Taking Care: Managing Dementia with Dignity By Geri R. Hall, PhD, RN, FAAN and Anna D. Burke, MD The Barrow Neurological Foundation would like to thank Julia and George Argyros for their unwavering commitment to support the patients and care partners on this journey. Taking Care: Managing Dementia with Dignity Handbook Table of Contents Section One— Dementia and Alzheimer’s Disease: The Basics .......................................1 What is Dementia? .............................................................2 What is Mild Cognitive Impairment? ...............................................2 Causes of Dementia ............................................................3 Progression of Dementia ........................................................3 Warning Signs: When to See a Doctor for Memory Loss ................................. 5 Diagnosing Dementia ...........................................................6 Question 1. Is Memory Loss Present? ............................................6 Question 2. What Could Be Causing the Memory Loss and Other Changes? ...............7 Question 3. Are the Symptoms and Findings Consistent with What We Know About a Particular Dementia? .........................8 Treating Dementia .............................................................8 Medications ...............................................................8 Types of Medications for Dementing Illness. 9 Cognitive Enhancers ...................................................9 Antidepressants .....................................................10 Anxiolytics ..........................................................10 Medications for Sleep .................................................10 Atypical Antipsychotics ................................................10 Clinical Studies and Research .................................................11 Common Dementing Illnesses: The Basics of Care. 12 Amnestic Mild Cognitive Impairment ............................................12 Alzheimer’s Disease ........................................................12 Early Stages ...........................................................12 Moderate Stages ........................................................13 Behaviors in Moderate Stages ...........................................14 What Triggers and Prevents Problem Behaviors and How to Manage Them ......15 Fatigue ......................................................15 Changes in Environment, Routine, or Caregiver ........................16 Overwhelming or Misleading Stimuli ................................18 Loss of Meaningful Activities ......................................18 Creating Too Much Demand ......................................19 Illness .......................................................21 Advanced Stages .......................................................22 Engaging Hospice Services ...................................................23 i Section Two— Non-Alzheimer’s Dementias .....................................................25 Why Bother?. 25 Dementia with Lewy Bodies .....................................................26 What is Lewy Body Disease? ..................................................26 What is a Lewy Body? .......................................................26 Movement ............................................................27 Task Performance .......................................................27 Autonomic Nervous System ...............................................27 Medications: Increased Sensitivity. 29 Perception ............................................................30 Assessing Visual Perception ............................................30 Psychosis in Dementia with Lewy Bodies .........................................32 Apathy ..................................................................32 Sleep Changes ............................................................33 Memory. 33 Medical Treatment for Parkinsonian Features and Behaviors ..........................33 Non-Pharmacologic Treatment of Dementia with Lewy Bodies .........................34 Helping the Diagnostician ....................................................34 Frontotemporal Dementia .......................................................34 Frontotemporal Dementia: Behavioral Changes in Middle Age .........................35 What Does Frontotemporal Dementia Look Like? ...................................35 Diagnosing Frontotemporal Dementia ...........................................36 If You Suspect Frontotemporal Dementia .........................................36 Behavioral Changes with Frontotemporal Dementia .................................37 Vascular Dementia ............................................................37 Section Three— Care Issues as the Disease Progresses .............................................39 Developmental Regression ......................................................39 Fear of Abandonment and Nursing Home Placement ..................................39 Decision-Makers ..............................................................39 What is a Decision-Maker? How Do We Find One? ..................................39 What is a “Durable” Power of Attorney? How Does It Differ from a Regular Power of Attorney? ...42 Who Becomes a Durable Power of Attorney? ......................................42 What are Common Health Decisions for Someone with Moderate to Advanced Dementia? ....43 Safety Issues. 44 Safety is a Concern Throughout the Illness When a Person Has Dementia ................44 Early Disease: Examples of Common Safety Issues Reported by Families .................44 Financial Issues ........................................................44 Will My Loved One Become Violent? .........................................45 When Aggression Starts ..................................................47 Are You Safe? ..........................................................47 ii Live-Alones (People with Dementia Who Live Alone) ..................................49 What Can a Family Do to Help a Person with Dementia who is Living Alone? ..............50 Driving ...... ..............................................................52 Providing Care with Dignity: Day-to-Day with Dementia ................................52 Basic Environmental Safety ...................................................52 Common Questions and Answers .................................................53 “Why Does My Person Ask the Same Question Over and Over?” .......................53 “Why Can’t I Get My Person to Sleep at Night?” ....................................53 “My Person Lies All the Time, Making Up Stories We Know Aren’t True.” .................53 “How Can I Convince My Mom That Her Parents Are Dead?” .........................54 “I Want a Candy Bar, NOW!” ..................................................54 “Everything I Say Seems to Lead to an Argument! How Can I Stop This Arguing? ...........54 “I Am Not Going to Adult Day Programming! That Is for Old People!” ....................55 “She Wants to Wear the Same Clothing Day After Day.” ..............................55 “Why Is She Resistant to Bathing?” .............................................55 “Why Is He Hiding Things and Accusing Me or Others of Stealing?” .....................56 Section Four— Caregiving ..................................................................57 Becoming a Caregiver ..........................................................57 Accepting Help ..............................................................57 Taking Care of Yourself ........................................................59 Finding Help from Family ......................................................59 Hiring In-Home Help ..........................................................60 Adult Day Programs ...........................................................60 Assisted Living and Memory Care .................................................61 How to Make the Move to Assisted Living ........................................62 Start the Conversation Early (Depending on the Stage of Memory Loss) ...............62 Choose a Community Specializing in Memory Care ..............................63 Consider Visiting the New Assisted Living Community Together Before Moving Day ......63 Schedule the Move for Their “Best Time of the Day”. 64 Bring a Simple Collection of Favorite Things ...................................64 Communicate with the New Caregiving Staff ...................................64 Section Five— Finding Help: Dementia Resources and Organizations .................................65 Local and National Alzheimer’s Disease and Related Dementias Resources ................65 Dementia-Specific Products .....................................................66 Section Six— References and Suggested Reading and Viewing Lists .................................67 References. 67 Suggested Reading List ........................................................67 Suggested Viewing List ........................................................67 iii Appendix 1— Signs to Watch For in People who Live Alone or Who are at High Risk ....................68 Classification. 68 Reported or Observed Conditions .................................................68 Observation Cues .............................................................70 Notes ....... ..............................................................72 iv Abbreviations AD - Alzheimer’s disease CPR - cardiopulmonary resuscitation