A key part of patient and family engagement involves listening to patients and keeping their perspective in mind. This article provides a chance for patients and family caregivers to tell their stories.
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| http://dx.doi.org/10.18043/ncm.76.3.165 | DOI Listing |
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Dementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
Mayo Clinic, Rochester, MN, USA.
Background: Discussion surrounding the nomenclature of the "nonfluent/agrammatic" spectrum of progressive speech-language disorders has largely focused on the clinical-pathological and neuroimaging correlations, with some attention paid to the prognostication afforded by differentiating clinical phenotypes. Progressive apraxia of speech (AOS), with or without agrammatic aphasia, is generally associated with an underlying tauopathy; however, patients have offered a unique perspective on the importance of distinguishing between difficulties with speech and language that extends beyond pathological specificity. This study aimed to provide insight into the experience of patients with primary progressive AOS (PPAOS), with particular attention to their diagnostic journey.
View Article and Find Full Text PDFDementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
University of Pittsburgh, Pittsburgh, PA, USA.
Background: As the landscape of ADRD diagnoses evolves to include biomarker testing, there is a pressing need to understand the unique experiences, challenges, and support needs of families undergoing evaluations of cognitive decline, particularly in a manner that prioritizes cultural considerations from voices historically underrepresented in ADRD research. The current study aims to understand the AD biomarker disclosure journey of persons from underrepresented groups with the goal of informing culturally responsive approaches to the care of patients and their families navigating the complexities of ADRD diagnoses.
Method: Virtual focus groups are being conducted over a secure video conferencing platform, with a trained facilitator guiding the discussion.
Dementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
Acumen Pharmaceuticals, Charlottesville, VA, USA.
Background: Incorporation of the patient voice into drug development has been recognized as fundamental; recent legislation has addressed the importance of collecting patient experience data. Qualitative patient interviews conducted in tandem with clinical trials, often in later phases, are among the most common means of eliciting these data. To assess aspects of patient experience earlier in development, we conducted semi-structured qualitative interviews following participation in the phase 1 ACU-001 (INTERCEPT-AD) trial, a study evaluating the safety and tolerability of the Aβ oligomer-targeting monoclonal antibody ACU193, among a subset of participants with mild cognitive impairment (MCI) or mild Alzheimer's disease (AD) and their study partners.
View Article and Find Full Text PDFDementia Care Practice.
Alzheimers Dement
December 2024
Hong Kong Social Worker Association, Hong Kong, Hong Kong.
Listening to the voices of people with dementia and understanding their perception of the surrounding world is one of the keys to providing person-centred care in daily practice. The care not only focuses on the specific knowledge and skills but also the proper caring attitude towards dementia. Stigma is still severe in Hong Kong, and the implementation of dementia-inclusive language is not practical due to the lack of education in this aspect.
View Article and Find Full Text PDFArtificial intelligence empowered voice generation for amyotrophic lateral sclerosis patients.
Sci Rep
January 2025
NeMO Lab, ASST GOM Niguarda Cà Granda Hospital, Milan, Italy.
Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that can result in a progressive loss of speech due to bulbar dysfunction, which can have significant negative impact on the patient's mental well-being. Alternative Augmentative Communication (AAC) strategies based on synthetic voices have been shown to assist patients in maintaining communication and improving their Quality of Life (QoL). However, such synthetic voices are often perceived as impersonal and fail to capture the unique voice and identity of the patient.
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