Expand Scope of Advance Care Planning Project
(WASHINGTON) The Project Talk Trial, a national study of two advance care planning (ACP) interventions in underserved communities, will soon expand its reach to include individuals with mild cognitive impairment (MCI) and those at risk for Alzheimer’s disease and its related dementias (ADRD). Hospice Foundation of America (HFA) has partnered with researchers at Penn State College of Medicine and University of Kentucky on the five-year, randomized controlled trial funded by the National Institutes of Health (NIH).
“The ultimate goal of this supplemental research is to find the best way to encourage advance care planning in a vulnerable population that has an urgent need for it,” said Dr. Lauren Jodi Van Scoy, professor of medicine, humanities and public health sciences and lead researcher for Project Talk Trial. “We need to find out how to help them be involved in their medical decision-making before significant incapacity occurs.”
Using the end-of-life conversation game “Hello” as the ACP intervention, researchers will select eight to 12 U.S. locations for the study, bringing together those with MCI and/or at risk for ADRD with their care partners, who are often their surrogate decision makers, to play the game in a non-threatening forum and talk together about their goals and values related to medical care.
ACP involves patients considering the medical interventions they would or would not want if they were facing a medical emergency, such as being placed on a ventilator for breathing support or being resuscitated when their heart stops.
Alzheimer’s disease, a progressive brain disorder that impairs memory, thinking, language, functioning and behavior, is the sixth leading cause of death in the United States and the most common form of dementia. According to the Centers for Disease Control and Prevention (CDC), 5.8 million Americans were living with Alzheimer’s disease in 2020, and by 2060, CDC estimates 14 million Americans will have Alzheimer’s. Prevalence of the disease is greater in the African American and Hispanic populations than in the white population, CDC data show.
Like the parent Project Talk Trial, the additional research for those with MCI or at risk for ADRD is also funded by NIH and focuses on underserved communities (including African Americans, Hispanic individuals, or those living in rural areas) who are at risk for low quality end-of-life care as a result of a lack of advance care planning and other health disparities. The ongoing parent trial excludes individuals with MCI or at risk for ADRD due to concerns related to interventional appropriateness; the aim of this additional research, according to HFA, is to learn how best to adapt the intervention to those with MCI or at risk for ADRD.
“We hope those who participate in this innovative research project will not only benefit but also enjoy the activity. Participants will be helping to advance science by helping researchers understand the best approach to advance care planning for this population,” said Amy Tucci, president of HFA and a co-investigator.
Two additional collaborators on the study, Dr. Hillary Lum, associate professor of medicine-geriatrics at the University of Colorado Anschutz Medical Campus, and Daniel George, associate professor of humanities and public health sciences at Penn State College of Medicine, will join the Project Talk Trial team for the study expansion. Dr. George works with patients with ADRD and recently co-authored a book about Alzheimer’s disease and dementia.
Organizations that are interested in learning more about being part of the project should email [email protected].
