Coping with Behavior Change in Dementia:
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1 Coping with Behavior Change in Dementia: A Family Caregiver s Guide Beth Spencer and Laurie White This handbook is written in honor of the many hundreds of family members we have had the privilege of working with over the past three decades. Your courage, steadfastness and problem-solving abilities continue to inspire us. Most of what is included in this book, we have learned from you. Special thanks to Tom White who put in many hours editing, raising questions, keeping us in line and becoming an expert in behaviors and dementia. Whisppub LLC March 2015 Visit Whisppub.com for book ordering information.
2 About the Authors... vi Introduction...1 About This Handbook Terminology and Types of Dementia References Talking with Your Relative...6 Common Communication Changes in the Early Stages Common Communication Changes as Dementia Progresses When You Don t Understand What Your Relative is Saying When Your Relative Does Not Understand What You Are Saying Things to Avoid Doing Other Considerations for Talking with Your Relative Becoming a Detective: A Problem-Solving Approach The 4 A s: Anxiety, Agitation, Anger and Aggression Possible Physical, Medical and Emotional Causes of Anxiety, Agitation, Anger and Aggression Strategies to Try for Possible Physical, Medical, and Emotional Causes of Anxiety, Agitation, Anger and Aggression.. 19 Possible Environmental Causes of Anxiety, Agitation, Anger and Aggression Strategies to Try for Possible Environmental Causes of Anxiety, Agitation, Anger and Aggression Common Causes of Anger or Aggression Strategies to Try for Anger or Aggression Communication Strategies to Help Prevent Anxiety, Agitation, Anger and Aggression Staying Safe When Your Relative is Angry or Aggressive Other Considerations for Anxiety, Agitation, Anger and Aggression References Why Won t She Take a Bath? Helping Your Relative with Bathing Possible Physical, Medical and Emotional Causes of Bathing Problems Strategies to Try for Possible Physical, Medical and Emotional Causes of Bathing Problems Possible Environmental Causes of Bathing Problems Strategies to Try for Possible Environmental Causes of Bathing Problems Safety Strategies in the Bathroom Possible Communication Challenges Related to Bathing Problems Ensuring Comfort and Privacy References and Resources Taking the Stress Out of Dressing...34 Possible Physical, Medical and Emotional Causes of Dressing and Undressing Strategies to Try for Possible Physical, Medical and Emotional Causes of Dressing and Undressing Clothing Considerations When Buying New Clothes Clothing for Women Clothing for Men Possible Environmental Causes of Dressing Challenges ii
3 Strategies to Try for Possible Environmental Causes of Dressing Challenges Other Possible Causes of Dressing Challenges Strategies to Try for Other Possible Causes of Dressing Challenges Possible Causes for Undressing in Public Areas Strategies to Try for Disrobing Possible Causes For Layering or Wearing Clothes Inside Out or Backwards Strategies to Try When Clothes are Layered or Worn Inside Out or Backwards Communication Tips for Dressing Challenges Eating: The Ingredients for Successful Meals Possible Physical, Medical and Emotional Causes of Eating Challenges Overeating Undereating Strategies to Try for Overeating or Eating Too Much Strategies to Try for Undereating or Eating Too Little Additional Physical, Medical and Emotional Causes of Eating Challenges Strategies for Responding to Additional Physical, Medical and Emotional Causes of Eating Challenges Possible Environmental Causes of Eating Challenges Strategies for Responding to Possible Environmental Causes of Eating Challenges Other Considerations for Eating Challenges Mouth Care: Caring for Teeth, Gums and Dentures Possible Physical, Medical and Emotional Causes of Poor Oral Hygiene Strategies to Try for Possible Physical, Medical and Emotional Causes of Poor Oral Hygiene Possible Environmental Causes of Poor Oral Hygiene Strategies to Try for Possible Environmental Causes of Poor Oral Hygiene Other Considerations for Good Mouth Care Communication Tips and Strategies for Good Mouth Care References When You Gotta Go: Helping Your Relative in the Bathroom...60 Possible Physical, Medical and Emotional Causes of Incontinence Strategies to Try for Possible Physical, Medical, and Emotional Causes of Incontinence Possible Environmental Causes of Incontinence Strategies for Possible Environmental Causes of Incontinence Strategies for Night Time Incontinence Other Possible Causes of Incontinence Communication Strategies for Incontinence Clothing Strategies and Incontinence Products Bowel Incontinence or Problems with Constipation Other Considerations Related to Bowel Incontinence or Constipation Over and Over Again: Repetitive Behaviors Possible Physical, Medical, and Emotional Causes of Repetitive Behaviors Strategies to Try for Possible Physical, Medical and Emotional Causes of Repetitive Behaviors iii
4 Possible Environmental Causes of Repetitive Actions, Statements and Questions Environmental Strategies to Try When Your Relative Asks Questions Repeatedly Strategies to Try for Other Causes of Repetitive Behaviors Other Considerations for Repetitive Actions and Questions References There s No Place Like Home: When Your Relative Wants to Go Home...78 Where is Home? What is Home? Possible Physical, Medical and Emotional Causes of Wanting to Go Home Strategies to Try for Possible Physical, Medical and Emotional Causes of Wanting to Go Home Possible Environmental Causes of Wanting to Go Home Strategies to Try for Possible Environmental Causes of Wanting to Go Home In a Day Center Setting: Suggestions For You to Offer Staff In a Residential Care Setting: Suggestions For You to Offer Staff Strategies to Try When A New Resident Focuses On Wanting To Go Home Other Considerations for New Residents References Walking, Pacing, Wandering or Exercising Possible Physical, Medical and Emotional Causes of Walking, Pacing, Wandering or Exercising Strategies to Try for Possible Physical, Medical and Emotional Causes of Walking, Pacing, Wandering or Exercising.. 87 Possible Environmental Causes of Walking, Pacing, Wandering or Exercising Strategies for Possible Environmental Causes of Walking, Pacing, Wandering or Exercising Possible Causes Related to Past History Strategies for Causes Related to Past History Possible Causes Related to Being Up or Walking at Night Strategies for Being Up at Night Safety Measures Communication and Safety Strategies for Coaxing Your Relative Back to the House Suggestions for Engaging Your Relative in Meaningful Activities at Home Other Considerations for Walking, Pacing, Wandering and Exercising References When You Don t See Things the Same Way: Paranoia, Delusions and Hallucinations Definitions and Examples Possible Physical, Medical and Emotional Causes of Paranoia, Delusions and Hallucinations Strategies to Try for Possible Physical, Medical, and Emotional Causes of Paranoia, Delusions and Hallucinations Possible Environmental Causes of Paranoia, Delusions and Hallucinations Strategies to Try for Possible Environmental Causes of Paranoia, Delusions and Hallucinations Communication Tips and Strategies Other Considerations for Paranoia, Delusions and Hallucinations References iv
5 And Hours To Go Before We Sleep: Sleep and Sundowning Possible Physical, Medical and Emotional Causes of Sleep Problems Strategies to Try for Possible Physical, Medical and Emotional Causes of Sleep Problems Possible Environmental Causes of Sleep Problems Strategies to Try for Possible Environmental Causes of Sleep Problems Other Possible Causes of Sleep Problems Strategies to Try for Other Possible Causes of Sleep Problems Allowing Your Relative to be Up at Night Safety Considerations Sundowning References Physical Intimacy and Sexual Behavior What is Normal? Physical Intimacy Issues for Care Partners Strategies When Physical Intimacy is Difficult with Your Partner Possible Physical, Medical and Emotional Causes of Hypersexuality and Disinhibition Strategies for Hypersexuality and Disinhibition Other Considerations Resources References Glossary Resource List for People with Dementia, Care Partners and Health Care Professionals v
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