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

• Published in: Dementia (London, England) England), 2019-05, Vol.18 (4), p.1310-1327
• Main Authors: Morhardt, Darby J, O’Hara, Mary C, Zachrich, Kristine, Wieneke, Christina, Rogalski, Emily J
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Aged; Aphasia, Primary Progressive - psychology; Aphasia, Primary Progressive - therapy; Female; Humans; Male; Patient Education as Topic; Self-Help Groups
• ISSN: 1471-3012; 1741-2684
• DOI: 10.1177/1471301217699675

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.