More about Cognition: A Social Work Perspective

1. More about Cognition:A Social Work Perspective Anne Leserman, MSW, LISW Mid Atlantic Regional Social Worker HDSA October 23, 2012

2. Disclaimers The presentation today is for informational use only The recommendations made are general guidelines only All attendees are encouraged to consult with their primary care provider, neurologist or other healthcare provider about any advice, exercise, medication, treatment, nutritional supplement or regimen that may have been mentioned as part of this presentation.

3. Presenter disclosure The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months: No relationships to disclose Anne Leserman, LISW

4. HD triad of symptoms motor behavior cognitive

5. Why emphasis on cognitive symptoms? • Cognitive issues are often the earliest and most misunderstood of symptoms • Cause problems in relationships of work and family • Become the HD expert and educate your family and network

6. Cognitive changes • Learning • Problems with attention • Difficulty sequencing complex tasks • Difficulty learning new tasks TRY • Break complex info into simple steps • Write down the steps • Practice steps • Allow time to learn

7. Cognitive changes • Memory • Difficulty learning new information • Impaired ability to recall TRY • Provide cues, hints, missing words • Avoid open ended questions • Offer choice of alternatives • “To do” list, written reminders • Maintain daily routine

8. Cognitive changes • Visual-spatial deficits • Impaired body image • Loss of ability to orient visually • Difficulty reading visual cues TRY • Orient to new places • Write directions • Use signs • Avoid independent travel to new areas

9. Cognitive changes • Bradyphrenia • Speed of processing or slowed thinking TRY • Allow person enough time to answer or react • Be patient during long pauses • Maintain focus on person • Limit distractions in the environment • Be aware of person’s personal preferences

10. Executive functions • Changes in frontal lobe impact behaviors • Organizing • Establishing priority of events • Controlling impulses • Monitoring self awareness • Beginning and ending activities • Creative thinking • Problem solving

11. Executive functions • Filtering, organizing and prioritizing TRY • Structure tasks • Organize information • Maintain routines • Filter out distractions “I know she knows how to do this, she has done it a thousand times”

12. Executive functions • Beginning and ending activities • Initiation-getting started “She’s bored. She just sits in that chair”- initiation or apathy? “He won’t do anything we ask him to do”

13. Executive functions • Impulse control TRY • Redirect from anger source • Avoid confrontation or ultimatum • Keep self and environment calm • Identify “triggers” • Safety is priority

14. Executive functions • Monitoring self awareness • Repetition • Getting stuck TRY • Use distraction to shift attention • Use humor to get “unstuck” • Establish time limit

15. Unawareness • Anosognosia • Lack of awareness • Unable to recognize deficits • Unable to evaluate own behavior • Unintentionally “noncompliant” TRY • Accept as untreatable • Why does it need to be addressed? • Ask person to choose incentives for compliance

16. Levels of unawareness Does not explicitly deny deficit but never mentions it spontaneously and appears unconcerned Actively claim they do not have HD and attribute deficits to other causes Unaware of HD. Describe experiences inaccurately (usually based on events in the past) Unaware and confused with mental decline

17. Issues that arise Anger and frustration Why can’t I live alone? Driving Working Caring for children Smoking I don’t have HD My HD is cured

18. Family response Family needs to refine and organize their roles to adapt Logic not effective Change in equity of relationship Another level of loss Family dynamics Resource availability

19. Strategies Insight not the central goal Person with HD may never “accept” the disease Develop a contract for compliance but “sidestep” the awareness issues Avoid power struggles Consider that pHD may not always be the inaccurate reporter

20. Caregivers look for help • Join a support group and learn how others are handling issues • Find a local “expert” who will provide information that loved one respects and listens to • Seek a therapist, counselor or religious/spiritual leader for yourself • Create a support system separate from family • Be clear about your needs and who can help best with each need • Sister who accompanies you to the movies may not be the same person you ask to make a meal or stay with loved one

21. Caregiver responsibility Learn more about HD- just like you’re doing with webinars and websites Learn how to communicate with health care professionals who may or may not know much about HD

22. Caregiver tips • Accept your feelings- may be anger, guilt, resentment, grief • find someone to talk to avoid feelings overwhelming you • Don't try to do it all • understand what your needs are and don’t be afraid to ask for help • Attend to your own needs • exercise, eat right, don’t drink or smoke excessively, get adequate sleep, take care of your physical health • Take advantage of community services • resources in your community?

23. Past and future webinars to assist Crisis situations and de-escalation strategies- Arik Johnson, PsyD Simplifying life to prepare for cognitive changes- Arik Johnson, PsyD Caregiver interventions- Mary Edmondson, MD Caregiving coping strategies- Marsha Miller, PhD Care for the caregiver- Lisa Kjer, LCSW Future webinar, November 14 Family dynamics, Amy Chesire, LCSW-R, MSG Webinars found at www.hdsa.org/ccorner

24. Thank you for your time and attention! Contact information- Anne Leserman, LISW aleserman@hdsa.org