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Developing a Memory CareProgram 1999, Senior Living University. All rights reserved.Reproduction or translation of any part of this work, by whatever means, beyond that permitted by Section 107or 108 of the United States Copyright Act without permission of the copyright owners is unlawful. Inquiriesregarding permission for use of material contained in this publication should be addressed to: Senior LivingUniversity, 830 Cherry Drive, Hershey, PA 17033

᪽ Acknowledgments ᪽Thanks and acknowledgment for contributions to this publication areoffered to the following:William Keane, MS, MBA, Co-authorDeb Price, RNC, MSN, CS, Co-authorJoan Hyde, Ph.D., Senior EditorJohn Zeisel, Ph.D., Senior EditorDiane Byrne, MS, Subject Matter ExpertCarol Edelstein, Subject Matter ExpertDelores Moyer, Subject Matter ExpertLin Noyes, RN, MSN, Subject Matter ExpertJulie Thomas, RNC, BA, Subject Matter ExpertKaren Wayne, ContributorDavid D. Peete, ContributorDavid M. Goldberg, Contributor 1999iii

Table of Contents Introduction: About This Book1Who This WorkBook Is forThe Language of Assisted LivingThe Assumptions of the WorkBookHow to Use This WorkBookPhase ElementsIntended OutcomesKey InformationKey WordsAre You Ready to Move on?34481010101010Phase One: “So Why Do You Want to Get Into ThisBusiness?” Pre-Planning Phase11Intended OutcomesKey InformationAre You Ready to Move on?121214Phase Two: “If You Are Still With Us, Let’s Get Started WithBuilding the Foundation” Basic/Background Research15Intended OutcomesWhat Happens as We Age?Factors That Influence How We AgeHealthy Aging Is NormalLet’s Take a Closer Look at Older AdultsLooking at Age in Other WaysNormal Physical AgingWhat About Other Changes That Occur in Aging?What Do We Mean by Ageism?161719202021222629Developing aMemory CareProgramv 1.0 1999v

What Is Delirium?What Is Depression?What Is Dementia?How Does Dementia Affect a Person?Pseudo-DementiaIrreversible DementiaWhat Is Alzheimer’s Disease?Causes of Alzheimer’s DiseaseWho Develops Alzheimer’s Disease?At What Age Does Alzheimer’s Disease Develop?How Does Alzheimer’s Disease Affect a Person?How Is a Person Diagnosed with Alzheimer’s/Dementia?Diagnosis of Alzheimer’s DiseaseCan Alzheimer’s Disease Be Cured?Designing for Disease Effects and ProgressionUnderstanding Alzheimer’s Disease Progression in StagesWhat Services Are Available for People With Alzheimer’s/Dementia?What Is the Role of Assisted Living in Dementia-Capable Care?Specialized Dementia-Capable Care in Assisted LivingWhat Services Are Available for People with Dementiaand Their Families?Key WordsAre You Ready to Move se Three: “How Do You Know If There Is An AssistedLiving Opportunity in Your Market?” Market Research61viIntended OutcomesKey InformationTask 1—Getting StartedTask 2—Forming the Leadership TeamCreating a Work Plan From Your Personal Mission StatementWhat About Using Consultants on the Project?Task 3—Consumer Market ProfileTask 4—Consumer Market AnalysisDefine Resident Characteristics/Qualitative IssuesTask 5—Regulatory AnalysisState Certificate of Need ProcessState Licensure ProcessState Regulatory ProcessLocal Licensure ProcessLocal Regulatory ProcessFederal Regulatory/Oversight TrendsIndustry Oversight and Accreditation TrendsTask 6—Comprehensive Site Option Assessment626263676970727677838485858888898990

Task 7—Comprehensive Service InventoryTask 8—Competitive AssessmentTask 9—Payment/Managed Care AnalysisTask 10—Market Demand Scenarios and Critical Success Factorsfor My ProgramAre You Ready to Move on?Key Words949599102107110Phase Four: “Now that You Know Your Market, You AreReady To Define Your Program and Mission Statement!”Key Elements of Program DefinitionIntended OutcomesKey InformationYour Program LocationWho Will You Serve?What Are the State and Local Licensing Regulations?What Is Aging-in-Place?Full Disclosure of Dementia-Capable ServicesWhat Is Negotiated Risk?Negotiated Risk Questions to AnswerYour Dementia-Capable TeamDementia-Capable Education and Training for Your TeamYour Philosophy of Dementia Care and ServiceWhat Is a Program Mission Statement?Developing a Mission StatementHow Can You Revive Your Existing Mission Statementfor Dementia-Capable Care?Rights and Responsibilities of Dementia-Capable CareResident RightsAre Rights for Residents With Alzheimer’s/Dementia Different?Family Rights and ResponsibilitiesThe Rights of the Dementia Care StaffMeasuring the Success of the Dementia-Capable ProgramHow Does Assessment Lead to Continuous Quality Improvement?Daily Evaluation of the ProgramKey WordsAre You Ready to Move 7129129130131132133136136139140Developing aMemory CareProgramv 1.0 1999vii

Phase Five: Building Program Leadership and theDementia-Capable Team Recruiting, Hiring, and Staffing theProgramIntended OutcomesThe Role of the Dementia Program Team LeaderQualities to Look for in the Program LeaderThe Leader Must Be Commited to the Dementia-Capable ProgramHow Do You Define Leadership?How Does the Leader Inspire a Shared Mission?How Does the Leader Foster Team Spirit?How Can You Encourage Individual and Team Accomplishments?What Is Modeling in This Context?How to Model ChoiceHow to Model DignityHow to Model IndividualityThe Management TeamShould Your Program Have a Medical Director?The Role of the Resident’s Primary Care PhysicianWhat Qualities Should You Look for in the Management Team?The Dementia-Capable Resident Assistant or CaregiverThe Dementia-Capable Caregiver’s ApproachCaregivers Approach Each Resident as an IndividualCaregivers Should Help Plan Resident CareWho Fills Other Key Support Positions?Developing Dementia-Capability With Existing StaffEffective Recruitment Strategies for Your Dementia Care ProgramHow Should You Educate the Team and Build TheirDementia-Capable Skills?Successful Staff Development TechniquesGuest SpeakersThe Role of Orientation for Dementia-Capable Team MembersWhat About Ongoing Education for the Team?What Training Resources Exist for the Dementia-Capable Program?How Can You Retain the Dementia-Capable Team?How Can You Ensure Team Satisfaction?Team Building in Dementia-Capable ProgramsPerformance EvaluationsKey WordsAre You Ready to Move 169169170172173

Phase Six: Designing The Essential Program Components175Intended OutcomesFamily Involvement From Pre-Admission onTouring the Residence Before Move-InFull Disclosure of Program and ServicesWhat About the Resident Who Has No Family?Pre-Admission Resident Needs AssessmentWhat Does a Needs Assessment Include?The Family InterviewWhat About Move-In Day?On Move-In DayWhat Happens After Move-In Day?The Needs Assessment Builds the Individualized Service PlanHow Does the Individualized Service Plan Help You?Planning Resident Care—The ISP MeetingsContinuous Care Planning to Meet Residents’ Changing NeedsWhat About a Resident Who Has Coexisting Illnesses?Assistive Devices Common to Assisted LivingWhat Should I Know About a Resident’s Changing Condition?How Do I Critically Observe Residents?What to ObserveHealth Care and Wellness in Your Dementia-Capable ProgramHow Do You Meet Residents’ Nutritional Needs?What About Medication Management?Medications That Slow the Progression of Alzheimer’s/DementiaWhat Are Psychotropic Medications?The Life Enrichment Program for Dementia CareHelping a Resident and Her Family Plan for the End of LifeCommunity Challenges for the Dementia Care TeamWhat Triggers Challenging Behavior?Safety and Security Issues for Your Dementia ProgramWanderingWhat About Resident Transfers and Discharges?Evaluating Continuing CareTransfer and Discharge TimelineKey WordsAre You Ready to Move 22224225226Developing aMemory CareProgramv 1.0 1999ix

Phase Seven: “Enhancing Your Program Through aCreative Environment” Physical Environment/DesignIntended OutcomesDesign Considerations for New ConstructionThe Physical Environment for Dementia-CapableRecreating the Resident’s HomeHow Does the Dementia Care Program Mirror theTraditional Home Setting?Maintaining Dignity Through Physical DesignOffering Resident Choice Through DesignShould You Build Private Bedrooms or Shared?Promoting Individuality Through DesignEnhancing Independence Through Physical DesignMore About Using Outdoor SpaceAdditional Design Considerations for New ConstructionRetrofitting Your Existing Assisted Living ResidenceAdding a Specialized Dementia Care Program to Assisted LivingRetrofitting an Institutional FacilityKey WordsAre You Ready to Move 6248249Phase Eight: “The Role of Your Program for the Family andthe Greater Community” Family and Community251Intended OutcomesHow Are Families Your Partners in Care?Families Views of Quality CareFamilies as CustomersThe Needs of FamiliesThe Assisted Living Decision Process for FamiliesNurturing the Family-Staff RelationshipHow Do You Involve the Family in Your Program?The Changing Role of Family CaregiversHow Do You Help Families Stay Involved?Family Support GroupsThe Family CouncilWhat Are Family Activity Clubs?Fostering Family CommunicationWhat Is a Memory Book?What About Personal Notes From Family Members?What Is a Family-Friendly Assessment Tool?The Role of Your Program in the Greater 66267267268271

How Do You Develop a Dynamic Volunteer Program?Who Is Responsible for the Volunteer Program?What Qualities Do Your Volunteers Need?What About Children as Volunteers?Types of Intergenerational ProgramsWhat About Volunteer Pet Programs?The Contributions Volunteers Give to Your ProgramKey WordsAre You Ready to Move on?272273274275276277278279280Phase Nine: “Now That You Know Your Stuff, How Do YouBuild and Finance Your Dementia-Capable Program?” 281Intended OutcomesKey InformationHow Do Ownership and Governance Influence Your Program?Who “Owns” Your Organization?The Organizational Structure of Your ResidenceThe Business as a WholeThe Responsibilities of the Governing BoardThe Role of Ownership and ManagementCommunicating Your Program to Financial PartnersHow Do Lenders and Investors Evaluate Your Strengths?Organizing Your TeamThe Assisted Living Business PlanMarket Studies and AppraisalsFinancial ForecastingMore About the Assisted Living Regulatory EnvironmentWhat About Special Permits and Zoning for Assisted Living?Defusing Community Opposition to Your Dementia Care ProgramFinancing OptionsChoosing Financing Based on Your MissionWhat About Refinancing Nonprofit Organizations?Your Financial Strategy—Preparing Your PresentationWhy Do Some Projects Fail?Key WordsAre You Ready to Move 4295296298300301303304305Developing aMemory CareProgramv 1.0 1999xi

Phase Ten: Building an Effective Marketing andCommunications Planxii307Intended OutcomesKey InformationProduct Definition/Strategies/GoalsExternal Environmental SummaryInternal Environmental SummaryCompetitive SummaryAlzheimer’s/Dementia Program Critical Success FactorsTarget Market SummaryMarketing Action StepsAction Step OptionsMarketing Action Plan308310310313315317319321325326327Summary329The Next Generation: Ongoing Research and EvaluationResearching Aging and the Causes of Alzheimer’s/DementiaLinks to Alzheimer’s in Normal Development and AgingGenetic Links to Alzheimer’s DiseaseBetter Methods of Diagnosing Alzheimer’s DiseaseBrain ScanningPsychological AssessmentsImproved Medical and Behavioral TreatmentsAdvances in Behavioral Approaches: Dementia-CapableAssisted LivingSeeking the Best in Behavioral ApproachesTrends in Dementia-Capable Assisted LivingTrends in Environmental DesignCustomer Satisfaction and Resident OutcomesTrends in Staff Education, Training, and RatiosManaged Care’s Impact on Dementia-Capable CareRegulation and Accreditation of Dementia-Capable Assisted LivingThe Ongoing Dynamic of Dementia-Capable 58339

AppendicesGlossary A: GlossaryGlossary B: BibliographyGlossary C: Contributors341351353Developing aMemory CareProgramv 1.0 1999xiii

Rights and Responsibilities of Dementia-Capable Care 129 Resident Rights 129 Are Rights for Residents With Alzheimer’s/Dementia Different? 130 Family Rights and Responsibilities 131 The Rights of the Dementia Care Staff 132 Measuring the Success of the D