NEW YORK (October 29, 2018)—The National Institute on Aging, part of the National Institutes of Health, has awarded researchers at NYU Rory Meyers College of Nursing a $6.1 million grant to study a program designed to bring effective care to people with dementia receiving hospice care. The two-phase, five-year grant will fund the first large-scale clinical trial of people with dementia in hospice and their caregivers.
Sixteen percent of patients in hospice have dementia as their primary diagnosis, making it the second-most common hospice diagnosis after cancer. People with dementia often have behavioral and psychological symptoms—including agitation, depression and sleep disturbances—that affect both the quality of life of the people with dementia and their caregivers. Unfortunately, end-of-life care providers often feel unprepared to manage the challenging symptoms of this complex set of diseases.
To address these challenges, the Hartford Institute for Geriatric Nursing at NYU Rory Meyers College of Nursing created Aliviado Dementia Care, a program to implement effective care in the community for people with dementia and their caregivers. Developed based on a decade of research on dementia symptom assessment and management, Aliviado—which means “relief” in Portuguese—was initially created for use in home health care and has been modified for use in hospice. The hospice-specific program includes training for hospice clinicians, with a focus on education and support for caregivers, as well as a comprehensive quality improvement program for hospice agencies.
“Despite high rates of dementia in hospice care, little research has been performed on how hospices can best help people with dementia and their caregivers to ensure as high a quality of life as possible during the vulnerable period at the end of life. Our evidence-based program is designed to help people with dementia who are near the end of their lives, as well as their families, to improve their quality of life and cope with this devastating illness,” said Ab Brody, PhD, RN, FAAN, FPCN, associate director of the Hartford Institute for Geriatric Nursing, associate professor at NYU Meyers, and founder of Aliviado Health.
“Through further research, we aim to improve the quality of dementia care, support family caregivers, and empower hospice clinicians to provide effective and compassionate care for people with dementia,” said Brody, who is the project’s principal investigator.
The grant from the National Institute on Aging will fund two phases of research. The first phase will be a year-long process to further tailor Aliviado Dementia Care for the hospice setting, establish the infrastructure to study the program, and pilot the program in two hospice agencies
The second phase, which will last four years, will roll out a randomized clinical trial in 25 hospice agencies across the country, including more than 20 hospice agencies that are part of the National Partnership for Hospice Innovation.
“We are thrilled to be a part of this critically important study to improve care for those with Alzheimer’s and related dementias and their families at the end-of-life. The dementia population is growing rapidly and we are committed to ensuring they have access to the highest-quality hospice care, and look forward to partnering on this trial to work toward achieving that vision,” said Tom Koutsoumpas, president and CEO of the National Partnership for Hospice Innovation, a nationwide collaborative of over 60 non-profit, community-based hospice and palliative care organizations.
The researchers will study the use of Aliviado Dementia Care with approximately 750 advanced dementia patients living at home. They will compare the use of antipsychotic and pain medications before and after Aliviado is implemented, as well as measure satisfaction among family caregivers. The researchers will also evaluate whether introducing the program changes the type and hours of hospice care provided to patients or the rates of patients permanently moving into nursing homes.
As the study is being completed, Aliviado Health will begin rolling out the evidence-based Aliviado Dementia Care for hospice to additional interested hospice agencies.
In addition to the member agencies of the National Partnership for Hospice Innovation, other hospice agency partners include Vitas Hospice and Providence TrinityCare Hospice in California.
The study includes a comprehensive interdisciplinary team of co-investigators and advisors including Tara Cortes and Bei Wu of the Hartford Institute for Geriatric Nursing and NYU Meyers; Keith Goldfeld of NYU School of Medicine; Susan Mitchell of Hebrew Senior Life; Melissa Aldridge and Carolyn Zhu of the Icahn School of Medicine at Mount Sinai; Jean Kutner of the University of Colorado, Denver; Mollie Gurian of the National Partnership for Hospice Innovation; and Joseph Shega of Vitas Hospice.
The research is funded under grant number 1R61AG061904-01.
The Hartford Institute for Geriatric Nursing is the geriatric arm of the NYU Rory Meyers College of Nursing. Aliviado Health is a dissemination arm of the Hartford Institute for Geriatric Nursing, focusing on assisting community-based organizations to implement high-quality, evidence-based care for older adults with serious illness. Visit hign.org for more information.
