The goal of this clinical trial is to develop a dementia care intervention for persons receiving home-based primary care (HBPC) and living with dementia (PLWD) and their caregivers, and test the feasibility of implementing the intervention in HBPC practices to ultimately improve outcomes of PLWD and their caregivers. The main aims are to: * Develop and refine HBPC Dementia Care Quality at Home * Establish feasibility (primary outcome), acceptability, and fidelity of HBPC Dementia Care Quality at Home through an open-pilot trial involving two HBPC practices. Trained clinicians and staff at two HBPC practices will implement the intervention Relevant stakeholders (caregivers of PLWD, and HBPC clinicians and staff) will participate in qualitative focus groups to provide feedback on the intervention.
The overarching goal of this project is to develop a dementia care intervention for PLWD and their caregivers, Dementia Care Quality at Home, and test the feasibility of implementing the intervention in two HBPC practices to ultimately improve outcomes of PLWD and their caregivers. The investigators will evaluate the feasibility, acceptability, and fidelity in implementing HBPC Dementia Care Quality at Home in two practices for persons living with dementia and their caregivers through an open pilot. Hypothesis: HBPC Dementia Care Quality at Home will meet benchmarks of feasibility, acceptability, and fidelity by the HBPC practices implementing it and by caregivers of PLWD who experience the intervention. The investigators will assess feasibility of caregivers of PLWD to engage with the intervention, the acceptability of the intervention to caregivers, and the impact of the intervention on caregiver well-being by surveying caregivers at the conclusion of the pilot. In addition, the investigators will assess feasibility, acceptability, and fidelity of the intervention in the practices.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
50
Each of the two HBPC practices will identify at least two trained Dementia Care Quality at Home Champions who will be trained in the intervention comprised of 1) a standardized assessment tool to assess PLWD and caregiver needs; 2) six modules created to optimize the well-being of the PLWD and their caregiver; and 3) regular team-based review of persons participating in the program to address care challenges and a team-based case conference approach to solve these challenges.
Queens Medical Center
Honolulu, Hawaii, United States
Virginia Commonwealth University
Richmond, Virginia, United States
Feasibility for the Caregiver to Engage With and Complete Baseline Assessments.
The percentage of identified caregivers who complete baseline assessments.
Time frame: Baseline
Feasibility for the Caregiver to Access Educational Materials and Community Resources.
Percent of caregivers will report using 1 or more materials provided by the practice.
Time frame: Post-intervention (6 months)
Feasibility for the Practice of Identifying Potential Patients/Caregivers
Ability of practice to generate list of their patients living with dementia using a questionnaire to the practice
Time frame: Baseline
Feasibility for the Practice of Assessing Eligible Patient/Caregiver Dyads.
Ability of practice to identify eligible patient/caregiver dyads (e.g., caregiver experiencing burden or distress).
Time frame: Baseline
Feasibility for the Practice to Use Baseline Assessments.
Percent of practice personnel who conduct assessments that rate assessments as feasible to use
Time frame: Post-intervention (6 months)
Feasibility for the Practice to Complete Baseline Assessments
The percent of audited assessments that are completed.
Time frame: Post-intervention (6 months)
Feasibility for the Practice of Recruiting Patient/Caregiver Dyads
Percentage of eligible dyads who enroll.
Time frame: Pre-intervention
Patient Quality of Life
Quality of Life in Alzheimer's Disease. The QoL-AD is comprised of 13 items (physical health, energy, mood, living situation, memory, family, marriage, friends, self as a whole, ability to do chores, ability to do things for fun, money and life as a whole). Response options include 1(poor), 2(fair), 3(good) and 4 (excellent), for a total score of 13-52, with higher scores indicating better QoL.
Time frame: Pre-Intervention (baseline) and post-intervention (6 months)
Heard and Understood
A one-item measure of caregivers who report that they felt heard and understood by the practice.
Time frame: Post Intervention (6 months)
Caregivers - Net Promoter Score of Intervention
The single question - "How likely are you to recommend X to a friend \[or colleague\]?" is rated from 0 - Not at all likely to 10 - Extremely likely.
Time frame: Post-intervention (6 months)
Feasibility for the Practice to Use Care Modules.
The percentage that rates modules as feasible to use. The percentage of practice personnel who complete the modules that rate the modules as feasible to use
Time frame: Post-intervention (6 months)
Feasibility for the Practice to Complete Care Modules
Percent of audited modules that are completed.
Time frame: Post Intervention (6-months)
Feasibility for the Practice of Clinicians to Engage With the Tele-video Case Conference.
% of case conferences conducted with at least one staff member present from each site
Time frame: Post-intervention (6 months)
Acceptability of the Intervention to Caregivers to Participate in the Intervention.
Percent of caregivers invited to participate who agree to participate in the intervention.
Time frame: Pre-intervention (baseline)
Feasibility for the Practice of Percent of Racial and Ethnic Minorities Recruited.
Percentage of eligible dyads who enroll who are racial and ethnic minorities.
Time frame: Pre-intervention (baseline)
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