Educating the Families of Individuals with Cognitive Impairment

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Educating the Families of Individuals with
Cognitive Impairment

• Rebecca Epperly, M.S. CCC-SLP
• and Emily Guill, B.S.

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Session Objectives

• 1.     Discuss potential barriers to caregiver
  education as it relates to an individuals
  emotional response to catastrophic news and
  change.
• 2.     Present a literature review that supports
  error-less learning in the therapeutic process
  and how this can be used as an educational tool
  for caregivers.
• 3.     Provide a review of how the basic
  cognitive processes of memory and attention
  interact and impact functional outcomes.
• 4.     Provide a case study example and
  discussion that compares treatment for
  remediation versus treatment for accommodation,
  and how this change in therapy focus affects
  brain injury survivors and their caregivers.

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Family It is the genesis of our being the
primary and most powerful context for
development of our values, beliefs, human
interactions rules, roles, and responsibilities

• (Rini Hindenlang, 2007)

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Social support Health

• Strong social support networks have been
  associated with healthy aging, higher functional
  status, reduction in MIs among women, reduced
  cardiovascular mortality, lower cancer and stroke
  incidence rates, and overall decreased mortality.

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Lack of social support ? outcomes

• Lack of social support negatively affect outcomes
  post stroke due to poor compliance, depression
  and stress.
• (Boden-Albala et al., 2005)
• Multiple studies report post TBI depression and
  social isolation as barriers to functional rehab
  outcomes and reduced quality of life.

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Psychosocial problems following BI

• Depression occurs in about 40 to 50 percent of
  all stroke survivors
• www.strokeassociation.org
• Numerous studies show a 25 to 50 incidence of
  depression and other psychosocial sequelae after
  TBI

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Psychosocial problems, contd

• neurobehavioral disturbance, burden of care,
  loss of social connections, and disruption of
  common patterns of relating within the family
  impact the experience of caregiving.
• (Hanks et al., p. 43, 2007)
• Increases incidence of anxiety and mood
  disorders, as well as social adjustment issues on
  the families

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Psychosocial problems are apparently contagious

• Individuals with TBI and their families can be at
  significant risk for psychosocial adjustment
  difficulties years after the medical crises have
  passed. (Johnson et al., 2004)
• According to Blonder et al. (2007) 35 of
  patients and 50 of spouses experienced
  depression post-injury.

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So its no wonder that

• Following BI there is a higher incidence of
  divorce and family breakdown
• Wood Yurdakul (1997), Studied 131 adults with
  TBI
• 49 reported divorce or separation in a 5-8 year
  period following BI
• Kreutzer et al. (2007), Studied 120 people
• 17 reported divorce after 30 and 96 months post
  injury
• Of the 120 individuals, 8 were separated after
  the follow-ups

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Ways cognitive impairment can create social
barriers

• Pragmatic impairments impact social relations
• Friends and family may be afraid or lack
  understanding of cognitive changes
• Changes or lack of self-awareness on behalf of
  the patient
• Loss of self for patient, family and friends

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Why educate families?

• To strengthen social supports through knowledge
• To produce better outcome measures
• To promote patient safety
• JCAHO makes us do it!

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Current challenges to family education in
healthcare

• Time
• Caregiver readiness
• Allied health professionals have limited training
  in education and counseling

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Challenge 1The time factor
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Time is a factor

• Shorter LOS/ Billing quotas
• Staffing/shortages
• Increased documentation demands
• Family availability

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Challenge 2Caregiver Readiness
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Stage Theory of Grief

• Disbelief
• Yearning
• Anger
• Depression
• Acceptance
• Study by Maciejewski et al. (2007) from the Yale
  University of Medicine revealed that acceptance
  and yearning are typical responses for the
  grieving.

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Stage Theory of Grief (contd)

• Study suggests that 6 months following a loss,
  the grief indicators listed previously dwindle.
• If individual continues to score high levels on
  these grief indicators after 6 months post-loss,
  they may require more assessment.
• When does the clock begin

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Who cares we are SLPs not psychologists

• It can help to keep speech-language pathologists
  within their scope of practice by shielding the
  clients from the presumption of needing to fix a
  problem.
• -Spillers, 2007

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Caregiver readinessFactors specific to cognitive
impairment

• Once acute issues are resolved, deficits emerge
• Lack of explanation and understanding of
  functional impact of cognitive impairment
• Inappropriate expectations for recovery
• The clinician needs to respect and acknowledge
  caregivers expectations

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Challenge 3 No one ever showed me how to educate
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Principles of Family Centered Care

• Rini Hindenlang, 2007

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• Any circumstance that affects
• one family member affects other members and the
  family as a whole

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• The family has a right to
• establish its own priorities
• Acknowledge them with respect even if you
  disagree

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• The family must be accepted
• as the experts concerning
• their family member

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• The clinician must collaborate with
• the family to obtain assessment information
  develop relevant goals

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• The family must be acknowledged
• as having the right to form their
• own approach to caring for their
• family member, as long as health
• and safety are not an issue

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• Clinicians must acknowledge any personal bias or
  preconceived notions re family roles and place
  them aside to assess the function
• of the family and client

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• When a family report differs greatly
• from clinical observation
• it is the clinicians responsibility to explore
  situations for their own knowledge and the
  familys, in which the clients performance
• is perceived as different

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Lets re-cap!

• I know why I have to consider families
• I know what to consider when interacting with
  families
• But what do I actually do and how do I do it?

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Embedding Education in Therapy

• To educate, lead by example

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Embedded Education

• Clinician must understand cognition and discuss
  its role during therapy
• Point out concrete examples of internal processes
• By quantifying cognition, caregivers may be
  comforted because the concept becomes real

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An example of quantifying cognition

• Attention / Working Memory

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planning flexibility organization
goal setting
new learning social judgment self
monitoring
awareness communication safety problem
solving
memory information processing
ATTENTION
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A look at Working Memory Theory

• Novel tasks require working memory, or conscious
  attention, to
• Juggle cognitive resources in order to perform
  simultaneous tasks
• Suppress habitual responses that might interfere
• Guide cognitive activity in a goal directed
  fashion
• (McDonald, Togher, Code, 1999)

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Common Patterns of Function Following BI

• Route tasks now require thought, therefore
  becoming volitional
• Everyday tasks increase load on working memory
• As demands on working memory increase, processing
  slows - Teachable moment
• Observable trade-offs begin to occur between
  accuracy speed - Teachable moment

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Two Goals of Cognitive-linguistic Therapy

• Traditional goal Increase performance by
  decreasing cognitive impairment
• Contextualized goal Achieve functional
  objectives and participate in chosen activities
  that are blocked by impairment

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Traditional Paradigm
Restorative exercises improving cognitive
function
If deficits remain
Compensatory training adapting to the presence
of a cognitive deficit
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Contextualized paradigm
Adapted from Ylvisaker et al., 2003
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Reasons for contextualized therapy

• Varied contexts and activities promote
  generalization
• Compensatory training and environmental supports
  are restorative
• Cognitive functions are intertwined
• Executive function disorders are often among the
  most debilitating problems so work together on
  self-awareness, goals setting, testing hypothesis
  and monitoring outcomes
• (Ylvisaker et al., 2003)

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Cognitive scaffolding
Recall
Pragmatics
Organization
Problem solving
Attention
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Cognitive scaffolding, contd

• Let your cueing and environmental supports be a
  visible scaffold for caregiver education
• Assess but dont test every session! Testing can
  draw unnecessary attention to weaknesses
• More is better, but peel away if needed for
  demonstration of actual ability
• Scaffolding may promote perceptions of
  self-accomplishment while decreasing perceived
  dependence on caregivers

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How the info is presented is as important as
what the info is

• Clarity
• Familiar and understandable
• Succinctness
• Directed information
• Redundancy
• Info should be provided frequently
• Respectfulness
• Acknowledge the contribution of the family
• Genuineness
• Be a sincere human being to develop trust
• (Rini Hindenlang, 2007)

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In summary

• As Spillers (2007) article discussed, SLPs better
  serve their clients by
• not presuming to fix the problem but considering
  external factors in TX planning
• taking more time to listen in the beginning, but
  saving in the long-term
• supporting and educating clients (and
  caregivers/families) regarding their deficits,
  the more equipped they are to solve their OWN
  problems

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• Questions?

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References

• American Speech-Language Hearing Association
  (ASHA) Technical Report (2002). Evaluating and
  Treating Communication and Cognitive Disorders
  Approaches to Referral and Collaboration for
  Speech-Language Pathology and Clinical
  Neuropsychology, Appendix A.
• American Speech-Language-Hearing Association
  (2005). Knowledge and skills needed by
  speech-language pathologists providing services
  to individuals with cognitive-communication
  disorders. ASHA Supplement, 25. doi
  10.1044/policy.KS2005-00078.
• Blonder, L.X., Langer, S.L., Pettigrew, L.C.,
  Garrity, T.F. (2007). The effects of stroke
  disability on spousal caregivers.
  NeuroRehabilitation, 22, 85-92.
• Boden-Abala, B., Litwak, E., Elkind, M.S.,
  Rundek, T., Sacco, R.L. (2005). Social
  isolation and outcomes post stroke. Neurology,
  64, 1888-1892.
• Hanks, R.A., Rapport, L.J., Vangel, S. (2007).
  Caregiving appraisal after traumatic brain
  injury The effects of functional status, coping
  style, social support and family functioning.
  NeuroRehabilitation, 22, 43-52.
•  Johnson, B.D., Carne, S.C., Tatekawa, L.
  (2004). Communication on both sides of the
  mirror Helping a family cope with traumatic
  brain injury. The Family Journal, 12, 178-183.
• Kruetzer, J.S., Kolakowsky-Hayner, S., Demm,
  S.R., Meade, M.A. (2002). A structured approach
  to family intervention after brain injury.
  Journal of Head Trauma Rehabilitation, 17(4),
  349-367.
• Kreutzer, J.S., Marwitz, J.H., Hsu, N., Williams,
  K., Riddick, A. (2007). Marital stability after
  brain injury An investigation and analysis.
  NeuroRehabilitation, 22(1), 53-59.

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References

• Maciejewski, P.K., Zhang, B., Block, S.D.,
  Prigerson, H.G. (2007). An empirical examination
  of the stage theory of grief. Journal of the
  American Medical Association, 297(7), 716-723.
  doi 10.1001/jama.297.7.716
• McDonald, S., Togher, L., Code, C. (1999).
  Communication Disorders Following Traumatic Brain
  Injury. East Sussex, UK Psychology Press Ltd.
• Rini, D. L. Hindenlang, J. (2007).
  Family-centered practice. In Paul, R. Cascella,
  P.W. (Eds.) Introduction to Clinical Methods in
  Communication Disorders (2nd ed.) (pp.321-337).
  Baltimore, MD Brooks Publishing Co.
• Rosenthal, M., Christenson, B.K., Ross, T.P.
  (1998). Depression following traumatic brain
  injury. Archives of Physical Medicine and
  Rehabilitation, 79, 90-103.
• Spillers, C.S. (2007). An existential framework
  for understanding the counseling needs of
  clients. American Journal of Speech-Language
  Pathology, 16, 191-197.
• Wade, S.L., Taylor, G., Drotar, D., Stancin, T.,
  Yeates, K.O. (1998). Family burden and
  adaptation during the initial year after
  traumatic brain injury in children. Pediatrics,
  102, 110-116.
• Wood, R. L. Yurdakul, L.K. (1997). Change in
  relationship status following traumatic brain
  injury. Brain Injury, 11, 491-501.
• Ylvisaker, M. Feeney, T.J. (1998).
  Collaborative Brain Injury Intervention Positive
  Everyday Routines. San Diego, CA Singular
  Publishing Group, Inc.
• Ylvisaker, M., Hanks, R., Johnson-Green, D.
  (2003). Rehabilitation of children and adults
  with cognitive-communication disorders after
  brain injury. ASHA Supplement, 23, 59-72.
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