Support Group Program for Progressive Aphasia

Overseen By Stephanie M Grasso, PhD

Age: 18+

Sex: Any

Trial Phase: Phase < 1

Sponsor: University of Texas at Austin

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Approved in 3 Jurisdictions This treatment is already approved in other countries

Compensation: Varies

Number of Visits: Unknown

120 Participants Needed

Trial Summary

What is the purpose of this trial?

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.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment Educational Support Group Program, Psychoeducational Support Group, Communication Skills Training Program for Progressive Aphasia?

Research shows that group communication treatments for people with primary progressive aphasia (PPA) and their partners can improve communication skills and confidence. Participants in these programs reported better knowledge about PPA, increased use of different communication methods, and improved participation in daily activities. ^{1 2 3 4 5}

Is the Support Group Program for Progressive Aphasia safe for humans?

The research suggests that educational and support group programs for people with aphasia, including those with primary progressive aphasia (PPA), are generally safe. Participants in these programs have reported positive experiences, such as improved communication skills and increased confidence, without any mention of adverse effects. ^{1 2 5 6 7}

How is the Educational Support Group Program treatment different from other treatments for progressive aphasia?

The Educational Support Group Program is unique because it combines support, education, and communication skills training for both individuals with progressive aphasia and their care partners, focusing on coping strategies, resilience, and reducing stigma, which are not typically addressed in standard speech therapy. ^{1 2 5 8 9}

Eligibility Criteria

This trial is for bilingual and Spanish-speaking individuals with progressive aphasia or related conditions, such as Frontotemporal Dementia, and their carepartners. Participants can join from the U.S., Mexico, Spain, and may participate through tele-based means if preferred.

Inclusion Criteria

Participants must identify as Hispanic and/or Latinx, or have a spouse/family member with PA who identifies as Hispanic and/or Latinx

Participants must have access to a computer or mobile device with video capability and an internet connection

I have PA or language-led dementia with aphasia and can participate in group discussions.

Exclusion Criteria

No additional exclusion criteria apply

Timeline

Screening

Participants are screened for eligibility to participate in the trial

1-2 weeks

Educational/Support Group

Participants engage in educational and support group sessions focusing on coping with changes in cognition and language, and effective communication strategies.

4 months

Twice monthly meetings

Implementation/Dyad Training

Caregivers practice strategies and skills learned in the educational support group with feedback from clinicians.

4 weeks

Once weekly sessions

Follow-up

Participants are monitored for psychosocial function, communicative effectiveness, and speech/language function after treatment.

3 months

Treatment Details

Interventions

• Educational Support Group Program

Trial Overview The study tests an educational support group program that includes psychoeducational support and communication skills training. It measures changes in psychosocial function, communicative effectiveness, and speech/language function before, after treatment, and at follow-up.

Participant Groups

Group I: Treatment Condition Experimental Treatment 1 Intervention

Support group meetings and strategy practice

Educational Support Group Program is already approved in United States for the following indications:

Approved in United States as Educational Support Group Program for:

• Progressive Aphasia

Who Is Running the Clinical Trial?

University of Texas at Austin

Lead Sponsor

Trials

387

Recruited

86,100+

The Association for Frontotemporal Degeneration

Collaborator

Trials

2

Recruited

180+

Findings from Research

Incorporating communication-centered counseling and care partner training into the treatment of primary progressive aphasia (PPA) can help address the negative psychosocial effects experienced by individuals, such as social isolation and depression.

Current research on counseling and care partner training for PPA is limited, but existing evidence suggests these approaches are beneficial and should be further explored to enhance treatment outcomes and support for both patients and their care partners.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Counseling and Care Partner Training in Primary Progressive Aphasia. Schaffer, KM., Henry, ML.[2022]

A study involving 25 participants (12 individuals with primary progressive aphasia and 13 caregivers) showed that attending an education and support session significantly improved caregivers' knowledge about PPA and coping strategies.

Follow-up interviews revealed that caregivers felt less isolated and more supported, highlighting the importance of these sessions as a valuable part of care for individuals with PPA.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Primary Progressive Aphasia Education and Support Groups: A Clinical Evaluation. Taylor-Rubin, C., Azizi, L., Croot, K., et al.[2020]

A pilot study introduced the first structured group intervention program specifically for individuals with primary progressive aphasia (PPA) and their caregivers, consisting of language activities, communication strategies, and counseling over 10 weeks.

Participants showed significant improvements in communication quality and coping skills compared to a control group, highlighting the need for tailored interventions for the PPA population and their support systems.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Group intervention for individuals with primary progressive aphasia and their spouses: Who comes first? Jokel, R., Meltzer, J., D R, J., et al.[2018]

The pilot study of the Better Conversations with PPA (BCPPA) program involved 18 participants with primary progressive aphasia (PPA) and their communication partners, showing that the intervention was well-received and had a high treatment fidelity of 87.2%.

Results indicated that BCPPA led to positive changes in conversation behaviors and communication goals, suggesting it is a promising intervention for improving communication in individuals with PPA, paving the way for a larger randomized controlled trial.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Results from a randomised controlled pilot study of the Better Conversations with Primary Progressive Aphasia (BCPPA) communication partner training program for people with PPA and their communication partners. Volkmer, A., Walton, H., Swinburn, K., et al.[2023]

A group treatment model for individuals with primary progressive aphasia (PPA) was developed, incorporating strategies from augmentative communication and aphasia rehabilitation, and was delivered over 6 weeks to enhance communication skills.

Participants reported significant improvements in their understanding of PPA, increased use of multimodal communication, and greater confidence in daily activities, indicating that group training is an effective approach for supporting individuals with this condition.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Group Communication Treatment for Individuals with PPA and Their Partners. Mooney, A., Beale, N., Fried-Oken, M.[2019]

A feasibility study showed that an education program involving people with aphasia as educators significantly improved nursing assistant students' understanding of aphasia and communication strategies.

The program not only enhanced the students' knowledge but also provided psychosocial benefits to participants with aphasia, indicating its potential for broader application in healthcare training.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Teaching nursing assistant students about aphasia and communication. Welsh, JD., Szabo, GB.[2018]

A short educational program about aphasia (SEPA) was developed for family caregivers, but the study with only four participants showed no significant group differences in burden or quality of life after the intervention.

Despite the lack of significant results, individual trends indicated that all participants experienced some improvement, suggesting that SEPA may have potential benefits that warrant further investigation with larger sample sizes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Effects of a short educational program about aphasia (SEPA) on the burden and quality of life of family caregivers of people with aphasia. Magnus, BH., Dias, RF., Beber, BC.[2019]

A new psycho-educational program was developed to support individuals with primary progressive aphasia and their care-partners, focusing on education, activities, and emotional support.

Thematic analysis revealed key areas of impact, including coping with language decline, increased dependency, resilience, stigma, self-confidence, and a sense of belonging, highlighting the program's potential benefits for participants.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners. Morhardt, DJ., O'Hara, MC., Zachrich, K., et al.[2021]

The study developed a comprehensive training program called 'Better Conversations with primary progressive aphasia' for speech and language therapists, which includes seven online modules and a manual for communication partner training, based on extensive stakeholder consultation and co-production.

Key components of the training were identified, such as the use of video feedback and understanding the timing of interventions, which were informed by focus groups with individuals affected by primary progressive aphasia and their families, ensuring the program is tailored to their needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Using the Medical Research Council framework and public involvement in the development of a communication partner training intervention for people with primary progressive aphasia (PPA): Better Conversations with PPA. Volkmer, A., Spector, A., Swinburn, K., et al.[2021]

References

1. United States pubmed.ncbi.nlm.nih.gov

Counseling and Care Partner Training in Primary Progressive Aphasia. [2022]

2. United States pubmed.ncbi.nlm.nih.gov

Primary Progressive Aphasia Education and Support Groups: A Clinical Evaluation. [2020]

3. United States pubmed.ncbi.nlm.nih.gov

Group intervention for individuals with primary progressive aphasia and their spouses: Who comes first? [2018]

4. England pubmed.ncbi.nlm.nih.gov

Results from a randomised controlled pilot study of the Better Conversations with Primary Progressive Aphasia (BCPPA) communication partner training program for people with PPA and their communication partners. [2023]

5. United States pubmed.ncbi.nlm.nih.gov

Group Communication Treatment for Individuals with PPA and Their Partners. [2019]

6. United States pubmed.ncbi.nlm.nih.gov

Teaching nursing assistant students about aphasia and communication. [2018]

7. Brazil pubmed.ncbi.nlm.nih.gov

Effects of a short educational program about aphasia (SEPA) on the burden and quality of life of family caregivers of people with aphasia. [2019]

8. England pubmed.ncbi.nlm.nih.gov

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners. [2021]

9. England pubmed.ncbi.nlm.nih.gov

Using the Medical Research Council framework and public involvement in the development of a communication partner training intervention for people with primary progressive aphasia (PPA): Better Conversations with PPA. [2021]