Care delivered by a trained, unlicensed care team navigator and managed by an advanced-practice nurse, a social worker, and a pharmacist improved multiple facets of care, reported Katherine Possin, PhD, of the University of California San Francisco, and coauthors in JAMA Internal Medicine.
These included measures of patient quality of life, emergency department visits, caregiver depression, and caregiver burden.
“This study demonstrates that effective phone-based dementia care that addresses the needs of the person with dementia and the caregiver can be provided from a hub across large geographic areas, irrespective of the patients’ healthcare system affiliations,” Possin told MedPage Today.
“The Care Ecosystem addresses gaps in our healthcare system around dementia,” she continued. “While the Care Ecosystem won’t cure dementia, it changes the experience of dementia for both the patients and the caregivers, so that they may live as well as possible.”
A model like the Care Ecosystem can expand the reach of the dementia specialist workforce, Possin added. “We work at an academic medical center, where we have a lot of dementia specialists, and we are able to provide high-quality dementia care,” she noted. “But many people living with dementia in this country have limited or no access to dementia specialists because of where they live or because it is hard for them to travel to appointments.”
Earlier data from the Care Ecosystem research group showed that caregiver and dementia health were intertwined: dementia patients were nearly twice as likely to use an emergency department if their caregiver had depression, for example.
“Dementia is a public health challenge, a family disease, and a major strain on our healthcare system,” observed Jennifer Tjia, MD, MSCE, of the University of Massachusetts in Worcester, in an accompanying editorial. “Possin and colleagues have provided evidence that achieving the goals of the triple aim of improving care, health outcomes, and reducing cost can be met by providing dementia training to clinically supervised, unlicensed care team navigators in a scalable way.”
The single-blind, pragmatic Care Ecosystem trial was conducted in California, Nebraska, and Iowa in urban (San Francisco and Omaha) and rural settings. It randomized 780 dyads of dementia patients and caregivers — 512 to the Care Ecosystem intervention and 268 to usual care — from March 2015 to February 2017, tracking each dyad for 1 year.
All eligible patients had a dementia diagnosis from a treating provider and were enrolled in or eligible for Medicare or Medicaid. About half (49.8%) of patients had mild dementia; 28.7% had dementia, and 21.5% had severe dementia. Participants were informed of their randomization result and continued to receive services from other healthcare professionals throughout the study.
In the Care Ecosystem group, patients and caregivers received telephone-based, collaborative care from a team of dementia specialists. The team navigator was an unlicensed, trained guide who served as the primary point of contact for patients and caregivers under nurse supervision. Navigators called dyads approximately monthly; the number of telephone calls averaged 15.3 per dyad over 12 months. The nurse, social worker, and pharmacist were available for situations beyond the navigator’s scope, including safety concerns, behavioral symptoms, or complex legal and financial circumstances.
In the usual care group, participants were offered contact information for the Family Caregiver Alliance, the Alzheimer’s Association, and Area Agencies on Aging. They also were sent quarterly newsletters with general dementia-related articles and word games.
All outcomes were based on caregivers’ answers to telephone survey questions. The primary outcome measure was the Quality of Life in Alzheimer’s Disease (QOL-AD) score, which rated 13 aspects of patient quality of life — such as physical health, energy level, mood, memory, ability to do things for fun, and family relationships — on a four-point scale of poor, fair, good, or excellent.
For the primary outcome, caregivers reported that the Care Ecosystem improved patient quality of life (β 0.53, 95% CI 0.25-1.30; P=0.04). In secondary outcomes, the Care Ecosystem program was shown to do the following:
- Reduce emergency department visits (β −0.14, 95% CI −0.29 to −0.01; P=0.04)
- Decrease caregiver depression (β −1.14, 95% CI −2.15 to −0.13; P=0.03)
- Lessen caregiver burden (β −1.90, 95% CI −3.89 to −0.08; P=0.046)
The study had several limitations, the researchers noted. Dyads were aware of their randomization, and the sample selected likely had fewer unmet needs than patients and caregivers in other populations. Economic outcomes were reported only for 12 months and were based on survey results.
“For many families, supportive dementia care such as the Care Ecosystem can change the experience of living with dementia,” Possin said. Supportive care can reduce stress and burdens on caregivers, she noted: “They are not alone, and can actually plan ahead for challenges that are coming, rather than feeling they are in a constant state of crisis.”
Last Updated September 30, 2019
This project was funded by the Department of Health and Human
Services, Centers for Medicare & Medicaid Services, Global Brain
Health Institute, National Institute on Aging, and National Institute on
Neurological Disorders and Stroke.
The researchers reported relationships with the Centers for Medicare & Medicaid Services, National Institute on Aging, National Institute of Neurological Disorders and Stroke, Global Brain Health Institute, National Center for Advancing Translational Sciences, National Palliative Care Research Center, the John A. Hartford Foundation, the West Foundation, the Patient Centered Outcomes Research Institute, the American Academy of Hospice and Palliative Medicine, and Cornell University, as well as receiving UCSF grants.
The editorialist reported grants from the National Institutes of Health and the Cambia Health Foundation, personal fees from the Donaghue Foundation, and personal fees and nonfinancial support from CVS Health outside the study.
The researchers reported relationships with the Centers for Medicare & Medicaid Services, National Institute on Aging, National Institute of Neurological Disorders and Stroke, Global Brain Health Institute, National Center for Advancing Translational Sciences, National Palliative Care Research Center, the John A. Hartford Foundation, the West Foundation, the Patient Centered Outcomes Research Institute, the American Academy of Hospice and Palliative Medicine, and Cornell University, as well as receiving UCSF grants.
The editorialist reported grants from the National Institutes of Health and the Cambia Health Foundation, personal fees from the Donaghue Foundation, and personal fees and nonfinancial support from CVS Health outside the study.
Primary Source
JAMA Internal Medicine
Secondary Source
JAMA Internal Medicine
Source Reference: Tjia
J “A Telephone-Based Dementia Care Management Intervention — Finding
the Time to Listen” JAMA Intern Med 2019;
DOI:10.1001/jamainternmed.2019.4111.
https://www.medpagetoday.com/neurology/dementia/82480
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