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HD Reach
1004 Dresser Ct, Suite 107
Raleigh, NC 27609

Monday through Friday 9 AM - 5 PM

HD Reach
1004 Dresser Ct, Suite 107
Raleigh, NC 27609

Monday through Friday 9 AM - 5 PM

For Caregivers

Coping Using iCARE

iCARE is a way to remember different techniques when emotions run high.

iCARE–Ignore behavior

  • Ignoring a behavior is an option, and is always worth a try.

  • As perseveration is neurological in origin, ignoring perseveration will not change or may increase the behavior. Ignoring irritability over time may result in escalating aggression.

  • If behavior is motivated in part by the person’s desire to gain attention or other positive response from the caregiver, ignoring will work.

  • Ignoring a short-term behavior in response to a temporary trigger will send the message that the person with HD must retain responsibility for their actions.

  • Non-judgmental observation with a behavior log is helpful to sort out cause and effect.

iCARE–Change strategies

Change the environment: Reduce stimulation and noise. Move to another room. Ask the kids to play outside. Ask a friend to come over, or ask a family member not to come over for a while if he or she represents a trigger.

Change the behavior: Behaviors can be gradually modified in people with frontal lobe disease, but it takes time and patience. People learn at different paces, meaning the number of repetitions needed to learn a new behavior is different from person to person. The person with HD learns at a different pace than he or she has in the past, and will change based on their current stage of disease.

Paired stimulus: The care partner enters the behavior or activity with the person and adds particular elements to the activity. Use the activity to gradually teach new, less problematic behaviors. (e.g., during laundry activities, have the person fold or stack washcloths instead of pacing around the room. Sing a favorite song together from a happy time while bathing or dressing). This can be a way for the care partner and person with HD to develop or remember happy moments together.

Token economy: This method of behavioral change is based upon rewards, not punishment. If the person does what he or she is expected (or asked) to do, he or she earns an immediate consistent reward. If the person with HD doesn’t do the behavior, they don’t get the reward. It takes time before people begin to realize they aren’t going to get what they want unless they do what you have asked them to do. There may be a temporary increase in negative behavior until the person realizes the connection between their behavior and the reward (this is called an “extinction burst”). This method takes time, patience, and consistency. Punishment, especially non-verbal punishment (eye rolling, the deep sigh, a frown on your face) is ineffective! Keep the rewards simple, like a favorite drink, or listening to music together. It will need to be personalized, but it doesn’t have to be complex or take a long time. After the person has learned the new behavior and is doing it consistently, the reward must continue, but the process will likely be easier. Even very difficult behaviors can be managed with this strategy.

Change your own behavior: The outcome of the person with HD is more dependent on your behavior and ability to cope than any other factor. Try these strategies to see if they help:

  • Stop what you are doing.

    Enter the world of the person with HD, and show that person you care and want to understand. Let the person know you won’t leave him or her alone to struggle with the pain of HD symptoms. This may not always be possible, but must occur on some regular and consistent basis to maintain your relationship and develop trust.

  • Take time away.

    Caregiving is a demanding job that includes physical and emotional work. You will burn out and become ineffective if you don’t get away once in a while.

  • Get more help.

    Having another person work with you to observe behavior and problem solve with you can be the key to solutions.

  • Work with a cognitive behavioral therapist.

    Someone who understands behavior identification and change strategies can make a big impact in behavioral change. Seeing a therapist may also have the added benefit of encouraging you and offering the validation and support you need to keep going.

  • Meet other caregivers.

    Caregivers from around the world have developed successful strategies. There is no reason to reinvent the wheel. Suggestions include:
    Contact HD Reach staff for a family member mentor.
    • Attend a support group.
    • Find support online at HD Lighthouse.
    • Watch a web-based caregiver forum like HDSA caregivers corner webinar.
    • Listen to help4hd, an internet-based radio talk show.

  • Three things.

    Write down three things you do right in caring for the person with HD every day. Scan your day for the positive; it will keep you confident and remind you of your resourcefulness and impact you’re having in someone else’s life.

  • Know your limits.

    If you are exhausted or can no longer care for the person with HD, don’t criticize yourself. Just find a person or facility able to provide what the person with HD needs. In the long run, it will be better to have both of your needs met than for you to beat yourself up about what you can’t do any longer.

iCARE–Avoid Triggers

Common triggers include:

  • Change in routine.

  • Change in the lives of important family members.

  • Dehydration.

  • Fatigue.

  • Holidays, special events.

  • Hunger.

  • Illness.

  • Medication Issues.

  • Pain.

  • Political or civic events.

  • Recent losses.

Always ask yourself, “Is the person with HD unwell? Does he have a cold or infection? Is she in pain? Does the person have a urinary tract infection, indigestion, or constipation?” It is particularly important to search for medical ailments in people who have problems communicating.

iCARE–Redirection

Redirection or distraction is the most common technique that breaks the behavioral cycle. Use emotionally neutral or pleasant activities as the key to redirection, such as:

  • Bring up pleasant memories.

  • Change the subject.

  • Give the person a new job (folding napkins, etc.).

  • Hold hands and walk together.

  • Move to a different place.

  • Offer comfort food.

  • Place an object (e.g., a key) in the person’s hand as a cue to move on.

  • Play soothing music.

  • Start a new activity.

iCARE–Excuses

Are you excusing behavior? Do you have difficulty asking other people for change? Everyone has limits. Create an environment where expectations are clear and well communicated. Setting limits about the behavior you will tolerate is a way of telling the person with HD you believe he or she still maintains control of their own behavior. You can’t hold the line in the heat of the moment unless you know you’re doing the right thing for the person with HD and yourself. Consider asking the person with HD ahead of time how they would like to be reminded that they need to stop doing something. In the event of unacceptable behavior, try the following:

  • Use language to break a behavioral cycle. Use a consistent phrase in a certain tone of voice. The phrase must be said in the same way each time, and works best if the same statement is linked to the same behavior. Brief statements to consider include:
    • “No more, it’s over.”
    • “We are done with that.”
    • “We aren’t going to talk about that.”
    • Call the person’s name.
    • “Hey! Hey! Hey!”

  • Actions can break a behavioral cycle:
    • Use a time-out sign with your hands: the top hand horizontal and the bottom hand vertical forming a T, followed by no talking until the person with HD calms down.
    • Give the person one or two tickets for a perseverative topic or activity and when the tickets are gone, the topic or activity is no longer allowed. (e.g., daily tickets for phone calls—5 tickets can call one person).
    • Dramatically end a topic or activity. For example, you might write the name of the topic on a card and then rip up the card and throw it away.

Set Realistic Goals!

Choose the single most important problem to change. Tackle one problem at a time, but consider multiple ways to approach it. For example, you might decide to work on irritability, and include medication management, redirection, setting limits, and working to increase trust in your relationship with the person with HD.

Address problems in this order: safety first, then address behaviors that interfere with relationships or personal/medical care, and then quality of life issues. Begin your approach this way:

  • Name the behavior.

  • Measure it (frequency, intensity, etc.).

  • Choose the strategy you will use.

  • Monitor results.

  • Be objective!

  • Ask for help.

  • Take care of yourself.

Behavior Logs

It’s helpful to keep track of behavior when determining cause and effect, especially when you’re puzzled about what the behavior might be (i.e., perseveration vs. persistence, irritability vs. justifiable anger, etc.). Behavior logs will track the results of different interventions.

Some tricks for the best use of behavior logs:

  • Complete the behavior log every day during a calm moment.

  • Follow the recording of the behavior with something pleasant for yourself. It’s not easy to go over a difficult experience in your mind, and it is helpful to soothe yourself afterwards. Drink a cup of tea or listen to music, whatever you do to make yourself feel better. For ideas, see Adult Pleasant Events Schedule.

  • Start your review of the experience at the last moment you can recall when things were going okay, right before the behavior began. Go through each action, thought, or emotion from the start of the behavior until it resolves. Don’t forget to include your own emotions and reactions.

  • Don’t judge your own actions or feelings; you are doing the best you can too.

  • Identify the real problem, not just the part of the event that was most painful for you. Be objective.

  • Include days when there is no negative behavior. It will help you put the behavior in perspective.

Safety Plans

Develop a strategy to manage behavior that is out of control or very high risk before you need it. Unsafe behaviors include suicidal thinking and behavior, aggression, or risky behavior that puts lives in danger.

  • Are there family members or neighbors you can call to come help?

  • Has your doctor suggested “as-needed” medications to use in the event of irritability or suicidal ideation?

  • How will you get your kids out of the house in the event of aggression?

  • What does your doctor want you to do in an emergency?

  • What hospital will you take your loved one to?

  • Who will you call in an emergency?

HD Reach
1004 Dresser Ct, Suite 107
Raleigh, NC 27609

Monday through Friday 9 AM - 5 PM

© HD Reach