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| Name | Class |
|---|---|
| The Association for Frontotemporal Degeneration | UNKNOWN |
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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:
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Treatment Condition | Experimental | Support group meetings and strategy practice |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Psychosocial educational, support group and implementation of strategies | Behavioral | Psychosocial educational, support group and implementation of strategies |
|
| Measure | Description | Time Frame |
|---|---|---|
| Treatment/Acceptability Survey | In-house Acceptability and Perception of Change Survey | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Measure | Description | Time Frame |
|---|---|---|
| Acceptability Measure | Acceptability scale for healthcare interventions (the Theoretical Framework of Acceptability based questionnaire; Sekhon et al., 2022) | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| % participants who complete intervention, % sessions completed |
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Inclusion Criteria:
All participants must:
Additional inclusion criteria for PA/ language-led dementia support group participants:
Additional inclusion criteria for care partner support group plus implementation phase participants:
Exclusion Criteria:
• Beyond the inclusion criteria included above, no additional exclusion criteria apply
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Stephanie M Grasso, PhD | Contact | 6268648957 | smgrasso@austin.utexas.edu |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Texas at Austin | Recruiting | Austin | Texas | 78702 | United States |
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| Label | URL |
|---|---|
| Multilingual Lab Website | View source |
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Behavioral intervention- support group
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Adherence/receipt of intervention, 0-100, greater better |
| Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| % completion of homework | Engagement, 0-100, greater better | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Retention | 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 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Aphasia Impact Questionnaire | Aphasia impact, Higher score indicates poorer quality of life (worse) Range of scores for each question: 0-4 Total 0-84 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Mini-Mental State Exam | Cognitive screener, 0-30, greater better | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Quick Aphasia Battery | Aphasia severity, 0-10, greater better | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Stroke and Aphasia Quality of Life Scale- 39 | Quality of life, greater score is better, 0-195 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Progressive Aphasia Severity Scale (PASS) | Aphasia severity, higher score = worse, 0-3 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| The Neuropsychiatric Inventory | Neuropsychiatric status, higher score = worse, 0-36 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Clinical Dementia Rating Scale (CDR) | Dementia Rating, higher score = worse, 0-3 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Quality of the Caregiver Patient Relationship (QCPR) | Quality of life, higher scores is better,14-70 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Dementia Quality of Life | Quality of life, higher score is better, 28-112 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Geriatric Depression Scale | Depression, higher score is worse, 0-15 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Dementia Knowledge Assessment Scale | Dementia Knowledge, higher score is better, 0-60 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Center for Epidemiologic Studies Depression Scale | Depression, higher score is worse, 0- 60 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Cuestionario de Salud 36-Item Short Form Survey Instrument | General health, higher score is better, 0-100 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| General Anxiety Disorder-7 | Anxiety, higher score is worse, 0-21 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| The Duke University Religion Index | Religion Index | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Familism Scale | Familism Scale, higher score= greater religiosity, 1-15 considering all subscales | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Acculturation Rating Scale for Mexican Americans | Acculturation, higher score is better, 20-124 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Adult Carer Quality of Life Questionnaire | Quality of Life, higher score is better, 0 -105 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Brief COPE | Coping strategies, higher score is better, 0-6 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Brief Assessment Scale for Caregivers | Coping strategies, higher score = worse, -28-28 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Zarit Burden Interview | Burden, higher score = worse, 0-88 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Perceived Stress Scale | Stress level, higher = worse, 0-40 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Devereux Adult Resilience Scale | Resilience | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| Dementia Management Strategies Scale (Tan et al., 2013) | Dementia management, higher score= higher frequency of action, subscales 8-55 | Baseline, Immediately following treatment, Follow-up at 3-months post-treatment |
| ID | Term |
|---|---|
| D000544 | Alzheimer Disease |
| D003704 | Dementia |
| D018888 | Aphasia, Primary Progressive |
| D001037 | Aphasia |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D024801 | Tauopathies |
| D019636 | Neurodegenerative Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D013064 | Speech Disorders |
| D007806 | Language Disorders |
| D003147 | Communication Disorders |
| D019954 | Neurobehavioral Manifestations |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
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| ID | Term |
|---|---|
| D012657 | Self-Help Groups |
| ID | Term |
|---|---|
| D009938 | Organizations |
| D004472 | Health Care Economics and Organizations |
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