Caregiver Burden of People With Dementia
Conditions
Keywords
wait list control interventional study
Brief summary
The investigators will test the efficacy of Unidos en el Cuidado® (United in Caring, herein Unidos), a 3-session, culturally-adapted, group psychoeducational and skill-building intervention for 226 Spanish-speaking family caregivers in California.
Detailed description
The investigators will test the efficacy of Unidos en el Cuidado® (United in Caring, herein Unidos), a 3-session, culturally-adapted, group psychoeducational and skill-building intervention for 226 Spanish-speaking family caregivers in California. Based on a wait list trial design, and 4 observation points (baseline, post-intervention, 3-month and 6-month follow-ups), the investigators propose to demonstrate the efficacy of this new intervention (Aim 1), and evaluate for potential moderating conditions across subgroups (Aim 2; age, gender, educational level, etc.). Based on this quantitative component, the investigators will answer the following two aims: Aim #1. (Efficacy) Compared to a waitlist control group, is Unidos efficacious with regards to primary outcomes-PHQ-9 depression symptoms, RMBPC reactivity to memory and behavior problems, anxiety symptoms, and secondary outcomes-caregiver mastery, competence, and meaning over time? Aim #2: (Moderators). Do moderating conditions exist such that the intervention is more or less efficacious for subgroups based on age, gender, PLWD functioning? Qualitative component: After class completion, the investigators will draw from 40-50 focus group participants to elucidate the satisfaction and acceptability of the program. Both Unidos and wait list control participants will be randomly selected for focus group interviews which will be guided by open-ended inquiries around the nuanced, in-depth perspectives of program participation, acceptability, and recommendations (Aim 3). Aim #3: (Experience/Satisfaction). Will qualitative reports from focus groups signal satisfaction, nuanced differences with respect to the nature, structure, cultural/ language considerations of Unidos, and recommendations? Based on the scientific team and community partner's established expertise in dementia care, caregiving services, and underrepresented groups, the project is well positioned to address the linguistic and cultural preferences and needs of diverse Californians and the providers that serve them.
Interventions
OTHERSkill-building classes
Unidos en el Cuidado is a manualized, multi-family group intervention provided at no cost vis-à-vis videoconferencing or on-site by trained facilitators Sessions are held weekly for 1.5 hours. Class components include caregiver role identity; skills-building; knowledge attainment; attitudinal changes; resource-sharing; practice/role-plays; homework; videos, handouts. Classes will be provided online with some classes offered in the community, if available
The intervention is the same; the wait period is longer to receive the intervention described in Group A.
Sponsors
California Department of Public Health
University of Southern California
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to 100 Years
Healthy volunteers
Yes
Inclusion criteria
* identifies with being Hispanic or Latino descent * speaks and reads Spanish * dementia family caregivers living (or recently lived) in California or whose care recipient lives (or recently lived) in California * who identify as women, men, or non-binary, * age 18 years or older
Exclusion criteria
* Severe sensory or physical conditions that interfere with ongoing participation.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Depressive symptoms | baseline; post-intervention (within 1 week of completing intervention); 3-months; 6-months from baseline | Patient Health Questionnaire 9 item standardized scale: min. to max values=0 to 27; higher values indicate worse outcomes |
| Presence and reaction to memory and behavior problems shown by person with dementia | baseline; post-intervention (within 1 week of completing intervention); 3-months; 6-months from baseline | Revised Memory and Behavior Problems Checklist standardized scale: 1. Symptom presence (yes/no); min. to max values=0 to 24; higher values indicate worse outcomes 2. Symptom reaction: Include only items with frequency scores of 1 to 4 in the reaction scoring. Compute the mean reaction score by summing reaction scores of these items and then dividing by the number of items included in the sum. the range for each subscale is 0 to 4. Higher values indicate worse outcomes |
| Anxiety symptoms | baseline; post-intervention (within 1 week of completing intervention); 3-months; 6-months from baseline | Generalized Anxiety Disorder 7 item standardized scale: min. to max values=0 to 24; higher values indicate worse outcomes |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Caregiver Meaning | baseline; post-intervention (within 1 week of completing intervention); 3-months; 6-months from baseline | Caregiver Meaning standardized scale: min. to max values=0 to 24; higher values indicate better outcomes |
| Caregiver Mastery | baseline; post-intervention (within 1 week of completing intervention); 3-months; 6-months from baseline | Caregiver Mastery standardized scale: min. to max values=0 to 12; higher values indicate better outcomes |
| Caregiver Competence | baseline; post-intervention (within 1 week of completing intervention); 3-months; 6-months from baseline | Caregiver Competence standardized scale: min. to max values=0 to 12; higher values indicate better outcomes |
Countries
United States
Contacts
Primary ContactMaria P Aranda, PhD
Outcome results
None listed