Memory and Mood symptoms in Huntington s disease

Transcription

1 Memory and Mood symptoms in Huntington s disease Daniel O Claassen, MD Vanderbilt University Medical Center

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5 Overview What is irritability? What causes irritability? How to manage irritability Practical tips

6 Irritability Characteristics Brief outburst of rage Triggered by modest or trivial event or environmental change No warning Unplanned Serves no obvious goal or aim-not manipulative, purely a response Person with HD may be embarrassed, defensive, or unaware of irritable episode

7 Irritability Characteristics Very common-70% Can precede motor symptoms by years Interpersonal relationships and employment can be at risk If untreated, can escalate into aggression or violence Very treatable and preventable

8 Management of irritability Medications are very effective Environmental change must be paired with medications

9 Medication management of irritability Medications are very effective Remission is the goal marked reduction in severity and episodes Medication Trials: Full remission can require a number of medication trials/adjustments (monthly) Drug effect: Medications often work rapidly, within 2-3 days (and wears off rapidly too) Triggers: Be mindful that psychological, social or physical triggers may result in irritability, don t over-treat single or occasional stressors

10 Medication management of irritability Choose your prescribing provider based on skill, experience but most important, a provider who is willing to work with you and measure outcome Off-label medications: All medications are off-label. i.e. not FDA approved for the treatment of irritability associated with Huntington s disease, evidence is based on consensus expert opinion Choice of medication is based on severity, symptoms, and favorable side effects First line: SSRI (Selective serotonin re-uptake inhibitors): Prozac, Zoloft, Lexapro, Paxil, etc. Associated Aggression: Neuroleptics (Atypical antipsychotics): Risperidone, Zyprexa, Seroquel, Abilify

11 Environmental management of irritability Prevention: medications and environmental interventions Triggers: Be mindful that psychological, social or physical triggers may result in irritability Intervention effect: Environmental interventions often work slowly, involving trial and error, and may take a month or more to show progress Lack of successful intervention may be disease progression: The environment may be presenting a challenge the person with HD can no longer manage

12 Understanding Thought in Normal Brains The motor control centers are deep in the brain and connect to other brain region by superhighways or circuits The motor control centers connect to the frontal brain and together they control executive functions such as: Attention and concentration Short term memory Inhibiting behavior Social interpretations, such as body language and other nonverbal behaviors Spatial relationships (Directions) Multitasking These abilities are unconscious

13 What s it like to think with HD?

14 Could you watch all these channels at once?

15 What would it be like to be unable to do something, even knowing the absolute worst thing would happen if you don t get it done? Catastrophe of the day: Get fired Can t pay the bills Lose the house Get divorced Live in a shelter Go to jail No one will care about me Live in a nursing home

16 How tough would it be to communicate if you couldn t distinguish between these facial expressions?

17 How hard would it be to make friends if you couldn t control your temper?

18 Would you feel like a burden if you were stuck in a routine and couldn t change it?

19 What if suicide felt like your best option

20 What would it be like to be unaware but still understand? No Problem Face the facts

21 Miscommunication Disinhibited Anxiety Understand What s it like to think with HD? Frustration Slow Despair

22 For people with HD Be your best self always Believe that who you are is more important than what you do Do what makes you happy, avoid what doesn t Practice 3 grateful-s each day Exercise at least 3 times a week Sleep well every night Find someone you really trust to tell you the truth Don t drink alcohol Do take medications Find a good doctor or therapist who s willing to go into the depths with you without over-reacting

23 For people who love someone with HD All of the above Take care of yourself Get educated

24 Irritability indicates a need Many times a behavior is an expression of a need figure out that need, meet it and the irritability will improve. If you stop the behavior, but do not meet the need, you may have another behavior to deal with. The biggest needs are relational: attention, social support, reassurance and connection.

25 Relationship Strategies Relationship: Affirmations, encouragement, familiarity are understandable to the person with HD Rather than attempt to improve insight, validate and help solve the problem for the patient Accept that irritability will happen from time to time Clear expectations, simple and concrete steps Avoid confrontations if at all possible, choose the bad guy if you can t. Don t provoke the person with HD to prove a point

26 The Four (4) R s Repeat: repeat the thought or the feeling expressed e.g. You are upset about.., you want to get out of here, you feel that no-one is listening; you would like to know where your money is now. Reassure: the feeling is OK. e.g. that would make anyone mad/irritated/worried. It would be nice to be free to do anything right now; it s hard when you feel like no-one listens. It s important to manage your money. Redirect: talk about something else, distract. e.g. Maybe XX can help? I can t do anything about that right now, but I will put that in my report to the nurse. While we are waiting to see about that, maybe we can just talk about the fourth of July did you see fireworks this year? Relax Don t rush let the person with HD take their time.

27 Other Specific Needs Hunger Change in Routine/structure Fatigue Illness Medication Issues Dehydration Pain Recent losses Holidays, special events Political or civic events Change in the lives of important family members Disease progression

28 Structural strategies to meet needs If something goes wrong, ask how the environment didn t support the person s need Routine, rituals, structure will increase predictability and reduce anxiety for the person with HD Simplify the environment: reduce multiple stimuli, noise, clutter, unexpected visits or activities Give the person with HD extra time for everything

29 Keep track of what s happened so you can experiment: The Book of You only remember the last 3 events or the worst event, especially under stress The Book of ME Medical information you might need in an emergency medication lists, insurance cards, providers names and contact info, legal documents (MOST forms, Power of attorney forms), recent labs or tests Safety plan: who to call, emergency services in your area For psychiatric emergencies, ask for a CIT officer, not regular law enforcement Mobile crisis teams may be available in your county Ask you health care professional what they want you to do in the event of an emergency Behavior log

30 Behavior Log: Keeping track of what s happened and experiment Look for triggers, variations Time of day Medication adherence Relationship to food Mood surrounding events Recent or upcoming trips or visits Communication issues Sleep pattern Involved people Try different approaches (the 4 Rs) and watch what happens.

31 Practical Support for Caregivers (and Family Members) Lead the plan! Define what success looks like to you. Communicate with your other family members. Develop the healthcare team Develop links with local trusted specific resources Find time to recharge Be creative! Celebrate little successes (she gained 5 pounds! He is wearing shoes today! She took a bath! He hasn t fallen for three weeks!)

32 One to one care is exhausting. This is difficult work, and will eventually result in compassion fatigue and burnout without recharging yourself. Private duty nursing or CNAs (one-to-one monitoring/arms length), though costly can be implemented for relief and may: Keep the person with HD at home longer Give the care partner enough space to think creatively Allow for time to investigate an appropriate facility Close supervision and placement may reduce but will not eliminate the need for your constant supervision.

33 Thanks to the patients and HD family members who shared their experiences with me and taught me these wonderful pearls of wisdom!