Functional Activities Questionnaire (FAQ) (Acevedo et al., 2009; Pfeffer et al., 1982) |
This is a 10-item questionnaire completed by the caregiver as a proxy respondent for the care recipient to monitor changes in instrumental activities of daily living over time (e.g., preparing balanced meals, or following the news). Each item is rated with six response options: Dependent (3 points), Requires Assistance (2 points), Has Difficulty but Does By Self (1 point), Normal (0 points), Never Did but Could Do Now (0 points), and Never Did And Would Have Difficulty Now (1 point). Total scores range from 0 to 30 with higher scores indicating higher dependence. This outcome assessed dementia progression and was not expected to improve. |
Behavioral symptom severity (NPI-Q) (Acevedo et al., 2009; Kaufer et al., 2000) |
The NPI-Q is a clinical instrument for evaluating psychopathology in dementia with two scales, care recipient severity (NPI-Q-S) and caregiver distress (NPI-Q-D). If any of the 12 neuropsychiatric symptoms are present in the last month (e.g., depression, repeating), caregivers rate the level of severity for the IWDs on a 3-point scale (Mild–Severe). An overall severity summary score is calculated by adding the severity scores of all items. For any present symptom, caregivers also rate their own distress on a 6-point scale (Not Distressing at All-Extreme or Very Severe Distress). An overall distress summary score is calculated by adding the distress scores of all items. Higher scores indicate higher severity and distress. |
Caregiver strain (Modified Caregiver Strain Index; CSI) (Thornton & Travis, 2003) |
The CSI is a 13-item screener that measures caregiver strain. For each of the items (e.g., caregiving is inconvenient), the caregiver can respond either No (0), Yes Sometimes (1), or Yes on a Regular Basis (2). The total score is the sum of all item scores. Higher scores indicate higher strain. |
Caregiver burden (Zarit Burden Interview-6; ZBI-6) (Higginson et al., 2010) |
The ZBI-6 measures caregiver burden (e.g., having enough time to yourself). Each of the six items of the ZBI-6 is a statement the caregiver is asked to endorse using a 5-point scale. Response options range from 0 (Never) to 4 (Nearly Always). An overall burden summary score is calculated by adding the scores of all items, and higher scores indicate higher burden. |
Caregiving competence (Preparedness for Caregiving Scale; PCS) (Carter et al., 1998; Gutierrez‐Baena & Romero‐Grimaldi, 2021) |
The PCS is a self-rated instrument that consists of eight items that ask caregivers how well prepared they believe they are for multiple domains of caregiving (e.g., caring for care recipient’s physical needs). Responses are rated on a 5-point Likert scale with scores ranging from 0 (Not at All Prepared) to 4 (Very Well Prepared). The scale is scored by calculating the mean of all items answered with a total score range of 0 to 4. The higher the score the more prepared the caregiver feels for caregiving. |
Positive aspects of caregiving (Positive aspects of caregiving scale; PAC) (Tarlow et al., 2004). |
This scale was designed to measure psychosocial benefits of caregiving among family caregivers (e.g., feeling more useful). The PAC has nine statements and caregivers rate their level of agreement with those statements ranging from 1 (Disagree A Lot) to 5 (Agree A Lot). An overall score can be obtained by adding their item scores. Higher scores indicate more perceived positive benefits. |
Unmet needs (Measure of Unmet Needs; UN) (Gaugler et al., 2004) |
The UN is a 34-item survey for caregivers that requires 0 (No) or 1 (Yes) answers regarding additional assistance with categories such as activities of daily living, dementia symptoms, and social support. A total score can be obtained by summing all 34 items. The higher the score, the higher the number of unmet needs the caregiver reports having. |
Dementia knowledge (Epidemiology/Etiology Disease Scale; EEDS) (Connell & Holmes, 1996; Roberts & Connell, 2000) |
The EEDS is a 14-item True/False questionnaire about dementia. An example of a question includes ‘There is no cure for Alzheimer’s disease (True)’. Correct answers are scored one point each and a total score is calculated by adding the 14 items. The higher the score, the higher the dementia knowledge. |
Social support (Interpersonal Support Evaluation List; ISEL-12) (Merz et al., 2014) |
The ISEL-12 is a 12-item measure of perceptions of social support. This questionnaire has three different subscales designed to measure dimensions of perceived social support: Appraisal support (e.g., someone to share private worries with), belonging support (e.g., being invited to do things), and tangible support (e.g., finding help with daily chores). Each dimension is measured by 4 items on a 4-point scale ranging from ‘Definitely True’ to ‘Definitely False’. Higher scores indicate higher perceived support. |
Coping (Coping Orientation to Problems Experienced Inventory; COPE-28) (Carver, 1997; Perczek et al., 2000) |
The COPE-28 is a 28 item self-report questionnaire designed to measure effective and ineffective ways to cope with caregiving. The scale is rated using a 4-point Likert scale ranging from 1 (I Haven’t Been Doing This at All) to 4 (I Have Been Doing This A Lot). Subscales include problem-focused coping (e.g., taking action to improve the situation), emotion-focused coping (e.g., getting emotional support), and avoidant coping (e.g., not believing the situation is real). High scores indicate caregiver participants use that strategy more often. Higher scores in problem-focused coping and lower avoidant coping are typically indicative of positive outcomes. |
Depressive symptoms (Center for Epidemiologic Studies Depression Scale; CES-D-10) (Cheng & Chan, 2005; González et al., 2017) |
This is a 10-item, self-report rating scale that measures characteristic symptoms of depression in the past week (e.g., depression, loneliness). Each item is rated on a 4-point scale, from 0 (Rarely or None of the Time) to 3 (Most or All of the Time) with positively worded items (items 5 and 8) reverse scored. Items yield summary scores that range from 0 to 30, with higher scores indicating higher depression severity. |
Affect (Scale of Positive and Negative Experience; SPANE) (Daniel-González et al., 2020; Diener et al., 2010) |
The SPANE comprises 12 items, six positive (SPANE-P; e.g., positive, pleasant) and six negative experiences (SPANE-N; e.g., negative, unpleasant). Both sets of items measure three general and three specific emotions encompassing a wide range of human experiences. The instrument uses a five-point frequency rating scale ranging from 1 (Very Rarely or Never) to 5 (Very Often or Always). Total scores range from 6 to 30 with high scores indicating high positive (SPANE-P) or high negative affect (SPANE-N). |
Self-perceived health (Patel et al., 2003). |
This is a one-item question that is self-reported by the caregiver. The question includes a four-point Likert scale and asks ‘Overall, how would you rate your health- Excellent, Good, Fair, or Poor?’. |