1. The Dementia Care Ecosystem: Preliminary Findings about Care Navigation for Dementia
Patients and Their Caregivers in Rural Nebraska and Iowa.
Amy M. Clark,1
Alissa Bernstein,2
S. Bonasera,1
T. Braley,1
K.L. Possin, 2
and A. Bowhay,1
1 Department of Geriatrics, University of Nebraska Medical Center / 2 Memory and Aging Center, University of California, San Francisco
METHODS
RESULTS
IMPLICATIONS AND FUTURE DIRECTIONS
BACKGROUND
• Access to healthcare professionals who provide ongoing supportive services and
education to family caregivers is scarce in rural areas.
• The Dementia Care Ecosystem (DCE) is a telephone and web-based Dementia
Care program that augments primary care with dementia-focused care.
• The intervention includes trained Care Team Navigators (CTNs) who work with
patients and their caregivers, known as the dyad, and provide referrals to
community resources, educate caregivers on behavior management, and are
available to problem solve issues as they arise.
The research reported on this poster was supported by Grant Number 1C1MS331346-01-11 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The investigators retained full independence in the conduct of this
research. The contents of this publication are solely the responsibility of the authors and do not necessarily represent official views of the U.S. Department of Health and Human Services or any of its agencies.
OBJECTIVES
• To report qualitative research on the barriers that facilitators of
quality dementia care navigation encounter as well as scope of
practice issues.
• To report preliminary quantitative research findings regarding
change in caregiver confidence
Qualitative Research
Qualitative Research Participants:
• 9 Care Team Navigators working in the Dementia Care Ecosystem, 3 in Nebraska
and 6 in the San Francisco Bay Area. Ages 22-41.
Qualitative Research Procedures:
• Qualitative Interviews: Interviews were conducted with all CTNs in the Dementia
Care Ecosystem to identify barriers and strategies when working with rural dyads.
Interviews were conducted with both groups of CTNs in order to assess
commonalities in work and identify specific issues and navigation approaches
when working with rural dyads. Results focus only on rural care navigation and
issues.
• Direct Observation: Observations were conducted at 16 Care Navigator debriefings
to identify key issues that arose during rural care navigation.
• Analysis of CTN Records: Reports in the online workflow management tool were
reviewed for themes.
Qualitative Data Analysis:
• Interview transcriptions, observation notes, and dashboard entries were analyzed
through the coding program Dedoose by two members of the research team using
Grounded Theory methodology.
Quantitative Research
Quantitative Research Participants:
22 rural participants in the study, based on Rural-Urban Commuting Area Codes
(RUCAs), 11 in navigated care and 11 in survey of care.
Quantitative Data and Analysis Procedures: 6 month survey data was analyzed using
descriptive analysis.
Qualitative Findings
Participants
Care Team Navigators reflected on their experiences providing care for rural dyads and identified population characteristics and common barriers to care
that shaped navigation strategies
Analysis
Barriers to care for rural dyads
• Lack of resources due to social and physical isolation
“There was nobody who was willing to come out that far to his house. He felt physically and emotionally isolated because of having a loved one who is
really sick.”
“He was basically doing everything on his own, washing her, bathing her, caring for her, spending 24 hours a day with her.”
Population characteristics
• Privacy
“They are more private. Some of them are farmers and ranchers and are more secluded. They are used to being on their own.”
• Independence and resistance to asking for help
“They want to do everything by themselves. They don’t want to ask for help. The caregiver does not want to burden family and friends.”
Strategies for providing effective care navigation in rural areas
• Learning the social and physical context of rural participants
“I listen to them and find out information about what’s around to get a geographical picture. I ask them about their neighborhood, how close people
are to them, questions to find out where they live. I look at the population to give myself a better picture.”
• Relationship-building
“You just really have to focus on building that relationship, because trust is a big element in that. With a rural participant it’s almost waiting it out in
terms of just building that relationship and trust first.”
“Because they are so out there and a lot of them don’t have a lot of support, getting our phone calls is something that they look forward to. It is
someone who they can tell everything to, and vent, whether it’s about their stresses or just about the patient.”
•Locating relevant and accessible resources and educational materials to create individualized care navigation approaches
“We identified a component of long term care insurance and found grants that provide ways that a family, friend, or neighbor can be paid as a
caregiver when the dyad doesn’t have access to other paid caregivers in their area. They have their neighbors come over and they pay them to help
provide care.”
“We have to be more creative. If I recommend a support group and they have to drive two hours, it’s not very realistic, so we hook them up with
online or phone support groups.
Quantitative Findings
Participants
Preliminary survey data comparing rural participant responses at baseline and at 6 months suggests that Care Navigation in rural areas has led
to increased caregiver confidence and decreased caregiver uncertainty.
Analysis
• Qualitative results demonstrate that to most effectively serve dementia patients and their caregivers in rural areas, a navigated care model must address and be adaptive to the specific needs of this demographic in regards to their sociocultural characteristics and
their limited access to resources and services due to physical and social isolation. In order to better tailor the intervention to rural dementia patients, members of the Care Ecosystem clinical team of nurses, social workers, and pharmacists are refining care navigator
role responsibilities and escalation protocols for working with rural dyads.
• Quantitative results demonstrate that Care Navigation in rural areas has the ability to increase caregiver confidence and certainty in their work, which is often done without the benefit of the resources available to urban caregivers. As enrollment continues to grow, a
more robust analysis is anticipated.
• Future analysis will assess differential outcomes between rural and urban enrollees in the Care Ecosystem study, as well as satisfaction with the intervention amongst urban and rural enrollees.
Contact: amym.clark@unmc.edu, alissa.bernstein@ucsf.edu