Alzheimer's Disease, Dementia
Conditions
Keywords
Alzheimer's Disease, Dementia, caregiving, caregiver, coping, coping with caregiving, stress, Hispanic caregiver, Latino caregiver
Brief summary
Photozig and Stanford University are creating a new program for Hispanic dementia caregivers to help cope with caregiving, alleviate related stress, and enhance quality of life for caregivers, with funding from the National Institute on Aging. The program includes a new education online telenovela (Webnovela), online resources, handouts and a DVD (for users without Internet) on how to deal with caregiving stress and handle difficult situations.
Detailed description
The goal of Webnovela program is to evaluate and develop materials for helping caregivers to cope with caregiving, alleviate related distress, and improve their quality of life. The investigators are evaluating different materials, which may provide caregiving strategies, practical tips and help to enhance caregivers' skills to deal with demanding tasks of caregiving, alleviate related stress, and improve quality of life. Research Program Steps: 1. Caregivers will be asked some simple questions about themselves and their family members to see if they are eligible for the project (fill out Enrollment Form and Informed Consent). 2. A Program survey will be sent, which can be completed online, or returned in a pre-mailed envelope. 3. Participants will receive links to online resources, related materials and instructions. The investigators ask participants to access the online resources, read provided brochures and guides, and follow the instructions. Materials are expected to help participants in their caregiver role. 4. After completing the program, the second and final survey should be filled out online or returned by pre-mailed envelope.
Interventions
BEHAVIORALWebnovela
BEHAVIORALInformation
Sponsors
National Institute on Aging (NIA)
Stanford University
Photozig, Inc.
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Care for an individual with Alzheimer's Disease or other dementia. * Have Internet access or own a DVD player. * Minimum age of 18 years old. * Belong to Hispanic/Latino ethnic group. * Spend at least 8 hours/week caring for a person with dementia, which may include assisting, watching, monitoring, or being available to help (e.g. during sleep time)
Exclusion criteria
* Severe psychological or physical illness. * Inability to read and follow Spanish instructions. * High level of depressive symptoms. * Unwillingness to participate in all aspects of the study.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Stress on the Perceived Stress Scale | 3 months | The Perceived Stress Scale measures the overall level of stress. This instrument contains 10 items accessing overall appraisals of stress in the past month. Minimum score (best value)=0. Maximum score (worst value)=40. Higher values represent a worse outcome. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Caregiver Burden on the Revised Memory and Behavior Problems Checklist | 3 months | This scale measures the type/number of dementia patients disturbing behaviors, and how much they bother caregivers with 24 items describing possible troublesome behaviors that the patient might evidence in the past month. Caregivers are first asked whether the dementia patient had displayed any of these in the time period, and secondly to rate on a 5-point scale (0=not at all; 4= extremely) how much this bothered or upset them. A conditional bother score is calculated which is the upset or bother ratings for only the problematic behavior that occurred. The scale refers to the caregiver. Minimum score (best value)=0. Maximum score (worst value)=4. Higher values represent a worse outcome. |
Countries
United States
Participant flow
Participants by arm
| Arm | Count |
|---|---|
| Webnovela Caregivers will watch the Webnovela and read related information. The Webnovela is a short online Telenovela in Spanish, specifically designed for Hispanic caregivers on how to cope with dementia caregiving. A DVD will be available to participants without Internet access.
Webnovela | 75 |
| Control Caregivers will be directed to existing web sites, such as NIA Alzheimer's and Dementia Resources in Spanish. Participants will receive related materials in Spanish language.
Information | 75 |
| Total | 150 |
Baseline characteristics
| Characteristic | Webnovela | Control | Total |
|---|---|---|---|
| Age, Continuous | 54.2 years STANDARD_DEVIATION 11.2 | 51.5 years STANDARD_DEVIATION 9.4 | 52.9 years STANDARD_DEVIATION 10.4 |
| Ethnicity (NIH/OMB) Hispanic or Latino | 75 Participants | 75 Participants | 150 Participants |
| Ethnicity (NIH/OMB) Not Hispanic or Latino | 0 Participants | 0 Participants | 0 Participants |
| Ethnicity (NIH/OMB) Unknown or Not Reported | 0 Participants | 0 Participants | 0 Participants |
| Sex: Female, Male Female | 64 Participants | 65 Participants | 129 Participants |
| Sex: Female, Male Male | 11 Participants | 10 Participants | 21 Participants |
Adverse events
| Event type | EG000 affected / at risk | EG001 affected / at risk |
|---|---|---|
| deaths Total, all-cause mortality | — / — | — / — |
| other Total, other adverse events | 0 / 75 | 0 / 75 |
| serious Total, serious adverse events | 0 / 75 | 0 / 75 |
Outcome results
Primary
Stress on the Perceived Stress Scale
The Perceived Stress Scale measures the overall level of stress. This instrument contains 10 items accessing overall appraisals of stress in the past month. Minimum score (best value)=0. Maximum score (worst value)=40. Higher values represent a worse outcome.
Time frame: 3 months
Population: One (1) subject in the Webnovela group and one (1) subject in the Control group completed the study, but they did not have full data related to the Primary Outcome Stress on the Perceived Stress Scale. These subjects were not included in this data analysis.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Webnovela | Stress on the Perceived Stress Scale | 14.57 units on a scale | Standard Deviation 5.54 |
| Control | Stress on the Perceived Stress Scale | 15.37 units on a scale | Standard Deviation 5.89 |
Secondary
Caregiver Burden on the Revised Memory and Behavior Problems Checklist
This scale measures the type/number of dementia patients disturbing behaviors, and how much they bother caregivers with 24 items describing possible troublesome behaviors that the patient might evidence in the past month. Caregivers are first asked whether the dementia patient had displayed any of these in the time period, and secondly to rate on a 5-point scale (0=not at all; 4= extremely) how much this bothered or upset them. A conditional bother score is calculated which is the upset or bother ratings for only the problematic behavior that occurred. The scale refers to the caregiver. Minimum score (best value)=0. Maximum score (worst value)=4. Higher values represent a worse outcome.
Time frame: 3 months
Population: Two (2) subjects in the Webnovela group completed the study, but they did not have full data related to the Secondary Outcome Caregiver Burden on the Revised Memory and Behavior Problems Checklist. These subjects were not included in this data analysis.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Webnovela | Caregiver Burden on the Revised Memory and Behavior Problems Checklist | 0.51 units on a scale | Standard Deviation 0.57 |
| Control | Caregiver Burden on the Revised Memory and Behavior Problems Checklist | 0.60 units on a scale | Standard Deviation 0.86 |