Research Network for Alzheimer's Disease Home and Community Based Services

项目总结

PROJECT SUMMARY Home- and community-based services (HCBS) for dementia are essential and growing yet understudied. HCBS are a type of long-term services and supports that assist with everyday functioning such as eating, dressing, bathing, and meal preparation. These services facilitate community living, as opposed to institutional living, in line with most consumers’ preferences. Relative to the expeditious movement towards more HCBS, the consideration of affordability, access, delivery, quality, and outcomes of dementia HCBS are woefully behind. Even more general measures of HCBS (not relating to dementia) do not consider the unique needs of persons with dementia or their caregivers, and are fragmented by setting, service, and payer. Additionally, it is nearly impossible to compare measures across U.S. states or even HCBS populations within a given state due to a lack of coherent, harmonized measures. Relevant quality domains include structural (e.g., provider capacity), process (e.g., receipt of adequate services), and outcome (e.g., quality of life) measures. These measures must be developed with considerations for differential measurement issues for populations with dementia including quality of life and family caregiver metrics that are unique to dementia. The research field is mired by these challenges and is further exacerbated by the lack of centralized data. To expedite evidence-based measures of HCBS dementia outcomes that are equity-focused, our Research Network seeks to coordinate activities, grow a diverse bench bench, and increase the productivity of policy-oriented research to improve the financing, access, delivery, and quality monitoring of dementia HCBS. We will bring together researchers who work on all forms and settings of HCBS and include both private pay (e.g., out of pocket) and public benefit (Medicaid) services. Our Network activities are equity- driven, because of their content focus (ensuring equitable HCBS access, quality, and outcomes) and their focus on building a larger, more diverse bench of dementia HCBS researchers. Bench-building efforts will span the continuum of engagement of underrepresented scientists and institutions, from ensuring reach and recruitment, promoting the funding, research, and publication success, and facilitating the broader dissemination, recognition, and long-term policy impacts. The ultimate goals of our research network are to (1) foster formal communications and knowledge sharing to quickly advance innovative dementia HCBS research; (2) grow and diversify the bench of dementia HCBS researchers; (3) generate data tools to facilitate examination of population and temporal changes in structure, process, and outcome measures of dementia HCBS; (4) facilitate greater translation of research into dementia HCBS policy changes; and (4) develop a Network infrastructure and products through a diversity and equity lens. To achieve these goals, we will develop and maintain a website and distribution channels; hold quarterly Network meetings, monthly Working Groups, annual writing camps, and annual intensive Data Workshops; centralize information about data sources on HCBS for PwD within a new Dementia HCBS Data Center; and hold translation and dissemination training seminars.