Age: Information on date of birth was used to calculate participant's age at time of enrollment in the intervention.
Gender: Response categories include: 'Male' or 'Female.'
Ethnicity: Response categories include: 'Hispanic/Latino Origin;' 'Not of Hispanic/Latino Origin;' or 'Unknown.'
Race: Response categories include: 'White;' 'African American;' 'American Indian or Alaska Native;' 'Asian Indian;' 'Chinese;' 'Filipino;' 'Japanese;' 'Korean;' 'Vietnamese;' 'Other Asian;' 'Native Hawaiian;' 'Guamanian or Chamorro;' 'Samoan;' and 'Other Pacific Islander.' To harmonize the data across grantees, 'Asian Indian,' 'Chinese,' 'Filipino,' 'Japanese,' 'Korean,' 'Vietnamese,' 'Other Asian,' 'Native Hawaiian' 'Guamanian or Chamorro,' 'Samoan,' and 'Other Pacific Islander' were combined into a single 'Asian/Pacific Islander' category.
Education: Education is measured as the number of years of school attended. To harmonize the data across grantees, years of education were grouped into the following categories: 'Less than High School' (0-11); 'High School' (12); 'Some College' (13-15); 'College Graduate' (16); and 'Some Graduate Work' (17 or more).
Marital Status: Response categories include: 'Single/Never Married;' 'Married;' 'Married but not Living Together;' 'Divorced;' 'Separated;' 'Widowed;' and 'Unknown.' To harmonize data across the grantees, 'Separated' and 'Divorced' were combined to create 'Divorced/Separated,' and 'Married but not Living Together' was collapsed into 'Married.'
Primary Language: The question asks whether English is the primary language of the participant. Responses include: 'Yes' or 'No.' To harmonize the data across grantees, respondents who indicated that Spanish was their primary language was included in the 'Spanish' category.
Relationship Status: This variable describes the relationship between the caregiver and care recipient. Response categories include: 'Husband;' 'Wife;' 'Mother;' 'Father;' 'Son;' 'Daughter;' 'Sibling;' 'Grandson;' 'Granddaughter;' 'Brother;' 'Sister;' 'Legal Guardian;' 'Other Relative;' and 'Other Non-Relative.' To harmonize the data across grantees, 'Grandson' and 'Granddaughter' were collapsed into the 'Other Relative' category, 'Brother' and 'Sister' were collapsed into 'Sibling,' and 'Legal Guardian' was collapsed into 'Other Non-Relative.'
Income: Response categories representing yearly income include: 'Less than $15,000;' '$15,000-$25,000;' '$25,001-$35,000;' '$35,001-$50,000;' '$50,001-$75,000;' '$75,001-$100,000;' or 'Greater than $100,000.'
Physical Function: Two scales were used to measure physical function. The first is a functional health scale measuring the number of difficulties with accomplishing six ADLs. The care recipient's ability is reported by the caregiver. Caregivers identify whether the care recipient can perform an activity 'Independent' (1) of the caregiver, or 'Dependent' (0) on the caregiver. These activities include: bathing, dressing, toileting, transfer, continence and feeding. Each item is scored and summed. The summary score ranges from 0-6, with a higher score indicating a higher level of physical function.
The second measure of physical function assesses an individual's ability to perform eight IADLs. IADL functions are more concerned with independent living skills rather than basic ADLs. Assessments of the care recipient are reported by the caregiver. Function levels measured include ability to use the telephone, shopping, food preparation, housekeeping, laundry, mode of transportation, responsibility for own medications and ability to handle finances. Response categories include multiple levels of independence or dependence for each activity, with all options scoring either 0 (for some level of dependence) or 1 (for some level of independence). Responses to each item is scored and summed. The summary score ranges from 8-31, with a higher score indicating a higher level of physical function.
Cognitively Impaired: Cognitive impairment is measured by the Mini-Cog test. The Mini-Cog test is an instrument to screen for cognitive impairment in older adults. The test uses a three-item recall test for memory and a scored clock-drawing test. Each test is scored and summed. The summary score ranges from 0-5. A score of 0-2 indicates a positive screen for dementia, while a score of 3-5 indicates a negative screen for dementia.
Depression: Depression is measured using the PHQ-9. The PHQ-9 is the depression module of the PHQ which is an instrument for screening, diagnosing, monitoring and measuring the severity of depression. The PHQ-9 incorporates DSM-IV depression diagnostic criteria with other leading depressive symptoms. Questions ask how often respondents have been bothered by specific problems (listed below) over the last two weeks. The tool rates the frequency of the symptoms. Responses include: 'Not at all' (0); 'Several Days' (1); 'More than Half the Days' (2); and 'Nearly Every Day' (3). Responses to each item are summed and the summary score ranges from 0-27. The summed scores are then categorized as follows: 'No Depression' (0-4); 'Minimal Symptoms' (5-9); 'Minor Symptoms' (10-14); 'Major Depression, Moderate' (15-19); and 'Major Depression, Severe' (20 or higher). Items include:
- Little interest or pleasure in doing things.
- Feeling down, depressed, or hopeless.
- Trouble falling or staying asleep, or sleeping too much.
- Feeling tired or having little energy.
- Poor appetite or overeating.
- Feeling bad about yourself--or that you are a failure or have let yourself or your family down.
- Trouble concentrating on things, such as reading the newspaper or watching television.
- Moving or speaking so slowly that other people could have noticed? Or the opposite--being so fidgety or restless that you have been moving around a lot more than usual.
- Thoughts that you would be better off dead or of hurting yourself in some way.
Anxiety: Anxiety is measured using the GAD-7 scale. Response categories include: 'Not at all' (0); 'Several Days' (1); 'More than Half of the Days' (2); and 'Nearly Every Day' (3). Responses to each item are summed. The summary score ranges from 0-21, with higher scores indicating higher levels of anxiety. Items include:
Over the past two weeks how often have you...
- Feeling nervous, anxious, or on edge.
- Not being able to stop or control worrying.
- Worrying too much about different things.
- Trouble relaxing.
- Being so restless that it's hard to sit still.
- Becoming easily annoyed or irritable.
- Feeling afraid as if something awful might happen.
Social Support: Social support is measured using the LSNS-6. The LSNS-6 is correlated with mortality, all-cause hospitalization, health behaviors, depressive symptoms, and overall physical health. Response categories include: 0=none; 1=1; 2=2; 3=3 or 4; 4=5-8; and 5=9 or more. Responses to the following questions are summed and the summary scores range from 0-30, with higher scores indicating higher social support:
- How many relatives do you see or hear from at least once a month?
- How many relatives do you feel at ease with that you can talk about private matters?
- How many relatives do you feel close to such that you could call on them for help?
- How many of your friends do you see or hear from at least once a month?
- How many friends do you feel at ease with that you can talk about private matters?
- How many friends do you feel close to such that you could call on them for help?
Risk of Abuse: Risk of abuse is measured using 12 questions on the VASS. Each item has two possible responses: 'Yes' (1) and 'No' (0). VASS is composed of four factors, with three items each, representing the following domains: vulnerability (items 1-3), dependence (items 4-6), dejection (items 7-9), and coercion (items 10-12). The questions are as follows:
- Are you afraid of anyone in your family?
- Has anyone close to you tried to hurt you or harm you recently?
- Has anyone close to you called you names or put you down or made you feel bad recently?
- Do you have enough privacy at home?
- Do you trust most of the people in your family?
- Can you take your own medication and get around by yourself?
- Are you sad or lonely often?
- Do you feel that nobody wants you around?
- Do you feel uncomfortable with anyone in your family?
- Does someone in your family make you stay in bed or tell you you're sick when you know you're not?
- Has anyone forced you to do things you didn't want to do?
- Has anyone taken things that belong to you without your OK?
Caregiver Burden: Caregiver burden is measured using the 22-item Zarit Burden Interview. Questions ask about the impact of the dementia patient's disabilities on the caregiver's life (listed below). For each item, response options include: 'Never' (0); 'Rarely' (1); 'Sometimes' (2); 'Quite Frequently' (3); and 'Nearly Always' (4). The Burden Interview is scored by summing the numbered responses of the individual items. Summary scores range from 0-88, with higher scores indicating greater caregiver distress. Common categories used for interpretation of scores include, 'Little or No Burden' (0-20); 'Mild to Moderate Burden' (21-40); 'Moderate to Severe Burden' (41-60); and 'Severe Burden' (61-88). The following questions are included in the interview:
- Do you feel that your relative asks for more help than he or she needs?
- Do you feel that, because of the time you spend with your relative, you don't have enough time for yourself?
- Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?
- Do you feel embarrassed about your relative's behavior?
- Do you feel angry when you are around your relative?
- Do you feel that your relative currently affects your relationship with other family members?
- Are you afraid about what the future holds for your relative?
- Do you feel that your relative is dependent upon you?
- Do you feel strained when you are around your relative?
- Do you feel that your health has suffered because of your involvement with your relative?
- Do you feel that you don't have as much privacy as you would like, because of your relative?
- Do you feel that your social life has suffered because you are caring for your relative?
- Do you feel uncomfortable having your friends over because of your relative?
- Do you feel that your relative seems to expect you to take care of him or her, as if you were the only one he or she could depend on?
- Do you feel that you don't have enough money to care for your relative, in addition to the rest of your expenses?
- Do you feel that you will be unable to take care of your relative much longer?
- Do you feel that you have lost control of your life since your relative's death?
- Do you wish that you could just leave the care of your relative to someone else?
- Do you feel uncertain about what to do about your relative?
- Do you feel that you should be doing more for your relative?
- Do you feel that you could do a better job in caring for your relative?
- Overall, how burdened do you feel in caring for your relative?
Potential Substance Dependency: Potential substance dependency is measured by the CAGE substance abuse screening tool. Response categories include: 'Yes' (1) or 'No' (0). CAGE is scored by summing the numbered response to the individual items. Summary scores range from 0-4, with a higher total score indicating a potential alcohol problem. A total score of two or greater is considered clinically significant.
- 1.Have you ever felt you should Cut down on your drinking?
- 2.Have people Annoyed you by criticizing your drinking?
- 3.Have you ever felt bad or Guilty about your drinking?
- 4.Have you ever had a drink first thing in the morning to steady your nerves or to get rid of a hangover (Eye opener)?
History of Abuse: Response categories include: 'Yes' and 'No.'
History of Violence: Response categories include: 'Yes' and 'No.'
History of Substance Abuse: Response categories include: 'Yes' and 'No.'
History of Alcohol Abuse: Response categories include: 'Yes' and 'No.'