Among the estimated 11 million care partners who provide care to persons with Alzheimer's Disease (AD) and AD-Related Dementias (ADRD), many are tasked with the management of dysphagia (swallowing difficulty) and they experience higher levels of emotional burden, isolation, depression, and hopelessness than their counterparts who do not manage dysphagia. Care partners have the potential to optimize outcomes for people living with AD/ADRD but only if they are well-supported. Unfortunately, existing interventions focused on dysphagia management do not address the range of unique needs of AD/ADRD care partners. To address this important problem - and in response to Funding Opportunity Announcement PAS-22-197 - we propose to co-design and create Dementia IDEAs (Improving Dysphagia Education and Actions), an evidence-based intervention for dysphagia management with digital training content and behavioral nudges designed for AD/ADRD care partners. In this Phase I project, we will follow the National Institutes of Health (NIH) Stage Model for Behavioral Intervention Development and we will employ a user-centered design approach to address the first two stages (Stage 0 and Stage 1A) to assess needs and co-design the Dementia IDEAs prototype. First, in Stage 0 (Needs Assessment), we will assess the needs of AD/ADRD care partners who manage dysphagia for people living with AD/ADRD. Next, in Stage 1A (Participatory Co-design), we will co-design the Dementia IDEAs intervention that will provide digital content and behavioral nudges to support dysphagia management collaboratively with care partners and dysphagia care experts. Our goal is to commercialize the intervention to help care partners anticipate, avert, and respond to challenges during the course of AD/ADRD and enhance health and well-being. In particular, we aim to influence AD/ADRD care partners' knowledge, skills, behavior, and habits to prevent or mitigate negative outcomes experienced with dysphagia management, to reduce burden, and to improve care for persons living with AD/ADRD. This Phase 1 project will set the stage for a Phase II clinical trial to test the effect of Dementia IDEAs on health outcomes for care partners and persons living with AD/ADRD.
Public Health Relevance Statement: NARRATIVE Among the estimated 11 million care partners who provide care to persons with Alzheimer's Disease (AD) and AD-Related Dementias (ADRD), many are tasked with the management of dysphagia (swallowing difficulty) and they experience higher levels of emotional burden, isolation, depression, and hopelessness than their counterparts who do not manage dysphagia. In this Phase I project, we will employ two stages of user-centered design to determine the unique needs of AD/ADRD care partners who manage dysphagia and design an evidence-based intervention for dysphagia management with digital training content and behavioral nudges. Our goal is to commercialize the intervention to help care partners anticipate, avert, and respond to challenges faced with dysphagia management during the course of AD/ADRD and to enhance health and well-being. Terms:
