Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners

Darby J. Morhardt*, Mary C. O’Hara, Kristine Zachrich, Christina Wieneke, Emily J. Rogalski

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

Abstract

Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer’s dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility. Development and structure of pilot and formal intervention groups are described. Thematic analysis of both groups included the following themes: (1) coping with limitations and language decline; (2) dealing with increased dependency; (3) expressing resilience and making adaptations; (4) experiencing stigma (pilot group) and confronting stigma (intervention group); (5) experiencing self-confidence; and (6) feeling a sense of belonging. The knowledge gained from this process may be useful in designing programs for individuals with aphasic dementia and preserved insight. Evidence-based data from supportive interventions for persons with primary progressive aphasia and their care-partners are needed.

Original languageEnglish (US)
Pages (from-to)1310-1327
Number of pages18
JournalDementia
Volume18
Issue number4
DOIs
StatePublished - May 1 2019

Keywords

  • Alzheimer’s disease
  • dementia
  • frontotemporal dementia
  • nonpharmacological intervention
  • primary progressive aphasia
  • psycho-education
  • psychosocial support
  • quality of life

ASJC Scopus subject areas

  • Sociology and Political Science
  • Social Sciences(all)

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