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 language | English (US) |
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Pages (from-to) | 1310-1327 |
Number of pages | 18 |
Journal | Dementia |
Volume | 18 |
Issue number | 4 |
DOIs | |
State | Published - 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
- General Social Sciences
- Sociology and Political Science