Mental Health with Individuals with IDD in Long Term Care SUSAN MCLAUGHLIN-BELTZ, MA, PHD BEHAVIORAL NEUROSCIENTIST/NEUROPSYCHOLOGIST

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1 Mental Health with Individuals with IDD in Long Term Care SUSAN MCLAUGHLIN-BELTZ, MA, PHD BEHAVIORAL NEUROSCIENTIST/NEUROPSYCHOLOGIST

2 Learning Objectives 1. Understand the manifestations of common mental health conditions in nursing home patients with intellectual and developmental disabilities. 2. Understand how to communicate with individuals with a dual diagnosis of IDD and Mental Health conditions in nursing homes. 3. Understand how to manage common behavioral issues in individuals with IDD and mental illness who live in nursing homes.

3 Manifestations of Mental Health Challenges Withdrawal from previously enjoyed activities Demanding of services or items Loss of appetite/ Increase in appetite Insomnia/hypersomnia Somatic complaints Behavioral outbursts Regression

4 Common Co-occurring Disorders Dementia Depression Anxiety Bipolar Disorder Schizophrenia

5 Dementia and Down Syndrome Alzheimer s disease and Down syndrome share a genetic connection, leading to the increased risk of dementia at an earlier age. Down syndrome occurs when an individual has a full or partial third copy of chromosome 21. (Typically, people have two copies of each chromosome.) Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer s disease as it carries a gene that produces one of the key proteins involved with changes in the brain caused by Alzheimer s. Additionally, scientists have located several genes on chromosome 21 that are involved in the aging process and that contribute to the increased risk of Alzheimer s disease. It is this unique property of chromosome 21 that makes the disease a more acute concern for people with Down syndrome than those with other forms of intellectual disability. (National Down Syndrome Society, 2012)

6 Techniques for Intervening with People with IDD 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?

7 Techniques for Intervening with People with IDD 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

8 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!

9 Managing Behavioral Issues 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.

10 Common Triggers 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

11 Managing Behaviors Identify the trigger Modify the trigger by: Provide reassurance or a gentle touch to hands or shoulders if appropriate Redirect to a pleasurable activity or topic of conversation Remember that different approaches work at different times Identify areas of sensory overload Be patient and flexible

12 Guidelines for Communication

13 Sensory Thresholds Many people with IDD have low sensory thresholds Sensory Areas Include: Auditory Visual Taste Smell Tactile Vestibular proprioceptive

14 Sensory Thresholds Behaviors often result when a threshold has been surpassed and there is not an adaptive response If the threshold is surpassed, they must counteract the threshold in order to respond adaptively The behavioral response continuum places Acting in Accordance with Threshold at one end of the continuum and Acting to Counteract Threshold at the other end. Acting in Accordance with Threshold means the person acts more passively and consistently with the neurological thresholds. Acting to Counteract the Threshold means the person behaves more actively to work against the threshold.

15 Neurological Threshold Continuum High (habituation) Behavioral Response Continuum Acting in Acting to Accordance Counteract With Threshold Threshold Poor Sensation Registration Seeking Low (sensitization) Sensitivity To Stimuli Sensation Avoiding

16 Trauma Many people with IDD have experienced trauma in their lifetime Martorell, Almudena MA (2009) et al. found that traumatic experiences have a predictive role in the development of mental illness in people with IDD Research, not surprisingly, has found that people with developmental disabilities have alarmingly high rates of trauma -- Individuals with disabilities are four times more likely to be victims of crimes as non-disabled (Sobsey, 1996); prevalence of sexual abuse for children with autism spectrum disorder (ASD) is 16.6 percent compared to 8 percent for general population; the risk of abuse increases 78 percent due to exposure to the disability service system (Sobsey & Doe, 1991).

17 Sources of Trauma for Individuals with IDD Sexual Abuse Hingsberger 8 out of 10 females and 6 out of 10 males with developmental disabilities have been sexually abused more than once Social Trauma Bullying, Name- calling, Verbal Abuse Trauma of Institutionalization, Foster-care Placements Trauma of Physical Abuse and Neglect

18 The Behavioral Pyramid Emotions that are expressed as behaviors are often rooted in trauma When we only address the behavior, we miss the true cause and root of the difficulties Behavior Emotion Trauma

19 Trauma-mind/Trauma Response The Limbic System is activated during a trauma response Dan Siegel People will revert to the age that trauma first occurred when in a trauma response mode. The Sympathetic Nervous System can only be calmed by the Parasympathetic Nervous System, not by the rational mind. Rational mind shuts down Soothing, calming reassurance is needed

20 Trauma Response FLIGHT SUBMIT SHAME AND HOPELESSNESS FIGHT ATTACHMENT ISSUE - NEEDY FREEZE

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22 Triggers that Activate Trauma Responses Past Abuse Present Triggers 1. Physical Abuse 1. Restraints 2. Verbal Abuse 2. Teasing Demands, Parental tones, Judgments, Labels, Sarcasm 3. Sexual Abuse 3. Rejection, lack of relationships, Inappropriate touching 4. Neglect 4. Lack of Attention 5. Abandonment 5. Loss, death, staff turnover

23 Ingredients Necessary for Recovery PERCEIVED SAFETY EMPOWERMENT CONNECTION

24 Key to Safety Sense of Safety is subjective Understanding and Responsive Staff Providing Comfort (Food, Shelter, Emotional Support) Physical Safety (from others and self) Dialogue Safe Person Ability to get emotional, social, and physical needs met

25 Key to Empowerment Real choices, no fake ones Real input into daily life Being listened to Being asked real questions such as: What is really bothering you? How are you feeling? Tell me what s going on. What do you think you should do? Exercises

26 Key to Connection Fostering peer relationships Listening Skills: Consistent time each day Body language Eye contact Reflecting: say back what you are hearing use the last several words Paraphrasing: sum up what you are hearing Asking the right questions: How, what, etc. Not yes or no Being responsive and listening, even to non-verbal input

27 Positive Identity Development Negative Identity Positive Identity Not the person who gets the job Who I am Not the person who gets married What I do well Not the person who drives Who my friends are Not the person who plays on a team What my preferences are Not the person who is popular or Where I make a difference liked Not the cool one What I am proud of

28 Traumatic Stress Symptoms come in three clusters Hyper-vigilance: always on red-alert Constriction: avoiding things that can be triggering Intrusion: having upsetting thoughts, dreams, or memories

29 Hypervigilance Startling easily/frequently Irritability Difficulty concentrating Difficulty relaxing Difficulty falling or staying asleep Needing to be near or in sight of exits; agitation when blocked

30 Constriction Avoids activities, places, people, things to keep from being reminded/ triggered (avoidance can ripple out, become more and more removed from obvious triggers of incident) Can t remember important parts of the trauma Much less interest in significant activities Feeling detached from others Narrow range of emotions, numbness Lack of a sense of future

31 Intrusion Flashbacks Nightmares Disturbing images/thoughts/fantasies Physical response (sweating, shaking, freezing, lashing out) to internal or external triggers that resemble the event (this is very common!)

32 Two Systems that Trauma Disrupts 1. Emotional responses and regulation 2. Context: the ability to assess Does this involve me? What is actually happening? (van der Kolk, 2012) Trauma results in loss of inhibition (whatever they need to do to protect themselves is OK) and perspective taking (is the situation directed at them or an actual threat to them).

33 Increase Integration by Shifting Brain Function Emotional responses can be the scariest, for you and for the individual. When someone is triggered, you want to help someone move from the brain stem (body function), to the hippocampus (emotions), to the cortex (thinking). Try interrupting with a positive association to a sensory experience (a good smell, your soothing voice, the feel of grass, etc.) and then a thinking task like sorting cards in order of complexity. This activates the left brain, which helps inhibit the right brain and the amygdala.

34 Understand How People Survive Think about the manipulative person as someone who is good at getting his/her needs met. Depending on the context, this may be how they survived. How long would it take you to let go of skills that kept you alive? Responding to these survival strategies by staying curious, open, accepting and loving will help you stay calm, and then you can teach this.

35 Survival You want to teach them to ask for what they need, but remember that they need to feel safe and in control for a long time (probably longer than you think it should take) before they will trust that they don t need to manipulate or lie any more. Make sure that it really is safe. Remember too: any time they are stressed, they will go back to the last thing that worked for them. This is how humans survive.

36 Manage Your Own Stress Response! Brains respond to other brains. Only when you are centered and calm can you help the person across from you become centeredness and calm. What response do you have when someone is: Loud Withdrawn Lying Angry Sexually expressive Not listening Not following rules

37 Practicing Mindfulness Notice your thoughts. Don t try to change them or think of nothing -this is impossible. Rather, observe them, like watching clouds. When you realize you have become distracted by thinking about something besides your body and breath, don t judge yourself. Just return to noticing your surroundings and sensations. If you never leave (awareness), you never get the chance to practice coming back (Jim Drescher, 2013)

38 Practicing Mindfulness Everybody can learn this, according to therapist Julie Brown. People with I/DD may not be able to articulate some states, but they can notice when their attention wanders and and then come back to focus. Focus on simple sensory experiences, and shape the teaching as you would with anyone "I can't imagine any genius having an easier time [learning mindfulness] than a person with IDD

39 Practicing Mindfulness Find a comfortable seat (or you can walk slowly). Set a timer so you don t have to check the clock. 5 minutes is a good starting place; you can increase the time as you practice. (Bazzano, A. et al, 2015) Start by noticing your breathing and the sensations in your body: tightness, relaxation, discomfort, etc. You don t have to fix anything-just notice it. If you feel uncomfortable, experiment a little: what does uncomfortable feel like? Then you may decide to shift position. Notice what that feels like. Notice the sounds, smells, and sights around you.

40 Questions Thank you for the opportunity to present this topic.