Dementia Caregivers
Conditions
Keywords
Latino caregivers
Brief summary
The overall goal of this study is to culturally adapt and test the effectiveness of Learning Skills Together (LST) in improving self-efficacy among Latino family caregivers. To address this overall goal, the study team propose the following aims: i) culturally adapt the LST intervention for Latino caregivers using a community-engaged approach; and ii) examine the effect of the LST intervention on Latino caregiver self-efficacy, depression, and well-being using a randomized wait-list control group.
Detailed description
The study team will use a randomized wait-list control group design with blinded outcomes assessment to examine the effectiveness of LST-LC on caregiver confidence and self-efficacy in performing complex care tasks. This design has the advantage of making enrollment more feasible as participants may find the intervention highly desirable and will eventually receive it. Yet, the design provides a randomized comparison with a non-intervention control group. Participants will be individually randomized 1:1 to an immediate intervention group (IG) and a wait-list (delayed) control group (WLC).
Interventions
BEHAVIORALLST-LC Education
Testing the LST-LC intervention with cultural adaptations integrated through Stage 2 (Adaptation Design). There are 9 modules. Session 1, we describe the principles underlying the program (safety, hygiene, dignity, comfort, and independence), discuss self-care, and introduce a vignette of caring for a person with dementia, designed to generate conversation around the caregiving role. Other modules focus on 1) behavioral and 2) communication challenges in the context of dementia; 3) home safety, transfers, and adaptable medical equipment; 4) managing nutrition needs; 5) swallowing challenges; 6) supporting oral hygiene; 7) dealing with incontinence, including preventing and recognizing urinary tract infections; 8) medication management and 9) managing comorbidities including assessing and managing pain
Sponsors
Retirement Research Foundation
The University of Texas Health Science Center at San Antonio
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
SINGLE (Outcomes Assessor)
Masking description
The research assistant will collect follow-up data and will be blinded to group assignment. Caregivers will be asked not to discuss whether they were in a group program prior to follow-up data collection with the research assistant. The statistician will also be blinded, with group assignment designated using a binary variable in anonymous study data. In order to conduct study activities, other team members will not be blinded.
Intervention model description
A randomized wait-list control group design with blinded outcomes assessment to examine the effectiveness of LST-LC on caregiver confidence and self-efficacy in performing complex care tasks. This design has the advantage of making enrollment more feasible as participants may find the intervention highly desirable and will eventually receive it. Yet, the design provides a randomized comparison with a non-intervention control group. Participants will be individually randomized 1:1 to an immediate intervention group (IG) and a wait-list (delayed) control group (WLC).
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
1. a family member to an individual living with AD/ADRD (Alzheimers Disease/Alzheimers Disease and related dementias) who has received a diagnosis from a physician, 2. aged 18 years or older, 3. providing assistance with at least two instrumental activities of daily living or one activity of daily living, 4. providing care to a person with dementia in mid-stage as defined by a score between 4 and 6 on the Global Deterioration Scale (GDS), and 5. not paid to provide care
Exclusion criteria
1. are unable to read and speak English or Spanish, 2. previously participated in LST, and/or 3. have plans to place the care recipient in a skilled nursing facility within the next 6 months (i.e., study duration). 4. Participants must have a Patient Health Questionnaire (PHQ-9) score of less than 15, the threshold for moderately severe depression 5. Participants with severe depression
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Caregiver Self-Efficacy Scale | Baseline to 6 weeks | This is a unidimensional measure, with total score ranging between 1 and 10, with mean (SD) of 6.0 (2.1) in a sample of 158 caregivers (Ritter et al., 2022). Higher scores indicate higher confidence. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Complex Care Tasks Scale | Baseline to 6 weeks | A scale developed by the study team with total score ranging from 14 to 70. Items are summed and averaged. In our pilot study with 35 caregivers, the mean (SD) was 3.7 (0.8) (Meyer et al., 2022). Higher scores indicate higher confidence. |
| Caregiver Confidence in Medical Sign/Symptom Management (CCSM) scale | Baseline to 6 weeks | A 25 item scale which evaluates the efforts to support family caregivers of people with dementia in their daily medical management responsibilities requires a measure of caregiver self-efficacy (confidence).The total score on this scale ranges from 25 to 125, with items summed and averaged with a mean (SD) of 3.8 (0.6) in a sample of 194 caregivers (Zimmerman et al., 2018). Higher scores indicate higher confidence. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Patient Reported Outcomes Measurement Information systems (PROMIS) Global Health Score | Baseline to 6 weeks | For this scale, each of the each of the individual 10 items can be examined separately to provide specific information about perceptions of physical function, pain, fatigue, emotional distress, social health, and general perceptions of health (ranging from 1 to 5) with higher scores indicating better global health. There are also two-subscales, Physical Health (PH) and Mental Health (MH) that can be converted to standardized T-score values, with a T-score of 50 which represents the mean of the general population and higher scores indicate better physical and mental health. |
| Lubben Social Network Scale (LSNS-6) | Baseline to 6 weeks | A six item, self reported scale to assess social isolation in older adults by measureing perceived social support received by family and friends. The total score is calculated by finding the sum of the all items, with the score ranges between 0 and 30, with a higher score indicating more social engagement. |
| Revised Memory and Behavior Checklist | Baseline to 6 weeks | A 24-item scale used to measure behavioral challenges experienced by the person living with dementia, from the perspective of the caregiver. The possible range for this scale is 0-96, the mean frequency (SD) of behaviors is 34 (16.6) and the mean reaction (SD) is 22.7 (15.6). A lower score indicates better coping skills. |
Countries
United States
Outcome results
None listed