Among the recommendations of the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers is the development of methods for measuring person-centered outcomes. This goal aligns with that of the Alzheimer's Association, which recently released their 2018 Dementia Care Practice Recommendations, organized around a nine-domain model of dementia care. While developing the recommendations, critical limitations were noted in the measures and care tools available to guide practice and evaluate outcomes. Specifically, existing measures do not adequately reflect the voices of persons with dementia and their caregivers; focus on biomedical rather than psychosocial issues; are deficit- as opposed to strengths-based; insufficiently consider the system in which care is provided; and overlook the importance of the context (e.g., stage of disease) in which they are to be used. These goals for better measurement constitute a paradigmatic shift in the field that is long overdue. Even with better measures, there is also a dearth of tools to help providers know whether they are fully following evidence-based practices. Absent such tools, quality improvement is hampered. In response, we propose to create an international research network, entitled Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia (LINC-AD). The core of the consortium will be the current Dementia Care Practice Recommendations working group members (the Research Advisors), and a second group composed of persons with dementia, caregivers, and professional providers (the Care Advisors). The LINC-AD consortium will undertake a series of high impact activities designed to usher in the next phase of psychosocial research in care for persons with Alzheimer's disease and related disorders. Using the nine domain model as a framework, LINC-AD will broaden scientific interest and involvement in psychosocial dementia research while completing the following aims: (1) critique existing outcome measures and care tools and identify gaps; (2) promote the development of new outcome measures and care tools where needed; and (3) facilitate the dissemination, adoption, implementation, and sustained use of existing and new outcome measures and care tools. Collaboration with the Alzheimer's Association brings unique and substantial resources to this proposal. The Association will work with our Research and Care Advisors, host webinars and meetings, issue calls for papers, and fund a minimum of twelve seed grants responsive to the project aims. They will also host a permanent and sustainable online repository for the resulting LINC-AD recommended measures and tools, and add a psychosocial arm to their existing state-of-the-art online shareable database (Global Alzheimer's Association Interactive Network; GAAIN). The results of the LINC-AD will facilitate a larger and more connected scientific community to conduct novel analyses and facilitate interdisciplinary efforts to better understand and address the needs of persons living with dementia and their care providers.
To provide the highest quality care for persons with dementia and their care partners requires accurate assessment of psychosocial processes and outcomes of care, but a high quality set of measures and tools to do so are lacking. We propose to create an international consortium of researchers and stakeholders (persons with dementia, care partners, and care providers) that will review existing measures, identify and address gaps, and disseminate these results via permanent online repositories of recommended measures and shareable data. Through the LINC-AD (Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia), the Alzheimer's Association will provide leadership, seed grant funding, online hosting, and other resources to this critical effort.
