Community Integration of People with Aphasia

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Community Integration of People with Aphasia

• Sabbatical Semester Report
• Sandra Glista
• Spring 2003

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What is aphasia?

• Aphasia
• acquired language disorder
• usually of sudden onset (strokes or brain
  attack)
• affects ability to communicate
• Symptoms
• difficulty expressing oneself while speaking
• understanding of speech, reading and writing also
  impaired
• Between one and four million citizens have
  aphasia
• 80,000 new cases per year

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How does aphasia affect life?

• Whole life change
• Some never talk again
• Some can never express ideas
• Leads to feelings of being trapped in ones mind
• Most never return to work
• Many never can resume family relationships or
  enjoyable activities
• Isolation, frustration, worthlessness predominate

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How do family members feel?

• Share social stigma of communication disability
• Suffer from barriers to social interaction,
  self-fulfilling actitivities, and interpersonal
  relationships
• Role change to caregivers rather than wife,
  husband, daughter, son
• Isolation for both
• Friends desert couple

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Traditional Aphasia Therapy

• Many well established models for language therapy
  developed over past 30 years
• Positive outcomes of communication treatment are
  well established
• Therapy available in all settings and regions

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Problems with traditional therapy

• Poor generalization to real life contexts
• Integration into community activities lacking
• Family treatment and participation limited

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Policy and economic limitations

• Health care policy changes limit direct therapy
  (managed care)
• Federal insurance reductions (Medicare dollar
  limits)

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Group therapy as a solution

• Group treatment efficacious and effective
• Positive impact on real life activities
• Cost effective methods
• peer led groups
• volunteer facilitated groups
• linkages through technology

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Group Social Interventionist Model

• Context based therapy
• catalog ordering
• book reading
• joke telling
• movie viewing
• Improve socialization, family relationships,
  confidence, affect, activity level

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Aphasia Therapy at WMUVanRiper Language Speech
and Hearing Clinic

• Aphasia group since 1973

• services to people with chronic aphasia and
  family members
• Mary Ida Hunt, founder
• cited as one of the first to offer group support
  to clients and families

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Needs for PWA

• Programs that lead to
• full community participation,
• integration,
• psychosocial adjustment,
• family counseling,
• and caregiver support for people with aphasia and
  their family members,
• especially for those living in rural regions with
  low income.

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Sabbatical Goals

• Improve didactic and clinical education about
• people with aphasia
• Expand group programming for PWA
• and families
• Facilitate community integration opportunities
• with social agencies
• Develop regional solutions for support of PWA
• in rural areas
• Plan future Van Riper Lecture Series

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Aphasia Center of CaliforniaOakland, California

• Roberta Elman, Founder
• Mission is to enhance communication skills and
  maximize psychosocial well-being for those
  affected by aphasia.
• Located in Oakland Senior Center on Lake Merritt

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• Aphasia Treatment Program (ATP)
• Integral part of clinical education program
• Led by Jan Avent, Ph.D.
• Fund raising created by group members
• Donations
• Clinic Fees
• Available during academic year - 3 quarters

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• Aphasia Treatment Program
• Audrey Holland, Ph.D., founder
• Pelagie Beeson, Ph.D., current director
• NIH Center for the Study of Neurogenic
  Communication Disorders

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• Conversation groups
• Family group
• Book Club
• Research Program

• Client led groups
• Individual therapies
• http//w3.arizona.edu/aphasia

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March 31-April 4, 2003

• The Stroke Center is a transdisciplinary training
  center for rehabilitation of stroke that utilizes
  professionals, graduate students-in-training and
  volunteers to deliver services to individuals
  with aphasia. The Stroke Center provides a
  multiskilling experience for healthcare students
  in training through collaboration of two training
  institutions -- Woman's University and The
  University of Texas Southwestern Medical Center,
  Dallas. Disciplines involved include speech
  language pathology, physical therapy,
  occupational therapy, nursing and social work.
  The Center is part of the Department of
  Communication Sciences and Disorders and is
  based at TWU's Dallas Parkland campus.

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May 2 - 30, 2003

• Connect Centre, London
• National Charity
• Vision is a world where communication disability
  is not a barrier to opportunity and fulfillment
• http//www.uk.connect.org
• http//www.aphasiahelp.uk.org

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• Connect is a national charity. Our vision is a
• world where communication disability is not a
• barrier to opportunity and fulfillment.
• We work with people with communication
• disability to find new ways of talking and
  new
• ways of living.
• Connect believes the best way to support
• people living with communication disability
  is
• through an integrated programme of therapy,
• education and research.
• At Connect we feel it is important for people
  to
• have the possibility of long-term therapy and
• support. We develop therapies which are
• practical, creative and long term. The
  Connect
• team has experience, confidence and lots of
• ideas.

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Living with Aphasia

• Jon Lyon
• Wisconsin
• Individual coaching to couples living with
  aphasia
• originator of back to the drawing board
• contributer of life participation approaches to
  aphasia

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Questions we must ask ourselves

• What societal changes must occur for more
  integration of PWA?
• Are there differences in how we accomplish these
  goals in urban versus rural regions?

• What do people with aphasia want to do with their
  lives after stroke?
• Have we asked them?
• Does our treatment help them accomplish those
  objectives?
• If so, what are we doing that works?
• If not, what do we have to change?
• What systems need to change? How? Cost?

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Restoring Communication

• Gesturing
• Drawing
• Talking
• Commenting
• Reading
• Writing
• Pointing
• Using whatever works

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Improving quality of life

• Meaningfulness
• Activity
• Connections
• Linkages
• Usefulness
• Purpose
• Contributions

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Building social relationships

• Contributing to family roles
• Sharing responsibility
• Developing friendships
• Sustaining partnerships
• Connecting to others

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Restoring meaningfulness to life

• Reestablishing identity
• Contributing to the community
• Validating self-worth
• Consolidating values
• Living with purpose

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