About LINC-AD

Background

In 2017, the National Institutes of Health hosted its first National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers to generate recommendations that could improve treatment. Among them was the development of better methods for measuring person-centered outcomes.

This recommendation paired well with the efforts of the Alzheimer’s Association, which was preparing to release its 2018 Dementia Care Practice Recommendations, organized around a nine-domain model of dementia care. For each domain, a group of experts reviewed existing literature to develop evidence-based recommendations. Once recommendations were established, the experts shifted their focus to critiquing existing tools and outcome measures in each domain.

Recognizing the significance of the group’s work and its alignment with the 2017 summit recommendation, the Alzheimer’s Association proposed to the National Institutes of Health a five-year interdisciplinary consortium composed of those experts as well as individuals with dementia, caregivers and care providers.

Objectives

With support from the Alzheimer’s Association and funding from National Institutes of Health grant 1R24AG065185, LINC-AD will focus on three major objectives to usher in the next phase of psychosocial research in Alzheimer’s disease and related disorders, ultimately leading to improved care and outcomes.

1. Critique existing outcome measures and care tools within each of the nine domains of the Dementia Care Practice Recommendations to (a) establish criteria for evaluating measures and tools; (b) identify measurement priority areas; and (c) review existing measures and tools and identify gaps.
2. Promote the development of new outcome measures and care tools to fill identified gaps, including with “calls for papers” for inclusion in a special issue of Alzheimer's & Dementia: Translational Research & Clinical Interventions and with seed grants within the Alzheimer's Association International Research Grant Program
3. Facilitate the dissemination, adoption, implementation and sustained use of existing and new outcome measures and care tools through a permanent online repository of recommended outcome measures and care tools; a corresponding data-sharing database in the Global Alzheimer’s Association Interactive Network (GAAIN); a compilation of special issue papers; and a corresponding issue in the Journal of Post-Acute and Long-Term Care Medicine (JAMDA).

As a growing consortium, LINC-AD includes researchers, persons living with dementia, family care partners, and long-term and community-based providers.