Stakeholder Engagement to Inform and Refine an Existing Dementia Care Model in Home-Based Primary Care: The Co-Creation of Dementia Care Quality at Home

Abstract

Millions of Americans have Alzheimer’s Disease and Related Dementias (ADRD). While people with ADRD can live well, many become homebound and are not able to access office-based primary care. Existing dementia care interventions improve patient and caregiver outcomes but are not tailored to homebound people living with dementia, their caregivers, or home-based primary care (HBPC) practices and clinicians who care for them. This study aimed to adapt existing dementia care models to the HBPC setting through qualitative focus groups with caregivers of homebound people living with dementia (n = 24) and HBPC clinicians (n = 22). Using the FRAME framework for intervention adaptation, and the Framework qualitative analysis method, our findings include that caregivers identified behavior management, decision-making, and safety as key areas where they needed more help from their HBPC practice. We co-created the Dementia Care Quality at Home (DCQH) intervention with HBPC clinicians to address this gap by adapting an existing dementia care model to the home and HBPC. Evaluation will determine if intervention refinement based on this feedback enhances the feasibility and acceptability of the DCQH.