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More about Cognition:A Social Work Perspective
Anne Leserman, MSW, LISWMid Atlantic Regional Social Worker
HDSAOctober 23, 2012
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.
Presenter disclosure
The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:
No relationships to discloseAnne Leserman, LISW
HD triad of symptoms
motor
behavior
cognitive
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
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
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
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
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
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
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”
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”
Executive functions
• Impulse control
TRY– Redirect from anger source– Avoid confrontation or ultimatum– Keep self and environment calm– Identify “triggers”– Safety is priority
Executive functions
• Monitoring self awareness– Repetition
• Getting stuck
TRY• Use distraction to shift attention• Use humor to get “unstuck”• Establish time limit
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
• 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
Levels of unawareness
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
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
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
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
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
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?
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
