Educating the Families of Individuals with Cognitive Impairment
Rebecca Epperly, M.S. CCC‐SLP and Emily Guill, B.S. Session Objectives
1.
Discuss potential barriers to caregiver education as it relates to an individual’s 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.
“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)
Social support = Health
• Strong social support networks have been associated with healthy aging, higher functional status, reduction in MI’s among women, reduced cardiovascular mortality, lower cancer and stroke incidence rates, and overall decreased mortality.
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.
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
Psychosocial problems, cont’d
…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
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.
So it’s 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
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
Why educate families?
• To strengthen social supports through knowledge
• To produce better outcome measures
• To promote patient safety
• JCAHO makes us do it!
Current challenges to family education in healthcare
1. Time
2. Caregiver readiness
3. Allied health professionals have limited training in education and counseling
Challenge #1
The time factor
Time is a factor
• Shorter LOS/ Billing quotas
• Staffing/shortages
• Increased documentation demands • Family availability
Challenge #2
Caregiver Readiness
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.
Stage Theory of Grief (cont’d)
• 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…
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
Caregiver readiness
Factors 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 caregiver’s expectations
Challenge #3 No one ever showed me how to educate
Principles of Family Centered Care
Rini & Hindenlang, 2007
Any circumstance that affects one family member affects other members and the family as a whole
The family has a right to establish its own priorities
• Acknowledge them with respect even if you disagree The family must be accepted as the experts concerning their family member
The clinician must collaborate with the family to obtain assessment information & develop relevant goals
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
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
When a family report differs greatly from clinical observation… it is the clinician’s responsibility to explore situations for their own knowledge and the family’s, in which the client’s performance is perceived as different
Let’s 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?
Embedding Education in Therapy
To educate, lead by example
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”
An example of quantifying cognition
Attention / Working Memory
planning
flexibility
new learning
awareness
memory
organization
social judgment
communication
safety
goal setting
self monitoring
problem solving
information processing
ATTENTION
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)
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
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
Traditional
Paradigm
Restorative exercises –
improving cognitive function
If
deficits
remain
Compensatory training – adapting to the
presence of a cognitive deficit
Contextualized paradigm
Structure/ Function
Context oriented
Activity/ Participation
Adapted from Ylvisaker et al., 2003
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)
Cognitive scaffolding
Pragmatics
Recall
Organization
Problem
solving
Attention
Cognitive scaffolding, cont’d
• Let your cueing and environmental supports be a “visible” scaffold for caregiver education
• Assess but don’t 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
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)
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
Questions?
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.
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.