Educational Support Group Program for Bilingual and Spanish-speaking Carepartners and People With Progressive Aphasia

Educational Support Group Program for Carepartners of Bilingual and Spanish-speaking Persons With Progressive Forms of Aphasia and for Persons With Progressive Forms of Aphasia

The current study aims to examine the benefits of an education/support group program for individuals with progressive aphasia (caused by various etiologies, diagnoses) and their carepartners. The current study utilizes pre-, post-treatment, and follow-up assessments to measure effects of a psychoeducational support group and an implementation/communication skills training phase on measures of psychosocial function, communicative effectiveness and speech/language function. Analysis of study-specific surveys and semi-structured interviews will provide qualitative data regarding outcomes. Before beginning the education and support group, focus groups will be run in order to set priorities for the themes to be included in the education program. Participants will join via tele-based means if preferred and these participants may reside in the United States, or internationally including Mexico and Spain.

Two educational/support group routes will be offered:

1. Progressive aphasia (PA) educational/support group or
2. Caregiver educational support group with an implementation phase (including their partner with PA).

The caregiver educational support group path will be delivered in two phases, whereas the PA educational support group path will only consist of the first phase. The first phase of the caregiver educational support group will focus on the educational support group and the second phase will consist of implementation and practice of strategies with feedback provided by the clinician.

The educational/support groups (Routes 1 and 2) will include opportunities for discussion of issues related to language-led dementia or progressive aphasia (e.g., coping with changes in cognition and language, use of strategies for effective communication) and education regarding the disorder provided by relevant experts (e.g., speech-language pathologists, licensed professional counselors), separately for carepartners and individuals with progressive aphasia.

The implementation phase (Route 2, only) will allow for practice of strategies and skills learned in the first phase.

The total amount of time participants will be involved in the study will be 9 months, inclusive of follow-up.

Phase 1. Timeline for the support group portion of the study: Participants will complete pre-treatment measures during a period of 1-2 weeks prior to their first meeting. After four months of twice monthly meetings, post-treatment measures will be completed within 1-2 weeks of treatment completion. Follow-up evaluation will take place at 3-months post-treatment.

Phase 2. Timeline for the implementation/dyad training portion of the study: Post-treatment assessment from Phase 1 will serve as pre-treatment assessment for Phase 2. Treatment sessions will be held once weekly for 4 weeks, and post-treatment assessment will be completed within 1-2 weeks of phase 2 treatment completion. Follow-up evaluation will take place at 3-months post-treatment.

Inclusion Criteria:

All participants must:

• speak Spanish and/or English (although participants may speak other languages in addition to Spanish and/or English)
• identify as Hispanic and/or Latinx,
• or their spouse/family member with PA identifies as Hispanic and/or Latinx
• see and hear well enough to participate
• have access to a computer or mobile device with video capability
• have an internet connection

Additional inclusion criteria for PA/ language-led dementia support group participants:

• Individuals with PA:
• Has a diagnosis of PA, or language-led dementia, and aphasia is one of the primary causes of difficulty with activities of daily living
• Aware of language difficulties and willing to discuss them
• Able to actively engage in group discussion and complete activities with minimal support
• Able to regularly attend meetings
• Willing to follow the rules of the support group for interacting with others respectfully

Additional inclusion criteria for care partner support group plus implementation phase participants:

• Individuals with PA:
• Diagnosis of aphasia or dementia that is progressive in nature, and aphasia is one of the primary causes of difficulty with activities of daily living
• Have some ability to communicate and understand communication in order to participate in training sessions
• Are functionally able to engage in training sessions (e.g., able to maintain some attention, minimal challenging behavior that would cause disruption)
• Have a care partner who also consents to participating in the project
• Care partners:
• Self-identification as a caregiver of an individual with a diagnosis of PA or language-led dementia
• Willing to discuss caregiving for individuals with PA/ language-led dementia
• Able to regularly attend meetings
• Willing to follow the rules of the support group for interacting with others respectfully

Exclusion Criteria:

• Beyond the inclusion criteria included above, no additional exclusion criteria apply