The Alzheimer’s Association announced that it has received a $1.34 million dollar grant from the National Institutes of Health (NIH) to strengthen the current framework for psychosocial research examining care for people living with dementia and their care partners.
The grant marks the first time the Alzheimer’s Association has received direct funding from the NIH to be the principal investigator in a research study. UNC School of Social Work distinguished professor Sheryl Zimmerman will serve as the project’s lead researcher. The five-year project, “Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer’s and Dementia (LINC-AD), is aimed at broadening scientific interest and involvement in psychosocial dementia care research while strengthening the research framework that guides these investigations.
“The Alzheimer’s Association is committed to improving care and support for people living with Alzheimer’s and all dementia, as well as their care partners. This research will develop a framework that defines evidence-based measures and encourages use more consistently to accelerate knowledge, understanding and application of care strategies that improve the quality of life,” said Sam Fazio, Ph.D., principal investigator of the study and senior director, quality care and psychosocial research, Alzheimer’s Association. “This is an important area of development and the Alzheimer’s Association welcomes the opportunity to elevate the current state of psychosocial research examining dementia care.”
Working with leading dementia care researchers and care and support experts, LINC-AD will address the following:
- Examine current measures being used in dementia care research.
- Promote the development of new evidence-based measures and tools to bridge existing gaps in research.
- Work to facilitate wider dissemination, adoption and implementation of these measures and care tools in future dementia care research.
- Expand on current measures that often focus only on decline and impairment, to be more comprehensive, including positive measures such as quality of life, resilience and self-efficacy.
“The study offers a unique opportunity to usher in a new direction for psychosocial research examining the care of people living with dementia and their caregivers,” said Joanne Pike, Dr.P.H., chief program officer, Alzheimer’s Association. “While it’s important to study decline and impairment associated with Alzheimer’s and other dementias, it’s vital that we also work to advance new strategies and interventions that can improve the quality of life throughout the disease continuum for both individuals with dementia and their caregivers.”
LINC-AD seeks to fill a research infrastructure gap identified by an Alzheimer’s Association workgroup and noted in the NIH request for application. The intent is that more consistent use of measurement tools that best assess high-quality, person-centered care for people with dementia and their care partners will provide a greater opportunity to compare findings and results across studies, foster greater collaboration and sharpen the focus of current dementia care research.
“This is important and visionary work,” said Zimmerman, co-director of the Program on Aging at the University of North Carolina at Chapel Hill Sheps Center for Health Services Research. “There are nearly 10 million new cases of dementia globally each year. We need to identify and bridge current gaps in research that will address the care needs of these individuals and their caregivers. This project provides a vital opportunity to shape the future direction of research, and ultimately, practice and policy.”
To accomplish its work, the Alzheimer’s Association will engage a multidisciplinary team of dementia care researchers, care and support experts, caregivers and individuals living with dementia. Many of these experts contributed to the Association’s Dementia Care Practice Recommendations released in 2018. The 56 recommendations are aimed at ensuring person-centered care in long-term and community-based settings. LINC-AD will help enhance current measures and care tools to better understand and evaluate how the recommendations impact psychosocial issues of care.
The Alzheimer’s Association will issue calls for research papers that can further inform and advance dementia care research and convene a “think tank” with experts to conduct a comprehensive review and analysis of current dementia care research,. The Alzheimer’s Association will also provide separate funding for at least 12 seed research grants through its International Research Grant Program that will focus on priority areas and gaps identified by the consortium experts. Upon completion of its work, the Alzheimer’s Association will host an online repository for the resulting LINC-AD-recommended measures and tools, and add a psychosocial arm to its Global Alzheimer’s Association Interactive Network (GAAIN), allowing dementia care research data and findings to be shared globally.
The LINC-AD project is supported by the National Institute on Aging of the National Institutes of Health under award number R24AG065185. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.