Abstract
BACKGROUND: Primary progressive aphasia (PPA) is a language-prominent dementia that fundamentally impacts the lives of not only the person with the diagnosis, but also their family members. While assuming a caregiving role, care partners are vulnerable to negative health and psychosocial consequences of their own. Support groups are one way to meet the needs of care partners, providing opportunities for individuals with common experiences to socialize, obtain knowledge about disorders, and learn coping strategies. Given that PPA is rare and that in-person support groups are sparse in the United States, there is a need for alternative meeting modalities, to overcome the limitations imposed by relative scarcity of potential participants, lack of appropriately-trained clinical professionals, and the logistical demands faced by overburdened care providers. Telehealth-based support groups provide care partners with opportunities to connect virtually with other care partners; however, research regarding their feasibility and benefit is limited. AIMS: This pilot study investigated whether a telehealth-based support group for care partners of persons with PPA is feasible and yields benefits in psychosocial functioning. METHODS & PROCEDURES: Ten care partners of persons with PPA (7 females; 3 males) participated in a group intervention comprising psychoeducation about relevant topics, followed by group discussion. Meetings were held twice monthly for four months via teleconference. All participants completed pre- and post-intervention measures to examine support group satisfaction as well as psychosocial functioning, including quality of life, coping, mood, and caregiving perception. OUTCOMES & RESULTS: Consistent group member participation across study phases supports the feasibility of this intervention model. Quantitative results from paired-samples permutation tests indicate no significant changes from pre- to post-intervention on psychometrically validated psychosocial measures. Qualitatively, results from an in-house Likert-type survey indicate positive outcomes in quality of life, social support, caregiving skills, and psychoeducation. Relatedly, post-intervention themes derived from a thematic analysis of written survey responses included: Enhancing knowledge about PPA, feeling connected and mutually supported, and desire for more time together. CONCLUSIONS: Consistent with existing literature evaluating virtually-delivered care partner support groups in dementia and other acquired medical conditions, findings from this study support the feasibility and benefit of telehealth-based support groups for care partners of persons with PPA.