of to goinlate,leaveearly full orparttime,57%saidtheyhad and otherdementiaswhoareemployed COMPELLING DA f becauseoftheircaregiving 32 ’ ’ s andotherdementiaslivein s willwanderatsomepoint, 1

Additionally , withanestimatedone- 31 33,34 fect onemployment, 1 Alzheimer , peoplewith , ortake fer employee Alzheimer fer flexible . T Among A ’ s can fer ’ s 25 III. The Action Agenda SPOTLIGHT

USING STATE PLANS ON ALZHEIMER’S AND OTHER DEMENTIAS

State and local dementia plans aim to build the With the rapidly growing and changing nature of the infrastructure and accountability for policies, services, Alzheimer’s crisis, it is essential that state dementia and programs to mitigate the burden of dementia. plans are living documents that stakeholders A comprehensive state plan helps to unite key implement, monitor, and periodically update. Public stakeholders and public health partners—including health is an essential partner in leading these efforts. people living with dementia and caregivers—around a • range of issues. State plans often focus on:

» Tailoring supports for people affected by dementia;

» Using data and analyses to inform the state response and track progress on priorities;

» Assuring quality of long-term care;

» Providing home- and community-based services;

» Helping identify and track the availability of diagnostic services;

» Protecting the safety of persons who wander; and

» Supporting caregivers and healthcare professionals.

As of April 2018, 48 states and territories have published Alzheimer’s disease plans and a few cities and counties have created regional plans. Nearly all of the published plans include public health recommendations and strategies for public awareness, Montana Governor Steve Bullock, Alzheimer’s Association early detection, education about brain health, and Montana Chapter Policy Lead Nick Hart, and Montana monitoring the burden of cognitive decline and Lieutenant Governor Mike Cooney (left to right) pose with the Montana Alzheimer’s and Dementia State Plan in March caregiving. A majority of state plans highlight early 2017. Photo credit: Brittney Kuntz. detection and diagnosis as an essential component.

W = ASSURE A COMPETENT WORKFORCE

Outcome: functioning and caregiving into existing health IMPROVED PRACTICE IN PROMOTING promotion and chronic disease efforts has the potential HEALTH AND REDUCING RISK to increase the reliability of care and related outcomes.

W-1 Educate public health and healthcare The Geriatric Workforce Enhancement Program professionals on sources of reliable (GWEP), supported by the Health Resources and information about brain health and ways to Services Administration (HRSA), a federal agency, is a use the information to inform those valuable resource to educate healthcare professionals. they serve. Currently, 44 GWEP centers specialize in integrating geriatrics with primary care and are charged with W-2 Ensure that health promotion and chronic developing a healthcare workforce that maximizes disease interventions include messaging for patient and family engagement and improves health healthcare providers that underscores the outcomes for older adults.35 The centers are mostly essential role of caregivers and the based in schools of medicine, nursing, allied health, importance of maintaining their health and and social work. well-being. •

Public health increasingly works side-by-side with an array of healthcare organizations to improve the health of communities. Sometimes this is through partnerships with federally qualified health centers (FQHCs), Medicaid providers, nonprofit hospitals, and health plans. Public health and healthcare professionals need materials they can share with consumers, especially credible information on brain health and ways to reduce risk of cognitive decline. Outreach to health professionals can call attention to Caregivers in New Mexico learned the importance of supporting caregivers’ health and how to better manage their own health their role in managing dementia and other chronic through two community education programs. Learn more on page 49. conditions and ensuring safety. Integrating cognitive

28 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map COMPELLING DATA

» More than 85% of people with Alzheimer’s and other dementias have one or more additional chronic condition(s), and cognitive impairment often complicates the management and treatment of those conditions.1

» The current public health workforce has had little or no formal preparation on dementia as a public health issue.

» Older adults with dementia have twice as many hospital stays each year as those without dementia and spend, on average, more than 22 days in a hospital or skilled nursing facility each year compared with an overall average for older adults of less than five days.1

» As of 2015, only two states require training in dementia for registered nurses, licensed practical nurses, and licensed vocational nurses.36

29 Outcome: Public health can impact early detection and diagnosis IMPROVED EARLY DETECTION by developing professional competencies needed AND DIAGNOSIS to effectively and compassionately interact with and assess people with cognitive impairment and their W-3 Educate public health professionals about caregivers. For timely and accurate early detection the best available evidence on dementia to occur—and subsequent diagnosis and disclosure (including detection) and dementia awareness—adults must feel comfortable discussing caregiving, the role of public health, and symptoms and concerns with their healthcare sources of information, tools, and assistance providers. This requires addressing barriers such as to support public health action. low public awareness of the early signs of Alzheimer’s, emotional distress of Alzheimer’s and other dementias W-4 Foster continuing education to improve on family members, and misperceptions about healthcare professionals’ ability and Alzheimer’s and other dementias.37.38 In addition, willingness to support early diagnoses and public health should consider addressing obstacles disclosure of dementia, provide effective faced by physicians such as: low recognition of care planning at all stages of dementia, offer the signs of cognitive impairment, confusion with counseling and referral, and engage conditions that may mimic dementia (including caregivers, as appropriate, in care delirium, certain vitamin deficiencies, and depression), management. limited education or training on dementia care, concerns about stigma and the usefulness of an early diagnosis, lack of time, and difficulty talking about dementia or disclosing a diagnosis.39,40,41,42 A statewide assessment in Utah helped increase promotion of early Strategies are needed to equip public health detection and diagnosis tools. Learn professionals with sound and credible information so more on page 50. that they are well informed when communicating with other healthcare providers and payers. Educational initiatives involving academic institutions, clinical practices, and caregiver organizations can enhance healthcare providers’ knowledge and abilities, especially when these collaborations extend to

30 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map » » » » » » Important areasforeducationinclude: to shiftstandardsofpracticeandculturalnorms. and community-clinicallinkageshavethepotential continuing education,practicaltoolsandresources, credentialing oraccreditation. A combinationof Curriculum Related DementiasCurriculum training suchasHRSA Gerontological Societyof such astheKAERtoolkitsdevelopedby clinical assessmenttools,guidanceandtoolkits A other chronicconditionsinhigh-riskcases; populations’ Benefits ofactivelymonitoringhigh-risk diagnosis, andthecareplanningbillingcode); benefit, availabilityofservicesandsupportsaftera Annual W dementia (includingtheavailabilityofMedicare diagnosis, documentationofandcare Importance ofandopportunitiesforearlydetection, dementias asaproblem; Under-diagnosis of diagnoses can takeanemotionaltoll. professionals becausedisclosingdementia Importance compassionate fordif are culturally-appropriate, candid, clear and resourcereferralinformation inwaysthat Ef social services; accurate diagnoses,andcommunity-based vailability ofresourcesincludingvalidated fective strategiestoconvey detection,diagnosis, ellness V , 44 of cognition,similartomonitoringof consultativesupportformaking using isit’ Alzheimer support ferent populations;and s cognitiveassessment ’ s Alzheimer America, systems ’ s diseaseandother and 43 ’ s Diseaseand Caregiving online for • , and

healthcare

» » » » their medicalrecords. have theirdiagnosesdocumentedin with medical records.Lessthanhalfofthose documentation ofcognitivedeclinein evidenced bythelowrateof Physicians facebarriersaswell, healthcare provider not discussedtheirsymptomswitha decline intheprevious12monthshad older whoreportedsubjectivecognitive Over half(55%)ofadultsage45and changes withahealthcareprovider Adults arereluctanttodiscusscognitive 40% didnotthinkitwasfatal. person withdementia. conditions—potentially and bettermanagementof chronic through reducedhospitalizations costs acrossthenation,particularly diagnosis cangreatlyreduce healthcare Economic modelingshowsthatearly Alzheimer respondents incorrectlybelievedthat In asurveyof12countries,59% shared theseissueswithaprovider functional difficulties,42%hadnot whose memoryproblemswerecreating COMPELLING DA Alzheimer ’ s isatypicalpartofagingand ’ s andotherdementias . 47

47,48 1 Among those up

to T $64,000 45 A . . 46 per 31 III. The Action Agenda Outcome: Public health has a critical role in educating a IMPROVED PROFESSIONAL CARE FOR broad array of providers who care for people with PEOPLE WITH DEMENTIA dementia: nurses, home health professionals, social workers, pharmacists, physicians, community health W-5 Strengthen the competencies of workers, and more. Each profession has specialized professionals who deliver healthcare and knowledge and competencies that, if shared, could other care services to people with dementia help other professionals become more effective in their through interprofessional training and particular roles. Interprofessional training that involves other strategies. professionals from different disciplines can facilitate greater appreciation for others’ contributions and W-6 Educate healthcare professionals about the improve working relationships. Because Alzheimer’s importance of treating co-morbidities, dementia complicates the management of chronic addressing injury risks, and attending to diseases, care planning—particularly when it is done behavioral health needs among people at all by interdisciplinary teams—is key to coordinating and stages of dementia. managing care. Care planning allows people with W-7 Educate healthcare professionals to be dementia diagnoses and their caregivers to receive a mindful of the health risks for caregivers, comprehensive assessment, learn about medical and encourage caregivers’ use of available non-medical treatments, and secure relevant services information and tools, and make referrals to in the community that can support a higher quality supportive programs and services. of life. People receiving care planning specifically geared toward dementia have fewer hospitalizations, fewer emergency room visits, and better medication management.49

The Current Procedural Terminology (CPT) billing code 99483 allows clinicians to be reimbursed for providing comprehensive care planning to cognitively impaired Home, community, and long-term care professionals in Utah enhanced their people. Effective since 2017, the code requires knowledge and skills to better care clinicians to provide detailed, person-centered care for people living with dementia. Learn planning, caregiver assessments, and referrals to more on page 51. community resources. Public health efforts to ensure

32 handle theprojectedgaps. equipping primarycarephysiciansandcaregiversto more resources,training,andeducationwillbevitalfor With therapidriseinageofU.S.population, their caregivers. care andqualityoflifeforpeoplewithdementia systematic deliveryofthisservicewouldlikelyimprove • » » » » only forpersonnelin states thatdidrequiretraining didso nursing homes,andthemajority of required dementiatraining forstaf licensed homehealth aides. staf required dementia trainingforadultday care units.Further dementia was total Medicarecostsforpeoplewith beneficiaries withoutdementia.In2018, more thanthreetimeshigherfor on beneficiarieswithdementiais average per-personMedicarespending of multiplechronicconditions. Alzheimer Care andtreatmentforpeoplewith dementias. in peoplewith shortage ofneurologistsandarapidrise neurology “deserts”duetoachronic T a stroke. 37% havediabetes,and22%had hypertension, 38%haveheartdisease, Alzheimer with chronic conditionsamongpeople Cardiovascular diseasesarecommon Alzheimer with theuniqueneedsofthose prepare healthcareworkerstodeal Current trainingdoesnotadequately symptoms ofdepression. people withdiagnosesofdementiahad wenty statesareconsideredtobe f, andonly13 statesrequireditfor COMPELLING DA Alzheimer 1 Onesmallstudyfound29%of ’ ’ ’ s isexpensive,partlybecause s andotherdementiashave s. 50 As of2015,only23states Alzheimer an ’ s: 73%ofpeoplewith estimated , only19states Alzheimer ’ s andother 51 52 $140 T The A ’ s special f of billion. 1 33 III. The Action Agenda SPOTLIGHT

PARTNERING WITH FAITH-BASED GROUPS

The Balm In Gilead, Inc. builds and strengthens the developed a brain health website that provides capacity of African American faith communities to culturally-tailored information for African Americans deliver programs and services that contribute to the and others. To bring information and education into elimination of health disparities. The organization communities, The Balm In Gilead initiated the Memory develops educational and training programs Sunday campaign. On the second Sunday of June, specifically designed to establish sustainable, congregations nationwide educate their members integrated systems of public health and faith principles, about brain health, treatment, and research on which helps to improve health outcomes of individuals Alzheimer’s, and dementia caregiving for persons living in urban, rural and remote communities. In living with dementia. Faith communities that sign 2015, the Centers for Disease Control and Prevention up for Memory Sunday can access a toolkit, obtain awarded a five-year cooperative agreement to The promotional materials, and receive training. In a more Balm In Gilead, enabling the nonprofit agency to recent phase of work, The Balm in Gilead began develop The National Brain Health Center for African assisting regional health ministries with finding ways Americans. The Center’s objectives are to: to integrate cognitive health into their year-round health ministry work. Recognizing the important role » Raise awareness of the issues affecting cognitive health among African Americans by building the of healthcare professionals, especially physicians capacity of African American congregations to and nurses, The Balm In Gilead created training become an integral partner in prevention, disease regarding the increased physical and societal burdens management, caregiving, and engagement in associated with Alzheimer’s and other dementias clinical studies; within the African American community. Providers and clinicians learn culturally-tailored approaches to » Train health professionals regarding issues improve overall patient care and effectively support affecting cognitive health among African caregivers impacted by Alzheimer’s dementia. From

Americans via partnerships with the National Black 2016-2018, partnerships with NBNA and NMA and

Nurses Association (NBNA) and National Medical their chapters trained over 500 clinicians in 17 regions

Association (NMA); and across the United States. A component of The Balm » Engage faith institutions in public health In Gilead’s annual Healthy Churches 2020 National initiatives using its Faith-Based Community Conference is the training and dissemination of Mobilization Model. resources that increase awareness of cognitive health Public awareness of and education on Alzheimer’s among African Americans. In addition to its national and other dementias is a major component of The conference, the organization conducted five regional Balm In Gilead’s cooperative agreement. The nonprofit forums on healthy aging, which includes brain health, targeting persons 50 and older. • SPOTLIGHT

MODIFIABLE RISK FACTORS FOR COGNITIVE DECLINE AND DEMENTIA

Researchers do not yet fully understand what causes » National Academies of Science, Engineering and Alzheimer’s disease, but it may be a combination of Medicine, 2017: Preventing Cognitive Decline genetic, environmental, and lifestyle factors that and Dementia: A Way Forward. The report affect the brain over a long period of time. While some discusses cognitive training; blood pressure of these factors cannot be altered (such as advancing management in people with hypertension; and age and family history), others may be modifiable to increased physical activity. reduce risk of cognitive decline and dementia. » The Lancet Commission on Dementia Several scientific panels have examined the increasing Prevention, Intervention and Care (in The body of evidence regarding modifiable risk factors Lancet, 390(10113):2673-2734), 2017: Dementia related to cognitive decline and dementia. They Prevention, Intervention and Care. The report have examined this topic from varying perspectives discusses active treatment of hypertension and have utilized different review methodologies in mid-life; childhood education; exercise; and standards, which account for variations in the maintaining social engagement; reducing smoking; conclusions reached by these groups. The most recent and management of hearing loss, depression, expert reports include the following. diabetes, and obesity. • » Institute of Medicine, 2015: Cognitive Aging: Progress in Understanding and Opportunities for Action. The report discusses physical activity; cardiovascular risk factor (high blood pressure, diabetes, and smoking) reduction and management; and discussions with healthcare providers about health conditions and medications. » Alzheimer’s Association (in Alzheimer’s & Dementia,11(6):718-726), 2015: Summary of the Evidence on Modifiable Risk Factors for Cognitive Decline and Dementia: A Population- Based Perspective. The report discusses regular physical activity; management of cardiovascular risk factors (diabetes, obesity, smoking, and hypertension); healthy diet; and lifelong learning/ cognitive training. M = MONITOR & EVALUATE

Outcome: Surveillance is a fundamental and essential public ENHANCED NATIONWIDE AND health tool for understanding the prevalence of STATE DATA disease, health risk factors, preventive health behaviors, and burden of diseases and conditions. M-1 Implement the Behavioral Risk Factor Data gathered can inform strategies to reduce disease Surveillance System (BRFSS) optional risk and apply effective interventions to lessen the module for Cognitive Decline in 2019 burden of disease. The BRFSS is an established or 2020, and the BRFSS optional module for data collection tool used in every state, the District of Caregiving in 2021 or 2022. Columbia, and the U.S. Territories.

M-2 Support national data collection on dementia The BRFSS Cognitive Decline Module asks about and caregiving. subjective cognitive decline, the potential difficulties it may cause with everyday activities, and whether people have discussed their memory challenges with a healthcare professional. The companion Caregiver Module includes questions about caregiving status and the caregiving situation, care recipient’s health issues, and prospects for future caregiving needs.

These two BRFSS modules offer states an efficient mechanism for collecting data that affords comparisons with other states. Past use of the data indicate they can be instrumental in communicating the impact of cognitive problems and caregiving to state leaders, and facilitate understanding of their relationship with other chronic health conditions and health behaviors.

36 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map cdc.gov/aging/agingdata/index.html state levels. health amongolderadults at thenationaland screenings andvaccinations, andmental other keyindicatorsofhealthandwell-being, from theBRFSSmodulesaswellmany data oncognitivehealthandcaregiving CDC’ Healthy caregiver health. impacts of Alzheimer from eachotherandcompareburden in nationaldatacollectionefforts helpsstatestolearn communicate impact,andmonitortrends.Participation reported, isusefultosetpriorities,informpolicies, Reporting Systemmeasures.Suchdata,when Incentive PaymentSystemandPhysicianQuality quality ofservicesandusethroughMerit-based BRFSS. Oneopportunity, forexample,istoassess in additionalnationaldatacollectionefforts beyond State publichealthagenciescanalsoparticipate s Healthy Aging DataPortal Aging DataPortalcontains • ’s andother dementiasand cognitive impairment. so primarilybecauseofdementia orother problem ordisability assistance toalovedonewithhealth 50,000 reportedprovidingregularcareor 18 andolder sample ofalmost233,000respondentsaged the BRFSSCaregiverModule,generatinga Columbia, andPuertoRicoimplemented In 2015–2016,38states,theDistrictof programs relatedto Road Map and planning forservices andimplementing officials and policymakers withprojections is importantin ordertoassiststatehealth subjective cognitivedecline andcaregiving Ongoing collectionofstate-level dataon » » » » analysis oftheseresultsindicates: respondents aged45andolder nationwide sampleofmorethan227,000 Cognitive DeclineModule,generatinga Columbia, andPuertoRicousedtheBRFSS In 2015–2016,49states,theDistrictof

adults wholivealonereportedSCD. More thanoneineight(13.8%)ofall any chronicdiseasereportedSCD; 15.2% ofadultsaged45andolderwith because oftheirSCD; reported havingfunctionallimitations Among peoplewithSCD,50.6% (SCD); report subjectivecognitivedecline 1 1.2% ofU.S.adultsaged45andolder COMPELLING DA . Ofthoserespondents,nearly , andnearly5,000did 53

Actions. . CDC T

A 46

37 III. The Action Agenda Outcome: Data specific to state and local areas can be IMPROVED DECISION MAKING USING invaluable in shaping priorities, policies, and programs STATE AND LOCAL DATA tailored to the unique needs in those areas. Past and current data systems have produced a wealth of M-3 Use data gleaned through available information—much of which has yet to be mined for surveillance strategies and other sources public health purposes—to address Alzheimer’s and to inform the public health program and other dementias. A few examples are: death certificate policy response to cognitive health, data (particularly before the age of 80), Public Health impairment, and caregiving. Accreditation Board data, livability index data, claims data from all-payer claims databases, data from M-4 Embed evaluation into training and aging networks, health department accreditation caregiving support programs to determine findings, and hospital and community health needs program accessibility, effectiveness, assessments. Examining these data in new ways with and impact. pertinent public health questions in mind—using, for M-5 Estimate the gap between workforce example, social network analyses, policy scans, and capacity and anticipated demand for economic models—can be revealing and beneficial services to support people with dementia in informing actions that can be taken by state health and their caregivers. leadership, legislators, health plans, and more. (A summary of potential data sources and methods can be found in the Alzheimer’s Association Needs Assessment Toolkit, alz.org/publichealth).

Effective public health practice relies on evaluation of training and programmatic activities to determine what difference they made—and for whom. Incorporating In New York, annual evaluations evaluation into newly developed and existing efforts help shape and refine an extensive across the care spectrum could be planned during statewide dementia support initiative. Learn more on page 52. early design phases in order to adequately assess quality, reach, and effectiveness. This applies at all levels of care: healthcare delivery, public health, first

38 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map step todevelopingeffective solutions. Understanding gapsinworkforcereadinessisthefirst population isparamountifthenationtobeprepared. quantities ofprofessionalstosupportthisgrowing of theircommunities.Estimatingthetypesand providers tohelpthemremainpartofthefabric providers, occupationaltherapists,andtransportation community-based andlong-termcareservice workers, adultdayhealthcareprofessionals, care. They willneedexpandingnumbersof social eventually neednursinghomesorotherresidential will liveinhomeandcommunitysettings;others and theircaregiverscannotbeignored. The majority Lastly, theprojected increaseinpeoplewithdementia informed interventionsforwidespreaddistribution. support programsisnecessarytoidentifyevidence- services, etc.Evaluationofcurrenttrainingand hospitals, caregivers,home-andcommunity-based responders, lawenforcement,communityprograms, • » » » » years. dementia willnearlytripleinthenext35 number ofpeoplewith Current projectionsindicatethatthe community of formalsupportservicesinthe with dementiahavelowornoknowledge More thanhalfofcaregiversforpeople saved forlong-termcareexpenses. Many populations inneed. available oreasilyaccessible tothe disconnected andmaynotbewidely and theircaregivers,theyareoften supports existforpeoplewithdementia While manyinterventions,services,and COMPELLING DA Americans havenotplanned or 1 . 54 Alzheimer T A ’ s 55 39 III. The Action Agenda THE HEALTHY BRAIN INITIATIVE: IV DEVELOPING THE THIRD ROAD MAP

In 2005, the Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC) created the Healthy Brain Initiative—a collaborative effort to advance public health awareness of and action on Alzheimer’s disease as a public health issue. Healthy Brain Initiative partners work together to better understand the public health burden of cognitive impairment through surveillance; build a strong evidence base for policies, communication, and programmatic interventions for promoting cognitive health and addressing cognitive impairment and caregiving; and translate that foundation into effective public health practice in states and communities.

The first major document to advance these goals was The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health (2007), which served as a catalyst for numerous accomplishments on the part of multiple stakeholders. Similarly, the second Road Map, The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018, is noted for stimulating the growing public health response to dementia. Since publication of the first Road Map, implementation of specific Road Map actions has increased year over year.

40 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map the fullarrayofactionsbytopicarea). draft versionsofthisRoadMap(see Appendix Cfor stakeholders, andsubjectmatterexpertsallreviewed of thisRoadMap.LeadershipCommitteemembers, emerged wastheactionagendafoundinSectionIII and amendedbytheLeadershipCommittee.What 2023. Proposedactionswerecompiled,discussed, and theirpartnerstoimplementbetween2018 of proposedactionsforstateandlocalpublichealth determine anappropriate,attainable,andfeasibleset experts, practitioners,anddecisionmakers—to state, andcommunitylevels—includingcontent engaged awiderrangeofstakeholdersatnational, of thedisease.Eachworkgroup(see Appendix B) and training,caregivers,evidenceonimpact identification andriskreduction,diagnosis,education and formedthebasisforsmallworkgroupsonrisk coming years.Fiveoverarchingissuesemerged and issuesthatwouldrequirecontinuedeffort inthe previous RoadMapthathadnotbeenaccomplished years. The Committeeidentifiedactionsfrom the identify leadingpublichealthissuesforthenextfive six-month periodtoexamineprogressto-dateand Leadership Committee(see Appendix A) metovera In updatingandproducingthisthirditeration,a evidence andadoptnewly-identifiedbestpractices. development, shouldtakeintoconsiderationthelatest Implementation ofthisRoadMap,justlikeits to emerge,oftenwithimplicationsforpublichealth. evolving. Newevidenceanddevelopmentscontinue health and andotherdementiasis Alzheimer’s members acknowledgedthatthescienceoncognitive documented atthetimeofpublication.Committee dynamic guidebasedonbestpracticesandevidence The LeadershipCommitteeviewsthisRoadMapasa health practice. cognitive agingasacentralpartofpublic spread understandingofandsupportfor The HealthyBrainInitiativeisdesignedto The HealthyBrainInitiative

• 41 IV:: Developing the Third Road Map SPOTLIGHT

Rapid Development of Science: FINGER to U.S. POINTER

Findings from the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability study (the FINGER study), which were released in 2015, indicated that it is possible to delay cognitive decline by using a multi-component lifestyle intervention among older at-risk individuals.* Building on these findings, theAlzheimer ’s Association is funding U.S. POINTER, a two-year clinical trial to evaluate whether lifestyle interventions that simultaneously target many risk factors protect cognitive function in older adults who are at increased risk for cognitive decline. U.S. POINTER is part of a larger, international effort known as World Wide FINGERS and includes research in Europe, Australia, Singapore, and China to similarly test multi-component lifestyle interventions.

The U.S. POINTER is the first study to examine this combined multi-dimensional intervention in a large- scale U.S.-based population. Alzheimer’s Association offices nationwide will participate in intervention delivery to set the stage for an accessible and sustainable community-based model for prevention. More detail can be found at: alz.org/us-pointer/. • * Ngandu T, Lehtisalo J, Solomon A, Levälahti E, Ahtiluoto S, Antikainen R, et al. A 2-year multidomain intervention of diet, exercise, cognitive training, and vascular risk monitoring versus control to prevent cognitive decline in at-risk elderly people (FINGER): A randomised controlled trial. Lancet 2015;385 (9984):2255-63.

42 V CASE STUDIES and otherdementiasintheirowncommunities. health istakingactioninresponseto Alzheimer’s highlight real-worldexamplesofhowpublic Initiative RoadMap. These shortsummaries implementing actionsfromtheHealthyBrain responded tothegrowingdementiacrisisby from stateandlocalpublichealthagencieswho Public healthpractitionerscanlearnbyexample Map areavailableat public healthcommunityimplementtheRoad Many otherexamplesandresourcestohelpthe Implementation Additional GuidanceonPublicHealth alz.org/publichealth . • 43 V. Case Studies SOUTH CAROLINA

Promoting Brain Health

To raise awareness about brain health, the South the messaging, reaching over 31,000 people and Carolina Department of Health and Environmental 6,500 social media users through these channels. Control (SC-DHEC) partnered with the Alzheimer’s South Carolinians were encouraged to visit the SC- Association South Carolina Chapter, the American DHEC brain health webpage and smokers to call the Heart Association, and Eat Smart Move More South agency’s tobacco quitline. Carolina on a multi-layered campaign: Take Brain As part of the campaign, SC-DHEC offered a monthly Health to Heart. The multi-component initiative was drawing for a fitness tracker device. To enter the purposefully designed to reach rural and racial/ethnic drawing—advertised on the SC-DHEC website— minority populations that have a higher prevalence people pledged to engage in seven behaviors that of cardiovascular risk factors that also related to promote brain health, such as exercising and using increased risk of cognitive decline and possibly a seat belt. As another part of this campaign, SC- dementia. DHEC developed various educational materials: a Campaign elements included a new website (see floor display, brochure, factsheet, and social media image), health education materials, social media resources. Messages focusing on risk factors for messages, three radio PSAs, and an online pledge cognitive decline were synced with existing messages in which people commit to keeping their body, heart, regarding exercise, smoking cessation, hypertension, and brain healthy. The messaging was designed diabetes, obesity, and traumatic brain injury. to mobilize South Carolinians to protect their brain • health by being more active, eating better, and taking other steps. Benedict College, a historically African American institution, and the University of South Carolina Prevention Research Center helped promote the campaign.

Over the course of a seven-week health-campaign period, the DHEC-led collaboration had nearly 1,500 PSAs aired on four radio stations, reaching over 2.7 million people from diverse demographic backgrounds. Print educational materials and social media reinforced

44 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map Brain Research Network(UW-HBRN) partneredto (NAPCA) and theUniversityofWashington Healthy Additionally, theNational Asian PacificCenteron Aging (see image). hand fansprintedwithculturally-tailored messages venue toreachwomenand recommendedcreating identified African Americanchurches asapromising messages to African American audiences.CMCH (CMCH) tohelptailoranddisseminatebrainhealth based, nonprofitCenterforMultiCulturalHealth state healthofficer, DOHpartneredwiththeSeattle- Initiative. After securingapprovalfromWashington’s by the Alzheimer’s Association fortheHealthyBrain evidence-based, brainhealthmessagesdeveloped on nationalprevalencedata.DOHthenreviewed audience forcognitivehealtheducationbased DOH prioritized African American womenasamain possibly dementia. the publicaboutreducingriskforcognitivedeclineand regarding culturally-appropriatestrategiestoeducate Address DiseaseandOtherDementias Alzheimer’s implementation ofthe and PacificIslanders(AAPIs). Theseefforts support among AsianAmericans assessments cognitive brain healthamong African Americans andencourage began atwo-partinitiativetoincreaseawarenessof plan, theWashington DepartmentofHealth(DOH) charged withimplementingthestate’s Alzheimer’s Collaborative, avoluntarystatewideworkgroup As apartnerinWashington State’s Dementia Action Educating WASHINGTON African Washington StatePlanto Americans, Asian Americans andPacificIslandersaboutDementia

AAPI actionbriefs. grant foritsworkonthe Seattle InnovationFund HBRN receiveda2017 disseminate them.UW briefs andalsohelpedto guidance ontheaction Collaborative provided Dementia Action The assessment resources. older AAPIs’ andtheircaregivers’ accesstocognitive these professionalsplayacrucialroleinfacilitating emphasized intheguideforserviceproviders,as of earlydetectioncognitiveimpairmentis information ontreatmentoptions. The importance Policymakers with AAPIs aboutDementia: An Action Guidefor Guide forServiceProviders Dementia: AnAction about with AAPIs Connecting and UW-HBRN releasedtwobriefsontheirfindings: an appointmentwithahealthcareprovider. NAPCA of anolderrelativetoaccompanythat urban adultsconcernedaboutthecognitivehealth encourage non-Hispanicwhiteor African American by theUniversityofPennsylvaniaHBRNCenterto assessed theacceptabilityofmessagesdeveloped one livingrelativeage65orover. The focusgroups local ChineseandJapaneseadultswithatleast Through sixfocusgroups,theysolicitedinputfrom conduct outreachandeducationforSeattle AAPIs. . Eachoffers dementiaresourcesand • - andConnecting

45 V. Case Studies PUERTO RICO

Using Social Media to Promote Engagement

The Puerto Rico Department of Health worked with the Pre/post surveys in four sessions with a total of 212 Prevention Research Center’s South Carolina Healthy participants showed improved knowledge and high Brain Research Network at the University of South satisfaction ratings. All participants said they learned Carolina to implement the Puerto Rico Alzheimer’s something new from the program, and 80% said most Action Plan, with a special focus on education and of the information presented was new to them. A total empowerment of individuals and families. One of 250 messages were posted on the Un café por el component was a collaborative educational initiative Alzheimer community Facebook page over a seven- called Un café por el Alzheimer.56 With special month period. An average increase of nearly 65% in attention toward decreasing stigma, this initiative used the number of people reached by the Facebook page social media and in-person gatherings to support offered evidence of the program’s success in helping informal but structured conversations with experts participants remain actively engaged while fostering about Alzheimer’s disease, risk factors, diagnosis, social support and reducing stigmas and myths pharmacological and non-pharmacological treatments, surrounding the disease.57 management of behavioral changes, and healthy • living. The Alzheimer’s cafés enabled participants to have informal conversations in coffee shops across the island. The social media efforts built off of these in-person conversations to reinforce key messages as a way of engaging and educating the wider audience. Participants could raise questions at any time and were encouraged to share testimonials and comments. At the end of the gatherings, the participants were invited to continue the conversation online by following the Facebook page.

46 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map coalitions hosted sevenadvance-planning educational seminars. Inaddition,three localhealthimprovement through healthfairs,faith-based events,andend-of-life Marylanders learnedabout advancecareplanning on electronicadvancedirectives. Morethan500 year-long seriesofcommunityengagementactivities with theMarylandFaithHealthNetworktoleada To increaseadvancecareplanning,MDHcollaborated Bono ResourceCenters. Aid andMarylandVolunteer LawyersService Pro planning servicesavailablethroughMarylandLegal hospitals andhospiceproviders,withlimitedfreecare- care planninginMarylandisoffered primarilythrough Program. An earlyassessmentfoundthatadvance increase publicawarenessofthe Advance Directive health informationexchange,andconductoutreachto providers atpoint-of-careusingthestate-designated an electronicplatformtoconnectwithhealthcare the useofelectronicadvancedirectives,develop Maryland DepartmentofHealth(MDH)toencourage dementia. Among othermandates,thelawdirects advance careplanningamongfamiliesimpactedby Bill 1385inMay2016allowedthestatetoincrease future careneeds. The passageofMarylandHouse so toodoestheneedtoassistfamiliesinplanningfor years. As thenumberofpeoplewithdementiarises, in 2018to130,0002025,an18%increaseeight dementia isprojectedtorise—from110,000 people Maryland’s populationofpeoplewith Alzheimer’s Encouraging Advance CarePlanningforPeoplewithDementia MAR YLAND programming. interventions inMaryland’s publichealth potential cognitivehealtheducationandestablish this uniqueopportunitytoengagepartnersdiscuss As atenetoftheMarylandStatePlan,MDHused on DiseaseandRelatedDisorders. Alzheimer’s monitors implementationofthe Disorders Councilduringthistime. The Council Virginia I.Jones DiseaseandRelated Alzheimer’s Department of Aging) of the governor-appointed chair (alongwitharepresentativefromtheMaryland Disease PreventionandControlservedasaco- The medicaldirectoroftheMDHCenterforChronic impairment inadvanceplanning. the importanceofinvolvingpeoplewithcognitive compared withpre-session)reportedunderstanding Also, agreaternumberofparticipants(post-session documents post-session(25%)aspre-session(10%). identify corelegalandfinancialadvanceplanning More thantwiceasmanyparticipantswereableto sessions, withacombinedtotalof144participants. • Maryland StatePlan

47 V. Case Studies COLORADO

Preparing First Responders for Interactions with People with Dementia

Emergency Medical Service (EMS) providers receive TIPS FOR EMS WORKING WITH many calls to assist people with Alzheimer’s and other PEOPLE WITH ALZHEIMER’S

dementias. However, they have little or no formal THERE ARE 67,000 PEOPLE AGE 65 AND OLDER WITH ALZHEIMER’S DISEASE IN COLORADO training to prepare them for the unique physical, THAT NUMBER IS EXPECTED TO GROW TO 76,000 BY 2020

behavioral, and communication challenges related to ALZHEIMER’S DISEASE AND OTHER RELATED DEMENTIAS dementia. are progressive impairments of cognitive function that a‹ ects a person’s thinking, emotions and behavior Signs include: memory impairment, aphasia (language disturbance), apraxia (impaired motor function), agnosia To develop a dementia-competent workforce (failure to recognize otherwise-familiar objects) and disturbance in executive function (failure to throughout Colorado, the Colorado Department plan, organize and think abstractly) These are not mental illnesses of Public Health and the Environment (CDPHE) WHEN ENCOUNTERING A PERSON WITH ALZHEIMER’S partnered with the Alzheimer’s Association Colorado COMMUNICATE

Chapter to deliver its Approaching Alzheimer’s: First Use the TALK tactics: Responder Training Program. CDPHE marketed the Take it slow availability of the free, in-person training through its Ask simple questions Limit reality checks internal networks and all 11 of Colorado’s Regional Keep eye contact Emergency and Trauma Advisory Councils. DO DON’T The training helps first responders serve people • Approach slowly and from the front • Take comments personally • Introduce yourself and explain you are • Approach from behind without warning there to help • Argue or correct the person with Alzheimer’s in situations involving wandering, • Remain calm, smile and use a friendly • Touch without asking/ explaining voice • Forget about co-morbidities disasters or other emergency situations, abuse or • Speak slowly and allow time for response (15-30 seconds) • Change the subject to something neglect, “shoplifting” because they forgot to pay, and pleasant if the person becomes agitated driving. At the completion of training, participants 24/7 HELPLINE 8 .272.39 receive a poster—Tips for EMS Working with People ALZ.ORG/CO with Alzheimer’s—to display and reinforce effective responses. •

48 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map long-term carefacilities(especiallyinruralareas), Because NewMexicohasashortageofnursesand Supporting Caregivers NEW MEXICO advance directives,andmaintaining ahealthylifestyle. solving andadheringtotreatment plans,making issues, participatingintreatmentdecisions,problem- Topics includemanagingcommonchronicdisease persons withchronicconditionsandtheircaregivers. developed byStanfordUniversitytohelpeducate management isanevidence-basedintervention Another setofcoursesforchronicdiseaseself- themselves. andotherdementiascarefor Alzheimer’s the challengesofcaringforafamilymemberwith loss ordementia.Graduateslearnhowtohandle program forcaregiversofpeoplewithmemory Savvy Caregiver participate intwoimportantcourses. Services Departmenttoencouragecaregivers partnered withthestate’s Aging andLong-Term with dementia,theNewMexicoDepartmentofHealth To improvesupportforcaregiversofpeopleliving depends upontheavailabilityofin-homecaregivers. as possible—asituationthatistypicallypreferredbut people livingwithdementiastayintheirhomesaslong state healthofficialsrealizetheimportanceofhelping isafree,14-houreducational 58

average ofabout75permonth. period, thewebsitehad1,384pageviewsoran Department ofHealthwebsite.Overan18-month on cognitivedeclineanddementiatheNewMexico by dementia,thehealthdepartmentpostedinformation age. disease thanmarriednon-caregiversofthesame a strokeand50%morelikelytohavecardiovascular spouse withdementiaaretwiceaslikelytohavehad disease, ordiabetes. Also, oldercaregiversfora chronic conditions,includinghypertension,heart are morelikelythantheirpeerstohavemultiple programs becauseolderadultslivingwithdementia The healthdepartmentchosetoco-marketthe 59

As anadditionalwaytosupportpeopleaffected • 49 V. Case Studies UTAH

Improving Early Detection during Medicare Annual Wellness Visits

Utah is one of the most rural and fastest growing knowledge of validated cognitive assessment tools. states in America. Currently, about 11% of the state’s As a step in this process, UDOH sent the study report three million residents is aged 65 or older, and the to all Utah primary care physicians, along with a list of state has about 30,000 people with Alzheimer’s resources for people with cognitive impairment and a dementia, which is expected to rise 40% to 42,000 recommendation from UDOH’s executive director for by 2025. Diagnoses of dementia in later stages may routine cognitive assessment during the AWV using lead to higher levels of disability while receiving care, the Mini-Cog as the primary assessment tool, followed delays in accessing timely primary care, lack of care by the Montreal Cognitive Assessment tool (MoCA). coordination, and duplication of services. The project deepened UDOH’s understanding of To improve early detection of cognitive impairment, a some challenges that physicians face in assessing focus of Utah’s State Plan for Alzheimer’s and Related cognition during the AWV, one of which is uncertainty Dementias, the Utah Department of Health (UDOH) about which validated tool to use. Receiving clear contracted with HealthInsight, a quality improvement recommendations from UDOH’s executive director organization. HealthInsight interviewed providers may begin increasing physician use of the tools during about their experiences and processes conducting AWVs or other occasions in which a physician has cognitive assessments during the Medicare Annual concerns about potential cognitive impairment. Use of Wellness Visit (AWV). While some providers reported validated early detection tools helps physicians assess performing routine cognitive assessments during the cognitive functioning and detect potential concerns AWV, others reported screening only under certain early, the first step in increasing early diagnoses. conditions, such as patient requests, patient has With some legislative support, UDOH plans to specific risk factors for cognitive decline, etc. Providers continue collaborating with HealthInsight to develop: also expressed a need for better tools to detect early- stage memory loss. The resulting report, Cognitive » Cognitive assessment training for primary Assessments during Medicare Annual Wellness care physicians and their office staff that will Visits, was a collaborative product from HealthInsight; include use of recommended tools and workflow UDOH; the Center for Alzheimer’s Care, Imaging and improvement techniques to instill a reliable, Research at the University of Utah; and Intermountain repeatable process in clinics. Medical Center. » Cognitive health and wellness toolkit to help health Actions in the Healthy Brain Initiative Road Map professionals navigate the cognitive assessment include improving healthcare providers’ ability to process, including assessment, diagnosis, recognize the early warning signs of dementia and referrals, and community resources. • 50 behaves aggressively,behaves and care caregivers andhelping a routine,respondingifthe personwithdementia and usingnon-verbalcues, givingthecarerecipient behaviors. Specifically, theygainskillsin recognizing activities ofdailyliving,and mitigatingchallenging communication, waystopromoteindependencein training, participantslearnstrategiesforeffective a state,includingruralareas.Overthefive-session Dialogues Health, UniversityofSouthCarolina, Developed andtestedbythe Arnold SchoolofPublic caregivers, andfamilymembersaboutdementia. to educateprofessionalsworkinginthecommunity, Dementia Dialogues unnecessary hospitalizations. and keepchronicconditionsinchecktominimize to reduceinjuries,avoidmedicationproblems, know howtousebehavioralcuesandotherstrategies in ruralareaswithlimitedhealthcareaccess)maynot both professionalsandunpaidcaregivers(especially for theuniquechallengesofdementia. As aresult, not receivedadequatetrainingonhowtoadjustcare home, community, andlong-termcaresettingshave problems communicating.Manyprofessionalsin are unhealthyornotsafe;also,theyoftenhave persons mayhavetroublerecognizingwhenthey For example,asdementiaprogresses,affected care needsthatareoftenchallenginganddemanding. People with andotherdementiashave Alzheimer’s Training Professionalsthrough UT AH canbecost-effectively deliveredthroughout is anevidence-informedtraining Dementia Dementia Dialogues care tohelpoptimizefunctioning. associated withcommunicationproblems,andprovide management, reduceagitationanddifficultbehavior and caregiverscanbetteradaptchronicdisease embedded in By applyingtheknowledgeandbestpractices local courses. news radiostationassistedwithprobonomarketing of funeral homes. Area agenciesonagingandalocal Hospice, SunriseSeniorLiving,UniversityofUtah,and Theta Tau International,SolsticeHomeHealth& sponsorships fromGammaRhoChapterofSigma and 7.5continuingeducationhours.UDOHsecured the trainingearnadementiaspecialistcertificate free trainingintheircommunities. Those completing of certifiedindividualswhothenareabletodeliver The UniversityofSouthCarolinapreparesacadre (UDOH) initiated Convinced ofitsvalue,theUtahDepartmentHealth more dementia-capableworkforce. professionals andcaregivershelpsthestatedevelopa recipients devisecareplans. This typeoftrainingfor Dementia Dialogues Dementia Dialogues • , bothprofessionals

trainingin2017. 51 V. Case Studies NEW YORK

Using Data to Expand Caregiver Services

Since the 1980s, the New York State Department » Ten regional contractors, covering every county of Health (NYSDOH) has supported people with in the state, are funded at $1.5 million per year to Alzheimer’s and other dementias and their caregivers. deliver a wide range of supportive services that NYSDOH developed strong partnerships with many promote the mental and physical well-being of organizations, including the Alzheimer’s Association, caregivers. Services include support groups, care healthcare organizations, and researchers across consultation, family consultation, respite care, and New York State. These partnerships—bolstered by education and wellness programs for caregivers. solid data documenting the impact of evidenced- » A statewide contractor coordinates caregiver based support models and state surveillance data support, community education and partnerships on caregiving and cognitive impairment—enabled an with related organizations with $5 million per year. unprecedented expansion of caregiver and clinical supports throughout the state. The first year of ADCSI enabled organizational capacity-building, including scaling up infrastructure, To help keep people living with dementia in the training, and hiring staff. Medical and service community longer and reduce caregiver stress, providers reported a growing awareness and NYSDOH proposed an initiative to expand dementia- demand for services as they expanded outreach related services statewide. With bipartisan legislative activities. Almost all providers reported forming new approval, the resulting NYSDOH Alzheimer’s Disease partnerships, suggesting enhanced coordination Caregiver Support Initiative (ADSCI) is grounded in between organizations and a strengthened network of an effective model program developed by New York providers. In the first year, community support services University (NYU) and others. Funded at $25 million for people with dementia and their caregivers reached annually, ADSCI promotes early diagnosis and has approximately 13,000 individuals and families; once protocol for providing education, care consultation, and the infrastructure reaches maturity, it will serve many a plan for medical and social services to persons living more New Yorkers. The program evaluation for year with Alzheimer’s and the caregiver, thereby helping 1 revealed barriers to expansion including home facilitate clinical-community linkages. Components health aide workforce shortages and a lack of respite include: providers, particularly in rural areas. In addition, over » Ten teaching hospitals across the state are one third of providers experienced challenges hiring funded at $500,000 each year for five years for and retaining community support staff with experience early detection, education of professionals, and in dementia. consultation for primary care providers when they • need help with clinical decisions. 52 VI

CONCLUSION the Alzheimer’s crisis. the Alzheimer’s partnerships toimplementactionsinaddressing resource toassistwithleveragingsustained and everycommunity. This RoadMapisa systems andenhanceservicedeliveryineach and bystatelocalagenciestoimprove Progress willrequirecollaborationacrosssectors of caregivers. community, andhelpmeettheneeds cognitive impairmentforpeoplelivinginthe ability topromotecognitivehealth,address Americans dependonthenation’s collective independence, andqualityoflifeformillions consuming ourhealthcaresystem.Productivity, cognitive healthandotherissuesofagingfrom and publicprivatepartnerscouldprevent strategic collaborationbetweenpublichealth dementias continuestorise. A quickand of peopleaffected by andother Alzheimer’s The needforurgencyisclearasthenumber •

53 VI. Conclusion 54 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map Health Clinical Professor, UAlbany School of Public New York StateDepartmentofHealth Bureau Director DAVID HOFFMAN,DPS,CCE National Alliance forCaregiving Executive Advisor RICK GREENE,MSW New MexicoDepartmentofHealth Cabinet Secretary K. LYNN GALLAGHER, JD (Service throughJune7,2017) Georgia DepartmentofPublicHealth Commissioner andStateHealthOfficer BRENDA FITZGERALD,MD Services Washington DepartmentofSocial&Health Administration Aging andLong-Term Support Office Chief,StateUniton Aging SUSAN ENGELS,CPM National Association ofCounties(NACo) Associate LegislativeDirector, Health BRIAN BOWDEN,MA,MSC,MPS Tufts HealthPlan President ofSeniorProducts PATTY BLAKE COMMITTEE MEMBERS Alzheimer’s Association Chief PublicPolicyOfficer ROBERT EGGE CO-CHAIRS

FEDERAL LIAISONS&STAFF APPENDIX A: LEADERSHIP COMMITTEE,

Department ofHealth andHumanServices Secretary forHealth Former PrincipalDeputy Assistant JEWEL MULLEN,MD,MPH,MPA CDC Foundation President andCEO JUDITH MONROE,MD Officials Association ofStateand Territorial Health and Transformation Senior Advisor, PublicHealthLeadership SHARON MOFFATT, RN,BSN,MS University ofIllinoisatChicago Nutrition Associate Professor, Kinesiologyand Network Representative, HealthyBrainResearch DAVID MARQUEZ,PHD AARP International Affairs Senior Vice PresidentPolicy, Researchand SARAH LENZLOCK,JD LEAD Coalition Executive Director IAN KREMER,JD University ofIowa Associate Professor BRIAN KASKIE,PHD,MA Centers forDiseaseControlandPrevention Lead, DiseaseandHealthy Alzheimer’s Aging Program LISA MCGUIRE,PHD

Officials Association ofState and Territorial Health Director, HealthImprovement KRISTEN REGO,MS The BalmInGilead Deputy Director PAMELA PRICE Health Promotion Utah DepartmentofHealth,Bureau StatePlanSpecialist Alzheimer’s LYNN MEINOR AARP PublicPolicyInstitute Senior StrategicPolicy Advisor LYNN FRISSFEINBURG, MSW ALTERNATES Palliative Care,IndianHealthService Chief ClinicalConsultant,Geriatricsand Geriatrician, CherokeeIndianHospital Certified MedicalDirector, Tsali CareCenter BLYTHE WINCHESTER,MD,MPH,CMD Aging National Association of Area Agencies on Chief, ProgramsandServices NORA SUPER,MPA The BalmInGilead Founder andCEO PERNESSA SEELE

55 Appendix A: Leadership Committee, Federal Liaisons & Staff FEDERAL LIAISONS HEIDI HOLT, MPA Public Health Advisor ELLEN BLACKWELL, MSW Alzheimer’s Disease and Healthy Aging Senior Advisor, Center for Clinical Program Standards and Quality Centers for Disease Control and Prevention Centers for Medicare & Medicaid Services ADAM LUSTIG, MS MELINDA KELLEY, PHD FACILITATOR Director, Office of Legislation, Policy, and Senior Manager for Health System International Activities Transformation National Institute on Aging National Network of Public Health Institutes

JANE TILLY, DRPH MEGAN MAHEDY Senior Policy Advisor, Aging Center for Associate, Splaine Consulting Policy and Evaluation Administration for Community Living TARA REDD, MED, MCHES Director, Program Development JOAN WEISS, PHD, RN, CRNP, FAAN Emory Centers for Training and Technical Senior Advisor, Division of Medicine and Assistance Dentistry Health Resources and Services BECCA RUBIN Administration Graphic Designer Gold Standard Studio STAFF AND CONSULTANTS JOHN SHEAN, MPH SUSAN BAKER, MPH Associate Director, Public Health Consultant Alzheimer’s Association Alzheimer’s Association MICHAEL SPLAINE, MPA DAVID BALDRIDGE Founder and Principal Executive Director Splaine Consulting International Association for Indigenous Aging JESSICA WEHLE, MPH Facilitator BILL BENSON Senior Manager for Performance Board President Improvement Initiatives International Association for Indigenous National Network of Public Health Institutes Aging

MOLLY FRENCH, MS Director of Public Health Alzheimer’s Association

LISA GARBARINO Public Health Analyst Alzheimer’s Disease and Healthy Aging Program Centers for Disease Control and Prevention

56 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map University ofIllinoisatChicago and Nutrition Network Associate Professor, Kinesiology Representative, HealthyBrainResearch David Marquez,PhD Health Clinical Professor, UAlbany SchoolofPublic of Health Bureau Director, New York StateDepartment David Hoffman,DPS,CCE(Chair) RISK REDUCTIONWORKGROUP University ofIowa Program Director, MPHinPolicy Associate Professor Brian Kaskie,PhD,MA (Co-Chair) National Association ofCounties(NACo) Associate LegislativeDirector, Health Brian Bowden,MA,MSc,MPS(Co-Chair) EDUCATION AND TRAININGWORKGROUP Services Washington DepartmentofSocial&Health Aging andLong-Term Support Administration Office Chief,StateUniton Aging Susan Engels,CPM National Alliance forCaregiving Executive Advisor Rick Greene,MSW(Chair) DEMENTIA CAREGIVINGWORKGROUP

CONTRIBUTORS &REVIEWERS APPENDIX B:WORKGROUPS,

Palliative Care,IndianHealthService Chief ClinicalConsultant,Geriatrics and Geriatrician, CherokeeIndianHospital Certified MedicalDirector Blythe Winchester, MD,MPH,CMD Department ofHealthandHumanServices for Health Former PrincipalDeputy Assistant Secretary Jewel Mullen,MD,MPH,MPA Assistance Emory Centersfor Training and Director, ProgramDevelopment Tara Redd,MEd,MCHES St. LouisUniversity of Medicine Director, GeriatricEducationCenter,School Professor, SchoolofSocialWork Marla Berg-Weger,MSW,PHD AARP’s PublicPolicyInstitute Senior StrategicPolicy Advisor Lynn FrissFeinberg Department ofHealthandHumanServices for Health Former PrincipalDeputy Assistant Secretary Jewel Mullen,MD,MPH,MPA

, T sali CareCenter

Technical

Executive

Splaine Consulting Founder andPrincipal Michael Splaine(Staff) Splaine Consulting Founder andPrincipal Michael Splaine(Staff) Centers forDiseaseControlandPrevention Aging Program Lead, DiseaseandHealthy Alzheimer’s Lisa McGuire,PhD(Staff) Aging on of AreaAgencies Association National Chief, ProgramsandServices Nora Super, MPA

57 Appendix B: Workgroups, Contributors & Reviewers EVIDENCE OF IMPACT WORKGROUP

Sharon Moffatt, RN, BSN, MS (Chair) David Hoffman, DPS, CCE Glen P. Mays, PhD, MPH Senior Advisor, Public Health Leadership and Bureau Director, New York State Department F. Douglas Scutchfield Endowed Professor in Transformation of Health Health Services and Systems Research Association of State and Territorial Health Clinical Professor, UAlbany School of Public College of Public Health, University of Officials Health Kentucky

Tom Eckstein, MBA David Lindeman, PhD Judith A. Monroe, MD Principal Director, CITRIS Health, CITRIS and the President and CEO Arundel Metrics, Inc. Banatao Institute CDC Foundation

Jeffrey P. Engel, MD Natalia Loskutova, MD, PhD Heidi Holt, MPA (Staff) State Health Director Director of Evaluation, National Research Public Health Advisor North Carolina Department of Health and Network Alzheimer’s Disease and Healthy Aging Human Services American Academy of Family Physicians Program Centers for Disease Control and Prevention K. Lynn Gallagher, JD Cabinet Secretary New Mexico Department of Health

TIMELY, ACCURATE, COMPASSIONATE, AND ACTIONABLE DIAGNOSIS WORKGROUP

Robert Egge (Chair) David Hoffman, DPS, CCE Blythe Winchester, MD, MPH, CMD Chief Public Policy Officer Bureau Director, New York State Department Certified Medical Director, Tsali Care Center Alzheimer’s Association of Health Geriatrician, Cherokee Indian Hospital; Clinical Professor, UAlbany School of Public Chief Clinical Consultant, Geriatrics and Patty Blake Health Palliative Care, Indian Health Service President of Senior Products Tufts Health Plan Ian Kremer, JD Molly French, MS (Staff) Executive Director Director of Public Health Richard Fortinsky, PhD LEAD Coalition Alzheimer’s Association Professor and Health Net, Inc., Endowed Chair in Geriatrics and Gerontology Thomas Prohaska, PhD Heidi Holt, MPA (Staff) UConn Center on Aging and Department of College of Health and Human Services Public Health Advisor Medicine George Mason University Alzheimer’s Disease and Healthy Aging University of Connecticut School of Medicine Program Centers for Disease Control and Prevention

58 independence. to enhancetheir health,well-being,and for peoplewithdementiaand their caregivers informed interventions,services, andsupports E-7 people inallstagesofdementia. use of,careplanningandrelated toolsfor E-6 arise duringthecourseofdementia. avert, andrespondtochallengesthattypically people withdementiaandcaregiversanticipate, E-5 exploitation ofpeoplewithdementia. E-4 maintaining caregivers’ healthandwell-being. people withdementiaandtheimportanceof the importantroleofcaregiversinsupporting E-3 management forpeopleacrossthelifespan. that promotehealthandchroniccondition factors intoexistinghealthcommunications about brainhealthandcognitivedeclinerisk E-2 benefits ofearlydetectionanddiagnosis. discussed withahealthprofessional,and and cognitiveaging,changesthatshouldbe E-1 Strengthenknowledgeabout,andgreater Provideinformationandtoolstohelp Integratethebestavailableevidence Educatethepublicaboutbrainhealth Improve accesstoanduseof evidence- Promote preventionofabuse,neglect,and Increase messagingthatemphasizesboth APPENDIX C: Actions EDUCATE &EMPOWER ACTIONS BY and reduction identification Risk

quality ofcare Diagnosis &

T Caregiving OPIC Education and professionals training for AREA

evidence for Data and action

59 Appendix C: Actions by Topic Area DEVELOP POLICIES & MOBILIZE PARTNERSHIPS Risk Education and Data and Diagnosis & Actions identification Caregiving training for evidence for quality of care and reduction professionals action

P-1 Promote the use of effective interventions and best practices to protect brain health, address cognitive impairment, and help meet the needs of caregivers for people with dementia.

P-2 Assure academic programs, professional associations, and accreditation and certification entities incorporate the best available science about brain health, cognitive impairment, and dementia caregiving into training for the current and future public health workforces.

P-3 Support better informed decisions by educating policymakers on the basics of cognitive health and impairment, the impact of dementia on caregivers and communities, and the role of public health in addressing this priority problem.

P-4 Improve inclusion of healthcare quality measures that address cognitive assessments, the delivery of care planning to people with diagnosed dementia, and improved outcomes.

P-5 Engage public and private partners in ongoing planning efforts to establish services and policies that promote supportive communities and workplaces for people with dementia and their caregivers.

P-6 Assure public health plans that guide emergency preparedness and emergency response address the special needs of people with dementia and their caregivers, support access to critical health information during crises, and prepare emergency professionals for situations involving people with dementia.

60 supportive programs andservices. information and tools,andmakereferralsto encourage caregivers’ useofavailable be mindfulofthehealthrisks for caregivers, W-7 Educatehealthcareprofessionals to needs amongpeopleatallstages ofdementia. injury risks,andattendingtobehavioral health importance oftreatingco-morbidities,addressing W-6 Educatehealthcareprofessionalsaboutthe interprofessional trainingandotherstrategies. care servicestopeoplewithdementiathrough professionals whodeliverhealthcareandother W-5 management. and engagecaregivers,asappropriate,incare stages ofdementia,offer counselingandreferral, dementia, provideeffective careplanningatall to supportearlydiagnosesanddisclosureof healthcare professionals’ abilityandwillingness W-4 W-3 maintaining theirhealthandwell-being. essential roleofcaregiversandtheimportance healthcare providersthatunderscoresthe disease interventionsincludemessagingfor W-2 Ensurethathealthpromotionandchronic public healthaction. information, tools,andassistancetosupport the roleofpublichealth,andsources (including detection)anddementiacaregiving, about thebestavailableevidenceondementia information toinformthosetheyserve. about brainhealthandwaystousethe professionals onsourcesofreliableinformation W-1 Strengthenthecompetenciesof Fostercontinuingeducationtoimprove Educatepublichealthandhealthcare Educate publichealthprofessionals Actions ASSURE A COMPETENTWORKFORCE and reduction identification Risk

quality ofcare Diagnosis &

Caregiving Education and professionals training for

evidence for Data and action

61 Appendix C: Actions by Topic Area MONITOR & EVALUATE Risk Education and Data and Diagnosis & Actions identification Caregiving training for evidence for quality of care and reduction professionals action M-1 Implement the Behavioral Risk Factor Surveillance System (BRFSS) optional module for Cognitive Decline in 2019 or 2020, and the BRFSS optional module for Caregiving in 2021 or 2022.

M-2 Support national data collection on dementia and caregiving.

M-3 Use data gleaned through available surveillance strategies and other sources to inform the public health program and policy response to cognitive health, impairment, and caregiving.

M-4 Embed evaluation into training and caregiving support programs to determine program accessibility, effectiveness, and impact.

M-5 Estimate the gap between workforce capacity and anticipated demand for services to support people with dementia and their caregivers.

62 8. 7. 6. 12. 11. 10. 9. 5. 4. 3. 2. 1.

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64 Disclaimer The findings and conclusions in this report do not necessarily reflect the official position of the Centers for Disease Control and Prevention or the affiliated institutions of any of the contributors. Use of trade names is for identification only and does not imply endorsement by any of contributors’ institutions. Links to non-federal government organizations found in this document are provided solely as a service to the reader. These links do not constitute an endorsement of these organizations or their programs by CDC or the federal government, and none should be inferred. CDC is not responsible for the content of the individual organization sites listed in this document. CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same. CDC increases the health security of our nation. As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s disease®.