This project aims to culturally adapt the SHARE program for African-Americans in early-moderate stage dementia and their care partner. Upon completion of the adaptation, a pilot randomized-control trial wil be confucted to compare the adaptaed SHARE program versus usual care.
Aim 1: Review SHARE for Dementia materials with an Advisory Committee (AC; 6-10 African Americans with lived experience and experts) to identify distinct needs of African American care dyads and culturally adapt SHARE using this input. Deliverables: Develop SHARE V1 Culturally tailored V1 SHARE Counselor Manual, V1 SHARE Guide for Families, and V1 SHARE Counselor training Aim 2: Conduct focus groups with African American care dyads (n=2 groups; n=10 dyads total, or until saturation) and community service provider staff (n= 2 groups; n=10, or until saturation) to identify strengths and limitations of the V1 SHARE materials, procedures, and protocols. Deliverables: SHARE for African Americans (Version 2;V2); Culturally tailored V2 SHARE Counselor Manual, V2 SHARE Guide for Families, and V2 SHARE Counselor training Aim 3: Train SHARE counselors (n=20) to implement V2 of SHARE. Aim 4: Examine: a) the acceptability and feasibility and; 2) preliminary efficacy of the culturally adapted V2 of SHARE in a fully powered trial with 120 African American care dyads.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
TREATMENT
Masking
NONE
Enrollment
120
The intervention group will receive the adapted SHARE Dyadic program, consisting of five, 60-90-minute curriculum-guided sessions with a SHARE Counselor, plus one optional family session.
Control group participants will receive a treatment as usual equivalent: a single, standardized educational and resource session with a packet of information.
Benjamin Rose
Cleveland, Ohio, United States
RECRUITINGSession length
SHARE counselors will report length of each session, and we will determine the number of sessions conducted were within 60-90 minutes - the prescribed treatment protocol.
Time frame: After each session; within 10 weeks of baseline.
Attendance
SHARE counselors will report the number of sessions attended out of 6 treatment sessions offered.
Time frame: After each session; within 10 weeks of baseline.
Attrition
We will assess the number of caregivers and PLWD retained at follow-up
Time frame: Follow up (T2); within 12 weeks of baseline.
Satisfaction with session
Caregivers and PLWD will be asked about their satisfaction with SHARE regarding the: 1) experience; 2) counselor; 3) materials; 4) sessions; 5) postintervention relationship functioning.
Time frame: After each session; within 10 weeks of baseline.
Treatment process
Caregivers and PLWD will be asked to agree or disagree with statements about SHARE Counselor, understanding of choices, knowledge of dementia, connection to care partner.
Time frame: Follow up (T2); within 12-weeks of baseline.
Overall satisfaction
Caregivers and PLWD will be asked to rate their satisfaction with care values and preferences discussions, spacing between sessions, importance of knowledge gained, etc.
Time frame: Follow up (T2); within 12 weeks of baseline.
Utility
Caregivers and PLWD will be asked to rate the usefulness of materials and information shared, skill of counselor, commitment to care plan.
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Time frame: Follow up (T2); within 12 weeks of baseline.
Feasibility of SHARE
Caregivers and PLWD will be asked about the appropriateness of time spent in session and number of sessions.
Time frame: Follow up (T2); within 12 weeks of baseline.
Acceptability
Caregivers and PLWD will be asked about the main benefits and drawbacks of SHARE.
Time frame: Follow up (T2); within 12 weeks of baseline.
Goals
Caregivers and PLWD will be asked to indicate their goals of participating in SHARE, such as: Dementia education, communication skills, knowledge of resources, building a network of support, etc.
Time frame: Follow up (T2); within 12 weeks of baseline.
Dyadic Relationship Scale (DRS) (Clinical Outcomes (Distal Effects; Secondary))
The Dyadic Relationship Scale consists of 28 items that asks care partners and PLWD how often of the time (15-items), and how often in the past month (13-items), they think a statement applies to their relationship. Responses are (0-3) ranging from "All or nearly all of the time" to "None or almost none of the time". Ranges are a total of 0-84, with higher scores indicating more positive dyadic relationship.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Personal and Instrumental Activities of Daily Living (PIADL)
The Personal and Instrument Activities of Daily Living is a an 18-item measure that asks care partners to rate the PLWD ability to perform daily activities. Responses are (1) Does by self/ Needs no help, (2) Needs reminders/ Needs a little help, (3) Needs help most of the time, and (4) Needs help all the time (unable to do activity). Range is from 18-72, with lower scores indicating less ability of PLWD to perform daily activities independently.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Emotional-Intimacy Disruptive Behavior Scale (EIDBS)
The Emotional-Intimacy Disruptive Behavior Scale is a an 8-item measure to asks care givers and PLWD to assess the extent care partners with hold or distort symptoms or feelings to protect their care partner. Response options are (1) None of the time, (2) Some of the time, (3) Much of the time, (4) Most or all of the time. Range is from 8-32, with higher scores indicating higher distortions of feelings
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Dementia Quality of Life +/- Affect
Caregivers and PLWD will be asked six positive/six negative affect indicators.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Center for Epidemiological Studies Depression Scale (CES-D)
Caregivers and PLWD will be asked to respond to a 20-item measure of how often in past week they experience depressive symptoms associated with depression, such as restless sleep, poor appetite, and feeling lonely. Response options range from 0 to 3 for each item (0 = Rarely or None of the Time, 1 = Some or Little of the Time, 2 = Moderately or Much of the time, 3 = Most or Almost All the Time). Scores range from 0 to 60, with high scores indicating greater depressive symptoms.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Stress in Providing Care
Caregivers will be asked open-ended questions.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Leisure & Healthy Behaviors
Caregivers and PLWD will complete an inventory of enjoyable activities and self-care practices.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.
Quality of Life - AD (QoL-AD)
Caregivers and PLWD will respond to a 13-item questionnaire designed to provide a report of the quality of life for the PLWD participant. Response options are from 1 (Poor) - (4) excellent for each item. Range from 13-52, higher scores indicate higher quality of life.
Time frame: Baseline (T1), Follow up (T2); within 12 weeks of baseline.