Intervention to promote communication quality of life for persons with language‐led dementia and their partners: A randomized pilot trial

Project Summary/Abstract Individuals with primary progressive aphasia (PPA) present with inevitable erosion of communicative function caused by neurodegenerative diseases such as Alzheimer’s disease and frontotemporal lobar degeneration. Losing the ability to communicate is a devastating, life-changing process that impacts both individuals living with these disorders and their care partners. There is increasing evidence indicating that restitutive interventions (i.e., those focused on ameliorating core communication impairments) are efficacious in PPA. Recognizing the limitations of current restitutive methodologies, especially for advanced cases and those from ethnoracially and linguistically diverse backgrounds, the proposed research pioneers a comprehensive, multicomponent progressive aphasia (Multi-PA) treatment protocol. This novel approach is tailored not only to individuals facing the multifaceted communication challenges of speech/language-led dementias but also extends education and training to their care partners. The project leverages the success of our previous NIH-funded work, which confirmed the benefits of restitutive speech-language telerehabilitation for PPA. It aims to evolve these methods by integrating compensatory and partner-focused strategies, addressing the broader needs of patients across varying stages of disease severity and clinical presentation. Such a holistic approach is particularly vital as up to 40% of individuals with PPA present as mixed or unclassifiable, highlighting the need for a more adaptable intervention model. In a significant shift from traditional methodologies, this randomized pilot and feasibility study emphasizes the value of patient-reported outcome measures (PROMs), alongside performance-based outcomes, in Latinos and non-Hispanic/Latinos. This approach aims to capture a more authentic and comprehensive picture of patients' quality of life and overall well-being, factors often overshadowed by conventional, performance-focused metrics. Over a two-year span, the study will execute a Stage 1b randomized pilot/feasibility telerehabilitation trial involving 30 participants with PPA and 30 care partners, with half of the sample composed of Latinos/Hispanics. This strategy underscores the project's commitment to including perspectives of individuals from diverse ethnoracial and linguistic backgrounds in the early stages of intervention development. In summary, this project seeks to 1) evaluate the feasibility and acceptability of the Multi-PA telerehabilitation model for participants and their care partners and 2) evaluate suitability of outcome measures and preliminary patterns of treatment response to inform a future efficacy trial for Multi-PA. This innovative project stands to significantly influence care paradigms for Alzheimer’s disease and related dementias (ADRD), advocating for a person-centered approach that acknowledges the diversity and complexity of individuals living with speech/language-led dementia. Aligned with the NIA’s strategic priorities, the project holds promise for reshaping intervention strategies and enhancing communication and quality of life for individuals from diverse ethnoracial and linguistic backgrounds with ADRD and their care partners.