Educational Support Group Program for Bilingual and Spanish-speaking Carepartners and People With Progressive Aphasia
- Conditions
- Progressive AphasiaDementiaAphasiaAlzheimer DiseasePrimary Progressive AphasiaProgressive Aphasia in Alzheimer's Disease
- Interventions
- Behavioral: Psychosocial educational, support group and implementation of strategies
- Registration Number
- NCT06511752
- Lead Sponsor
- University of Texas at Austin
- Brief Summary
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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 120
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
• Beyond the inclusion criteria included above, no additional exclusion criteria apply
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- SINGLE_GROUP
- Arm && Interventions
Group Intervention Description Treatment Condition Psychosocial educational, support group and implementation of strategies Support group meetings and strategy practice
- Primary Outcome Measures
Name Time Method Treatment/Acceptability Survey Baseline, Immediately following treatment, Follow-up at 3-months post-treatment In-house Acceptability and Perception of Change Survey
- Secondary Outcome Measures
Name Time Method Acceptability Measure Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Acceptability scale for healthcare interventions (the Theoretical Framework of Acceptability based questionnaire; Sekhon et al., 2022)
% participants who complete intervention, % sessions completed Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Adherence/receipt of intervention, 0-100, greater better
% completion of homework Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Engagement, 0-100, greater better
Retention Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Number of dropouts, reasons for dropout (related to intervention or not), and overall, retention rate at final assessment and follow-up; 80% is successful at the final post-treatment assessment and 80% is successful at the 2-month follow-up, 0-100, greater better
Aphasia Impact Questionnaire Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Aphasia impact, Higher score indicates poorer quality of life (worse) Range of scores for each question: 0-4 Total 0-84
Mini-Mental State Exam Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Cognitive screener, 0-30, greater better
Quick Aphasia Battery Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Aphasia severity, 0-10, greater better
Stroke and Aphasia Quality of Life Scale- 39 Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Quality of life, greater score is better, 0-195
Progressive Aphasia Severity Scale (PASS) Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Aphasia severity, higher score = worse, 0-3
The Neuropsychiatric Inventory Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Neuropsychiatric status, higher score = worse, 0-36
Clinical Dementia Rating Scale (CDR) Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Dementia Rating, higher score = worse, 0-3
Quality of the Caregiver Patient Relationship (QCPR) Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Quality of life, higher scores is better,14-70
Dementia Quality of Life Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Quality of life, higher score is better, 28-112
Geriatric Depression Scale Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Depression, higher score is worse, 0-15
Dementia Knowledge Assessment Scale Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Dementia Knowledge, higher score is better, 0-60
Center for Epidemiologic Studies Depression Scale Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Depression, higher score is worse, 0- 60
Cuestionario de Salud 36-Item Short Form Survey Instrument Baseline, Immediately following treatment, Follow-up at 3-months post-treatment General health, higher score is better, 0-100
General Anxiety Disorder-7 Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Anxiety, higher score is worse, 0-21
The Duke University Religion Index Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Religion Index
Familism Scale Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Familism Scale, higher score= greater religiosity, 1-15 considering all subscales
Acculturation Rating Scale for Mexican Americans Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Acculturation, higher score is better, 20-124
Adult Carer Quality of Life Questionnaire Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Quality of Life, higher score is better, 0 -105
Brief COPE Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Coping strategies, higher score is better, 0-6
Brief Assessment Scale for Caregivers Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Coping strategies, higher score = worse, -28-28
Zarit Burden Interview Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Burden, higher score = worse, 0-88
Perceived Stress Scale Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Stress level, higher = worse, 0-40
Devereux Adult Resilience Scale Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Resilience
Dementia Management Strategies Scale (Tan et al., 2013) Baseline, Immediately following treatment, Follow-up at 3-months post-treatment Dementia management, higher score= higher frequency of action, subscales 8-55
Trial Locations
- Locations (1)
University of Texas at Austin
🇺🇸Austin, Texas, United States