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Table 2 Summary overview of secondary outcome measures for future definitive trial

From: The feasibility of a Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: protocol for a non-randomised feasibility study

People with dementia: Data collected at baseline and post 15-week intervention

Quality of Life-Alzheimer’s Disease (QoL-AD) [66]. The QoL-AD is a brief, 13-item measure designed specifically to obtain a rating of the person’s quality of life from either the person living with dementia and/or the caregiver [66]. For people with dementia, the questionnaire is completed during an interview that usually takes 10–15 min. The QoL-AD has very good psychometric properties and can be completed with people with a wide range of severity of dementia [67]. Internal consistency is good with a Cronbach’s alpha coefficient of 0.82 [67]. The scale has good content validity, and it also correlates well with the Dementia Quality of Life scale (0.69) and with the Euroqol-5D scale (0.54), indicating good criterion concurrent validity [67].

Mini-Mental State Examination (MMSE) [68]. The MMSE consists of questions covering 11 domains. It is a simplified, scored form of the cognitive mental status examination, which assesses the cognitive aspects of mental functions.

The Geriatric Depression Scale–Short Form (GDS-15) [69]. This is a 15-item self-completed questionnaire or administered interview used to measure depression in older adults and takes 5–7 min to complete. Mitchell et al. [70] completed a meta-analysis on the diagnostic accuracy, clinical utility and added value of the GDS in primary care. They concluded that the GDS-15 has acceptable sensitivity and specificity (81.3 and 78.4%, respectively), “good” clinical utility for screening and should be used in the diagnosis of late-life depression in primary care.

Stigma Impact Scale (SIS) [71]. The SIS has 24 items and is completed by people with dementia to measure the perceived stigma inherent in progressive neurological diseases. The SIS can be administered via interview or self-completed and on average takes 10 min to complete. The internal consistency has a Cronbach’s alpha of 0.89, indicating good reliability [71]. Construct validity scores range from 0.44 to 0.84 [71].

Positive Psychology Outcome Measure (PPOM) [72]. The PPOM is used to measure hope and resilience in people with dementia. It consists of 16 items designed for either self-completion by participants or completion via an interview and takes 5–10 min to complete. The internal consistency has a Cronbach’s alpha of 0.94, indicating excellent reliability [72]. The PPOM remained moderately stable over a 1 week period (ICC: 880), and factor analyses indicated a two-factor structure solution with acceptable fit indices [72]. The PPOM was developed from the Resilience Scale of Wagnild and Young [73], an instrument which scored highly in Windle et al. [74] review as a good measure of resilience.

EQ-5D-5L [75]. The EQ-5D-5L is a 6-item standardized questionnaire that measures self-reported generic health status. The scoring system translates the quality of life scores into an economic value. Domain responses and utility scores have good test-retest reliability (ICC, 0.777; agreement, 76.4–98.1%) [76]. Scores of domains of the EQ-5D-5L correlated significantly (r, 0.57–0.74) with the scores of the SRS-22r domains, supporting construct validity [76].

Fitbit The Fitbit will allow participants’ sleep patterns and exercise activity to be monitored. Each Fitbit will be synced to a mobile device or PC. The Fitabase data management platform will be used to extract and aggregate participant data to facilitate analysis.

Caregivers: Data collected at baseline and post 15-week intervention

Zarit Burden Interview (ZBI) [77]. The ZBI is a 22-item self-completed questionnaire or administered interview used to assess the level of burden experienced by the primary caregivers of older people with dementia and people with disabilities. The ZBI takes on average 10 minutes to complete. It is a valid and reliable instrument with a Cronbach’s alpha value of 0.93; intra-class correlation coefficient for the test-retest reliability of 0.89 (n = 149) [78].

Short Sense of Competence Questionnaire (SSCQ) [79]. The SSCQ is a 7-item self-completed questionnaire or administered interview, which measures the sense of competence the caregiver of a person with dementia has. The SSCQ takes on average 5 min to complete. It is a valid and reliable instrument with a Cronbach’s alpha value of 0.76 [79].

Dementia Knowledge 20 (DK-20) [80]. The DK-20 is a 20-item self-administered questionnaire, which measures the knowledge people have regarding dementia. It is a 20-item self-administered questionnaire that takes on average 15 min to complete. Convergent validity reveals significant correlation between the DK-20 scale and the ADQ calculated using Spearman’s one-tailed test, r(175) = 0.36, p < 0.001 [80]. Test-retest reliability for the total scale is ICC = 0.73, p < 0.001, which indicated substantial reliability of the scale [80].

Resource Utilization in Dementia-Lite (RUD-Lite) [81]. The RUD-lite questionnaire consists of 25 items, and measures healthcare resource utilization among older adults with dementia and their caregivers, and time spent on formal and informal care by caregivers. The questionnaire is completed by the primary caregiver of the person with dementia and takes on average 15 minutes to complete. Wimo et al. [82] found the estimations provided by primary caregivers completing the RUD-lite to be accurate. The agreement between diaries and recall estimates was high for personal ADL (intra-class correlation (ICC) 0.93), supervision (ICC 0.87) and total time (ICC 0.91) and lower but acceptable for instrumental ADL (ICC 0.75) [82].

Adult carer quality of life (AC-QoL) [83]. The AC-QoL is a 40-item questionnaire, which measures the overall quality of life of adult caregivers over 8 domains: support for caring, caring choice, caring stress, money matters, personal growth, sense of value, ability to care, and caregiver satisfaction. The questionnaire takes 10 minutes to complete. Construct validity using exploratory factor analysis was conducted by Negri et al. [84] using the Kaiser–Meyer–Olkin (KMO) measure with a total score of 0.90, and all KMO values for single items were higher than 0.70, thus above the acceptability limit of 0.50 [84]. Cronbach alpha scores for the eight subscales range from 0.79 to 0.90, showing acceptable to excellent levels of reliability; alpha coefficient for the AC-QoL summed score was also excellent (0.93) [84].

Older people: Data collected at baseline and post 15-week intervention

Dementia Attitudes Scale (DAS) [85]. The dementia attitude’s scale is a 20-item questionnaire that measures attitudes towards dementia of members of the public, working professionals, and students. The DAS measures attitudes towards dementia of members of the public, working professionals, and students. DAS correlates significantly with scales that measure ageism and attitudes toward disabilities and has a Cronbach’s alphas ranging from 0.83 to 0.85 [85].

Dementia Knowledge-20 (DK-20) [80].