Understanding and Responding to Dementia Related Behavior

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After reading this article, you should be able to:

  • Identify common triggers for behaviors associated with dementia
  • Explain the four step process for assessing and identifying challenging behaviors
  • List strategies to address challenging dementia-related behaviors
  • Identify Resources available to the families and individuals living with Dementia

Understanding and Responding to Dementia Related Behavior

Dementia Behaviors are Usually Triggered

Triggers of Behavioral Changes

  • Pain or discomfort
  • Over-stimulation or boredom
  • Fear or frustrations
  • Unfamiliar surroundings
  • Complicated tasks

Challenging Dementia Related Behaviors

  • Anxiety or Agitation
  • Confusion or Suspicion
  • Aggression
  • Repetition
  • Wandering

Understanding and Addressing the Behavior

There are 4 primary steps to understanding and addressing the behaviors:

1. Detect and Connect

2. Address Physical Needs

3. Address Emotional Needs

4. Re-assess and Plan for the Next Time

Step 1: Detect and Connect

  • Join the person in his or her reality by trying to see the world through his or her eyes.
  • Understand the person’s reality in context before intervening:
    What took place before, during and after the behavior took place?
  • Approach the person calmly and respectfully.

Step 2: Address Physical Needs

  • In Home Alzheimer’s and Dementia Care

    Medical Issues, starting with pain

  • Physical Problems such as:
    Hunger or Thirst
    Lack of social interaction
    Need to use the bathroom
    Medication reactions
  • Environmental triggers for discomfort
    Restrictive clothing
    Room temperature
    Lighting, Glare or Sounds

Step 3: Address Emotional Needs

  • Think about how the situation feels to the person
  • Focus on the person’s feelings, not facts
  • Reinforce that you are there to help
  • Use your knowledge of the person’s preferences to provide effective interventions
  • Redirect the energy into a more soothing activity

Step 4: Reassess and Plan for the Next Time

  • Go back to detecting and connecting
  • Join the person’s reality
  • What went well and what didn’t?
  • How can you make adjustments?
  • Create an intervention plan that includes who can help with assessment and intervention, what to try and in what order, and what to do if the situation escalates

Dementia Caregivers

Applying the 4 Step Process

  • Behavior Identification
  • Scenario Description
  • Application of 4 Step Process

Behavior 1: Anxiety or Agitation

Restlessness or pacing, distress, or over-reliance on caregivers.

Ann, a 75- year-old woman with Alzheimer’s Disease was pacing the hallways in her house in the evenings, saying, “I need to go, I need to go”. She would not stop walking, even for meals. Her family would give her sandwiches to eat while she was walking. Though she used a cane, she was getting blisters on her feet and had lost weight from not eating. Her family would ask Ann to sit down, but as soon as she sat, she would immediately get up and start pacing again. Ann had worked for 40 years as a nurse on the night shift, and her agitation began every evening. Her shoes were worn and she appeared to be in pain as she walked.

Step 1: Detect and Connect

  • The pacing begins in the evenings, is Ann “sundowning”?
  • Ask Ann where she “needs to go” and offer to help her get there. Redirect by stating “before we go, it’s time for dinner, shall we eat first?”

Step 2: Address Physical Needs

  • Ann appears to be in pain as she walks, are her shoes comfortable and in good shape?
  • Is Ann getting enough exercise during the day? A regular exercise routine can disperse with excess energy making it easier to control the evening pacing
  • Ann is showing visible signs of weight loss. Make sure to keep healthy snacks available and offer frequently along with fluids

Step 3: Address Emotional Needs

  • Acknowledge you understand Ann’s feelings and the “need to go”. Provide reassurance, companionship and offer to engage in a soothing activity
  • Engage in a conversation about Ann’s nursing days, helping her to remember her years helping others

Step 4: Re-assess and Plan for the Next Time

  • Assume there will be anxiety and agitation again as disease progresses
  • Maintain regular routines including exercise and meal times
  • Avoid extremes in social situations

Behavior 2: Confusion or Suspicion

home care agencyThe person may not recognize familiar people, places or things; they may forget relationships or names for people and common items. This confusion can result in the person suspecting others of theft, infidelity or other improper behavior.

When Ann’s family comes to visit and the evening begins, she becomes very suspicious that people are trying to get into her house and are watching her through the big picture windows. She becomes suspicious of her family for not making the people “go away” and that they must all “be in cahoots” with each other.

Step 1: Detect and Connect

  • Is Ann  is reacting to someone in the present, something imagined or in the past
  • Reassure Ann and check the environment for the potential source of the confusion.

Step 2: Address Physical Needs

  • Rule out an infection such as an UTI. Review side effects of the medications as some can cause increased hallucinations
  • Is Ann seeing the reflection of family members in the windows? Try pulling the drapes or closing the blinds as the evening approaches
  • Respond with a brief and accurate explanation, but avoid arguing

Step 3: Address Emotional Needs

  • Briefly acknowledge Ann’s feelings and let her know that you understand and will take care of the situation
  • Agree, validate and apologize as needed remembering you have entered their reality
  • Try not to take the person’s confusion personally

Step 4: Re-assess and Plan for the Next Time

  • Show photos and other reminders to trigger the person’s recognition and to alleviate confusion and or suspicions.
  • Take down mirrors, increase/decrease lighting or noise levels
  • Provide multiples of often used items that are lost or misplaced

Behavior 3: Aggression

Aggressive behavior may be verbal or physical. It may occur suddenly for no apparent reason, or may emerge following a trigger.

Ann’s husband, Bill, is standing at the back of the room watching television. Ann walks in and tells him “You aren’t the boss here!”. Bill ignores the comment and continues to watch TV. Ann comes closer, raises her voice, and says, “You can’t tell me what to do!” When Bill doesn’t respond, Ann hits him in the arm with her fist. Prior to her dementia symptoms, Ann was quite calm by nature and would have never exhibited this behavior. Lately, her outbursts are becoming more frequent. Ann continues to come at Bill, who retreats from her and locks himself in the bathroom to avoid further conflict. He does not have his cell phone with him. Since both have been avid hunters, there are guns in the house, but Bill has removed all of the ammunition.

Step 1: Detect and Connect

  • Did something on TV frighten or alarm Ann? Loud noises or violence?
  • Gently call Ann by name and let her know that you are there and you want to help before attempting to intervene
  • If you think it would help the situation, apologize

Step 2: Address Physical Needs

  • Rule out medical causes. UTI’s can be a chief culprit
  • Make sure the noise level is not overbearing – turn down the sound
  • Remove any distractions by turning the channel or turning the TV off
  • Try listening to soothing music
  • Remember safety first for all involved

Step 3: Address Emotional Needs

  • Focus on feelings, not facts; Be positive and reassuring
  • Check the stress level of overwhelmed caregivers being cautious not to display anger or fear.

Step 4: Re-assess and Plan for the Next Time

  • Avoid being taken by surprise
  • Make sure neighbors are aware of the person’s diagnosis
  • Safety first – be sure to have a plan for protecting everyone in case the aggression becomes dangerous

Behavior 4: Repetition

Alzheimer’s and Dementia Care for Henrico, VAThe person living with dementia may do or say something over and over again, repeating words, questions or behaviors. These are seldom harmful but may become stressful for the caregivers.

Ann has recently been concerned about an upcoming visit from her daughter. Though her daughter, Katie, is not scheduled to visit for another 2 weeks, Ann has begun to repeatedly ask her husband, Bill, when Katie will arrive. Ann asks several times throughout the day – every day- which is wearing on Bill. He finds himself answering impatiently or even ignoring Ann’s questions. At the same time, Ann is going into the bathroom much more frequently than she ever has before, every 10-20 minutes.

Step 1: Detect and Connect

  • Stay calm and be patient
  • Accept the behavior rather than fighting to stop it

Step 2: Address Physical Needs

  • Ann is spending more time in the bathroom than she normally does. Could she possibly have an UTI or other medical issue?
  • Consider making Ann a calendar and marking off the days until Katie’s arrival.
  • Continue to answer Ann’s questions calmly and with brief answers

Step 3: Address Emotional Needs

  • Repeat the same answer to help Ann who may not be able to process or retain your words
  • Use memory aides like notes, photos and calendars
  • Engage in a purposeful activity to distract and redirect the Ann’s focus – make a scrapbook with favorite mementoes from Katie’s childhood

Step 4: Re-assess and Plan for the Next Time

  • Remember that repetition is a symptom of the disease
  • Understand it may not be possible to stop the repetition
  • Keep simple puzzles, crafts and coloring books available

Behavior 5: Wandering

Senior Care at Home

Wandering and getting lost are common things among people living with dementia and can happen during any stage of the disease. If the person living with dementia is able to walk, he or she may wander.

Ann and Bill spent the early years of their marriage in North Carolina. They moved out of the state into their current home 30 years ago. Ann constantly asks to visit NC. She frequently leaves the house in the morning, while Bill is in the shower and states, “I am going to North Carolina”. She has been found by neighbors on many occasions at their church, on neighborhood streets, and one time at a very busy intersection near their home. Their daughter, Katie, is worried about potential injury. Bill is also worried and is at a loss about what to do. Bill is logical and try to explain to Ann the reasons they cannot visit North Carolina, though he recognizes that this approach is not working. This approach also tends to make Ann more angry and the wandering starts to increase at those times.

Step 1: Detect and Connect

  • Understand that long-term memories may be affecting the behavior.  Is Ann trying to go to work? Run errands? Visit friends?
  • Accept what the person says about the wandering being goal directed

Step 2: Address Physical Needs

  • Look for pain first as sometimes wandering begins as an attempt to move away from the pain
  • Have there been any changes in routine or daily exercise? Offer to go on a walk or take a drive.
  • Make sure the Ann is not responding to an unmet need. Try to engage Ann in a calming activity like folding washcloths or sorting colored clothes to prepare for the trip.

Step 3: Address Emotional Needs

  • Provide reassurance that he or she is safe and that you are together
  • Offer to help Ann get safely to where she would like to go, or offer to take her later

Step 4: Re-assess and Plan for the Next Time

  • Create an environment for safe wandering like an enclosed garden with circular walking paths
  • Make changes to the person’s physical surroundings to camouflage them: place dark mats in front of doors to make it appear there are holes to be avoided; paint the doors the same color as the walls; place clothes on doorknobs to disguise them
  • Consider a community day program to provide supervised activities

Dementia Resources

Assisting Hands Home Care
1606 Santa Rosa Rd., Suite 125, Henrico, VA 23229
(804) 500-9787
Contact: Cathy Hamlin, Executive Administrator

Teepa Snow
P.O. Box 430, Efland, NC 27243

Virginia Department for Aging and Rehabilitative Services
1610 Forest Avenue, Suite 100, Henrico, VA 23229
804-662-9333 or 1-800-552-3402
Contact: George Worthington

Alzheimer’s Association
Greater Richmond Chapter
4600 Cox Road, Suite 130, Glenn Allen, VA 23060
804-967-2588 or 1-800-272-3900
Contact: Marie Kolendo, Executive Director

AARP Virginia
707 East Main Street, Suite 910, Richmond, VA 23219


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