The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

A Caregiver's Guide to Down Syndrome & Alzheimer's Disease

A large part of the management of dementia consists of providing appropriate support as the disease progresses. To help effectively care for an individual with Alzheimer’s disease, it is extremely important to learn general caregiving principles and strategies specific to their changing needs. This section aims to serve as a brief primer and basic introduction to caregiving principles in the setting of dementia.

Approach to Caregiving

THE TRUTH ABOUT ALZHEIMER’S DISEASE

Alzheimer’s disease is not a normal part of aging. It is progressive and ultimately fatal. Unfortunately, there is no cure for Alzheimer’s disease, but it is possible for caregivers to maximize the independence and quality of life of the individual with Alzheimer’s and Down syndrome, despite the presence of dementia. Living through this experience requires tremendous support. Build a team by recruiting, accepting and utilizing whatever resources are available.

One of the key features of Alzheimer’s disease is a loss of short term memory and inability to learn and recall new information. Thus, expectations must be readjusted to accept that the goal is no longer to teach new skills or increase independence.

COMMON BEHAVIORAL PITFALLS

Traditional methods of offering incentives or rewards become counterproductive, as they require the individual to remember the incentive in the short-term, i.e., “if you can keep quiet while we’re in the van, I’ll take you for ice cream.” The ability to learn and recall new rules is no longer possible for someone with Alzheimer’s disease and can lead to frustration for everyone involved. Similarly, attempting to negotiate with someone with dementia using logic or reason will often be a fruitless and frustrating experience, as these skills are progressively impaired. Behavior changes are oftenbeyond the control of the individual with dementia. They are not done to spite the caregiver, although at times it may be difficult not to take certain actions personally. 

EMPHASIZING A POSITIVE APPROACH

Non-verbal communication is critical. As dementia progresses, individuals rely more heavily on emotional cues to interpret communication, tuning into the tone of voice, facial expressions and body language. Pay attention to non-verbal communication and create an atmosphere that conveys a sense of safety and nurturing. Smile and avoid negative tones to your voice, as the individual may feel threatened or scared by this and react negatively. Avoid negative words like “no,” “stop” or “don’t.” As dementia progresses, the content of what is being said is less important than the emotion and the tone behind what is being said. Use positive or neutral language to redirect the conversation. Listen for the emotion and connect on that level. What is it that he or she is really trying to say? I’m anxious? Confused? Depressed? Scared? Frustrated? Angry? 

FIRST STEPS TO IMPROVED COMMUNICATION

Always look for opportunities to offer comfort and reassurance. Join in the person’s reality; begin where they are. Don’t correct them. Always look for emotions behind the words and connect there. Try to avoid these common problems:

  • Trying to convince, negotiate or appeal to logic or reason
  • Expecting an individual to follow new rules or guidelines
  • Engaging in an argument
  • Correcting 

GENERAL VERBAL COMMUNICATION TIPS

  • Use short, simple words and sentences
  • Give one-step directions and ask one question at a time
  • Patiently wait for a response
  • Avoid open-ended questions. Provide choices or suggestions: For example, instead of “What do you want for breakfast?” Say, “Do you want oatmeal or toast?”
  • Expect to repeat information or questions
  • Turn negative statements into positive statements. For example, instead of “Don’t go into the kitchen.” Say, “Come with me, I need your help with something.”
  • Make statements rather than asking questions. For example, instead of: “Do you want to go?” Say, “Let’s go!”

THE ART OF REDIRECTING THE CONVERSATION

Redirection is an important and powerful communication tool at times of frustration, anger and anxiety. The technique redirects the tone or focus of the conversation back to something positive or pleasantly distracting. Try not to create a totally false story. Focus on a piece of the information that will make things okay for the person. Eliminate details that will not help the person, or that may cause anxiety, fear or defensiveness.

INTERVENING ON BEHAVIORS

Behavior is a form of communication, although it’s not always clear what these behaviors might communicate. Problem behaviors can pose a safety risk to self or others. These include physical and verbal aggressiveness, self-injury, inappropriate sexual behavior, wandering or getting lost. Nuisance behaviors increase frustration and anxiety for self and others, but are generally not a safety risk. These include pacing, hiding, hoarding, rummaging or clinging. Behaviors are sometimes expressed as a reaction to something specific. This is commonly referred to as a behavioral “trigger.” Common triggers to look out for are:

  • Communication problems (misunderstanding what is being said)
  • Frustration due to tasks that are too difficult or overwhelming
  • Environmental stressors (loud sounds, including loud voices, poor lighting, disruptive housemate)
  • Personal upheaval (family illness, death of loved one, change in staff member)
  • Medical status (physical pain, discomfort, illness)
  • Stress of the caregiver or environment

Caregivers can attempt to modify the trigger by intervening before, or at the onset, of agitation in the following ways:

  • Provide reassurance and, if appropriate, a gentle touch
  • Use redirection techniques or distraction to something pleasurable
  • Keep in mind that different approaches work at different times
  • Be patient and flexible

Steps to Successful Communication

 


NDSS RESOURCES

  • A Caregiver's Guide to Alzheimer's: Presentation Video and Slides

EXTERNAL RESOURCES

  • Buddy Walk
  • NDSS Yourway
  • My Great Story