Details

Autor(en) / Beteiligte

• Morhardt, D.J.
• Khayum, R.
• Kathryn, B.
• Marie, S.
• Rogalski, E.

Titel

ON YOUR SIDE: ONLINE SUPPORT AND EDUCATION FOR INDIVIDUALS WITH PRIMARY PROGRESSIVE APHASIA

Ist Teil von

• Innovation in aging, 2017-07, Vol.1 (suppl_1), p.1203-1203

Ort / Verlag

US: Oxford University Press

Erscheinungsjahr

2017

Link zum Volltext

Quelle

EZB Electronic Journals Library

Beschreibungen/Notizen

• Primary Progressive Aphasia (PPA) is a clinical syndrome characterized by progressive loss of language affecting other cognitive domains over time. There are no approved drug treatments for PPA; however, psychoeducational support programs have been shown to improve quality of life and well-being for persons with neurodegenerative cognitive decline and their families. Persons with PPA and their families rarely have the opportunity to benefit from this type of intervention, largely due to difficulty recruiting enough members with PPA in one geographic region. A pilot online/videoconference psychoeducational support program was launched in Spring/Summer 2016 specifically for persons living with PPA to circumvent geographic limitations and improve healthcare access. Five couple dyads from the United States and Canada were recruited into the study including persons with PPA mild (n=4) to moderate (n=1) expressive and receptive language impairments and their spouse care-partners. Dyads met by videoconference for 8-weekly 2-hour sessions. Sessions included dyad education on PPA, communication strategies, psychosocial interventions followed by separate consecutive support groups for diagnosed persons and care-partners. Pre-post questionnaires measured confidence for communication abilities, life participation, mood, well-being and perceived stress. Pre-post interviews with dyads and care-partners were documented and all videoconference sessions were audio-recorded. Audio recordings and field notes were reviewed for emerging themes through inductive content analysis. Results suggest that an online videoconference psychoeducational support program for persons with mild PPA and their care partners is feasible and represents a novel solution to connect individuals with rare diseases such as PPA. Participants appreciated the opportunity to meet each other however, the variability among symptoms, age and disease knowledge impacted satisfaction, particularly for care partners. Further research is needed to identify the ideal group composition and content.