Navigating Behavioral Crisis: Tips for Caregivers
by Jolene Sharp, Chief Strategy Officer, TN Council on Developmental DisabilitiesThere are few things harder to navigate as a caregiver than a loved one’s behavioral crisis.
People with intellectual or developmental disabilities (IDD) experience higher rates of mental and behavioral health needs than people without disabilities. They also face more barriers to getting the behavior supports and mental healthcare they need.1[1] The lack of supports can increase the likelihood of crisis for your loved one. This creates tremendous strain on everyone involved, including for you as the caregiver. Our Council is working across service systems to improve behavioral health supports for people with IDD. In the meantime, many families must navigate a difficult day-to-day reality that may involve behavioral crises. Below, we’ve shared some tips for caregivers of a loved one with IDD who experiences a behavioral crisis. These are not easy answers. We know that following these tips are not simple and may not solve the crisis. But we hope they might help you have a few more tools in your caregiver kit – and perhaps also feel a little less alone.
Before a crisis:
- Stay as mentally healthy as you can. It can be really hard to care for yourself when you are caring for someone with IDD. But your mental health may be the most important resource you have. Starting from a place of calm means you will be more able to stay calm in a crisis. Caring for your own mental health is part of being the best caregiver possible for your loved one. Think of it like putting on your own oxygen mask first, as the airline attendants always tell us to do.
- Build a toolkit of calming items and strategies. Carry items you know are soothing to your loved one, like noise reducing headphones, a favorite stuffed animal, sensory items, favorite music, videos, and snacks. Track the phrases, gestures, or sounds the person finds reassuring. Having ideas and items ready ahead of time can help reduce stress for both you and your loved one. If possible, talk to your loved one on a good day about what helps them feel better during stressful times.
- Protect your loved one’s autonomy. People with IDD often have less control over their daily lives than people without disabilities. This lack of control can lead to frustration, anxiety, depression, and other mental health conditions. Children and adults with IDD should get support to make as many decisions about their own lives as possible. Research has shown this type of “supported decision-making” has huge mental health benefits.
During a crisis:
- Focus on ending the crisis. There will be time later to think about what happened and why. The top priority in the moment is de-escalation.
- Keep responses short and avoid questions or demands. A loved one in a behavioral crisis is overwhelmed. They may not be able to reason or process questions or directions. Verbal instructions can add to the escalation.
- Offer understanding and reassurance. Validate the person’s feelings rather than trying to correct their behavior. Let them know you’re there to help and listen. Let them know you understand that they are having a hard time.
- Remove objects or people that pose a safety risk. Rather than trying to physically move your loved one during a crisis, instead try to make the current environment as safe as possible. Prioritize personal safety over property. If moving your loved one is truly necessary, explain as simply as possible exactly what needs to happen.
- Do everything possible to regulate your own emotions. A loved one’s behavior can be very triggering for caregivers. Develop your own toolkit for staying calm. Remember: even when it feels targeted at you, a behavioral crisis is your loved one’s plea for help. Your ability to regulate your emotions can help your loved one feel safe and regain their ability to self-regulate.
- Follow your loved one’s lead on what they need in the moment. If your loved one appears overstimulated, reduce sensory input. (For example, dim the lights, close doors to limit background noise, and avoid speaking.) If your loved one reacts to being approached, respect their need for space.
- Consider calling in back-up support. Does your loved one have someone they respond especially well to? Even if that person can’t be physically present, a video or phone call to a special friend, family member, or trusted professional might provide a calming voice that can help de-escalate the situation.
After a crisis:
- Give yourself time to reset. Remaining calm and present during a loved one’s behavioral crisis can take a huge amount of physical and emotional energy. Your brain and body need time to recover – even if that’s just stepping into another room for a good cry and some deep breathing.
- Seek professional help for yourself if at all possible. Access to mental healthcare can be difficult and expensive. But your ability to stay healthy for yourself and your loved one may depend on getting help to process past trauma and to feel better prepared for the future.
- Reflect on lessons learned. Your loved one with IDD may be able to help explain what triggered the behavior crisis and what could help things go differently. Sometimes, it takes detective work of your own. If crises are happening frequently, consider tracking them to look for trends or patterns. Do they always happen on the same day or time of day? Are there things in common with the settings or situations where they occur? This may tell you what supports or changes could help prevent future crises.
- Find ways to reconnect and enjoy your loved one with IDD. Once you’ve had time to rest and recover, it can be healing to share a little fun with your loved one. Seek simple things that bring you both joy. Share laughter or delight together in something beautiful. Spend a few minutes in a favorite activity. When life is hard, these connected moments of joy can be a lifeline.
- Know that you are not alone. If possible, find peer support from other caregivers in your area. Just knowing there are others who “get it” can help reduce stress. If you have the desire and ability, look for ways to share your story and advocate for better supports for families like yours. (Hint: our Council is here to help! Reach out any time.)
[1] 1. “National Needs Assessment: Mental Health Services for People with IDD,” University of Alaska Anchorage Center for Human Development, 2020
Resources for Behavioral Health and Decision-Making Support
Tennessee is the first state in the nation to offer one central place to learn about decision-making options.
The Center for Decision-Making Support is a one-stop-shop for learning about supported decision-making and other tools to help your loved one with important choices, including about healthcare, finances, and benefits.
- Follow your loved one’s early cues. If they seem overwhelmed or show signs of agitation, reduce questions or demands and offer calming items. Consider moving to give your loved one more space or leaving the situation before escalation occurs.
- Watch for physical symptoms or warning signs of agitation. People with IDD may have a harder time saying when they are in pain or physical discomfort, including from injury, hunger, hot/cold, or illness. Behavior may actually be communicating a physical need.
- Use our Healthy Behavior Check-in to help with understanding your loved one’s needs. It can be easy as busy caregivers to miss signs of a need until the behavioral response becomes acute.
Behavioral Health Resources for People with IDD and their Caregivers
From our Council: Behavior Supports Information and Resources
From the LifeCourse Framework: Caregiver Well-Being tools
Tennessee’s Behavioral Health Safety Net - If you are 3 years of age or older, have a qualifying mental health diagnosis, and have no behavioral health insurance, you may qualify:
If you are your loved one is at risk of suicide: 988 Suicide & Crisis Lifeline
Jolene Sharp has worked for the TN Council on Developmental Disabilities for 5 years. She is mom to two kids with disabilities, both of whom have behavioral health needs.