Dementia patients’ quality of life improved over 12 months with
team-based telephone and Internet support, a survey of dementia
caregivers in the Care Ecosystem randomized trial showed.
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 effects of the Care Ecosystem on ambulance use and
hospitalization were not significant, and the number needed to treat to
prevent a single emergency department visit was 5. Comparing hospital
and emergency services in the intervention group against expected use
based on usual care data, the researchers calculated that the Care
Ecosystem prevented 120 emergency department visits, 16 ambulance use
events, and 13 hospitalizations over 12 months, providing an average
cost savings of $600 per patient in these three services.
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.
Primary Source
JAMA Internal Medicine
