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Table 2 Self -Report Measures of Well-Being used in Existing Dementia Studies

From: Measuring the well-being of people with dementia: a conceptual scoping review

THEME: EMOTIONAL WELL-BEING

• Positive States n = 3a

Dementia Mood Picture Test (DMPT)b [54]. Measured outcome of a controlled trial of individualised activities within care homes [55].

Derogatis Affects Balance Scale (DABS-40) [56]. Reliability and validity with people with dementia reported in authors’ longitudinal study.

Positive and Negative Affect Scale (PANAS-20) [57]. Measured outcome of a singing intervention in dementia [58].

CASP-19: Pleasure Sub-Scalec [59]. Measured positive quality of life in a population-based cohort study of older people [60]. Validated with a sample of people with dementia [61].

THEME: PSYCHOLOGICAL WELL-BEING

• Going Beyond n = 7a

Herth Hope Index (HHI-12) [62]. Measured outcome of spiritual reminiscence intervention in mild-moderate dementia [63] and also feasibility of Dignity Therapy in early stage dementia [64].

Life Orientation Test – Revised (LOT-R-10) [65]. Validated in a cross-sectional early-stage dementia study [66].

Meaning in Life Questionnaire (MLQ-10) [67]. Validated in a cross-sectional early stage dementia study [66].

Positive Psychology Outcome Measure (PPOM: Hope - 8-item subscale)b;c [68]. Internal consistency and convergent validity with a dementia sample established by authors.

Spirituality Index of Well-Being (SIWB-12) [69]. Measured outcome of spiritual reminiscence intervention in mild-moderate dementia [63].

Systems of Belief Inventory (SBI-15) [70]. Used in an exploratory mixed methods study of spirituality and quality of life in people with dementia [71].

Thriving of Older People Assessment Scale (32-item TOPAS) [72]. Correlates of thriving in dementia explored by authors in a cross-sectional care home study.

• Agency and Purpose n = 6a

Bangor Goal Setting Interview (BGSI)b [73]. Measured outcome of goal setting interventions in early stage dementia [22, 49].

CASP-19: Control and Autonomy sub-scales.c [59]. Measures positive quality of life. Used in a population-based cohort study of older people [60]. Psychometric validation study with a dementia sample [61].

COOP-WONCA charts of functional statusc [74]. Used in a quality of life study with 67 people, in care homes - some psychometric properties reported [75].

Decision Making Involvement scale (DMI-15)b [76]. Dementia- specific measure of perceived involvement in everyday decision-making - some psychometric properties reported.

Engagement and Independence in Dementia Questionnaire (26-item EDI-Q)b [77]. Dementia specific measure – some psychometric properties reported by scale developers.

Positive Psychology Outcome Measure(PPOM: Resilience - 8-item subscale)b; c [68]. Dementia specific measure - internal consistency /convergent validity established by authors.

Resilience Scale (RS-14) [78]. Part validated in a cross-sectional early stage dementia study [66].

Scales of Psychological Well-Being (SPWB):cPurpose in Life&Environmental Mastery sub-scales [79]. Measured outcome of a retirement home reminiscence intervention [80]. Internal consistency of purpose in life sub-scale reported in a cross-sectional study of goal pursuit in dementia [81].

• Positive Sense of Selfn = 6a

General Self Efficacy Scale (GSES-10) [82]. Measured effectiveness in a RCT of self-management in early stage dementia [40].

Patient Dignity Inventory (PDI-25) [83]. Measured outcome of Dignity Therapy in 7 people with dementia [64].

Rosenberg Self Esteem Scale (RSES-10) [84]. Measured outcome of a reminiscence intervention in retirement homes [80] and a multi-modal well-being intervention in early stage dementia [85].

Sherer Self Efficacy Scale (SES; 23-items) [86]. Measured outcome of a choral intervention [58].

Self-Identity in Dementia Questionnaire (SID-Q)c [87]. Originally designed for assessment of role-identity in people with dementia in care homes. Self-report version used in cohort / correlational studies of identity, quality of life, cognition and functional status [88, 89].

Scales of Psychological Well-Being (SPWB):cSelf-Acceptance sub-scale [79]. Measured outcome of a retirement home reminiscence intervention [80].

Tennessee Self-Concept Scale (TSCS; 20-item) [90]. Used in a longitudinal cohort study [42].

THEME: SOCIAL WELL-BEING

• Connection and Belongingn = 7a

Brief Sense of Community Scale (BSCS-8) [91]. Measured outcome of an intergenerational intervention [92].

Gratitude Questionnaire (GQ-6) [93]. Part validated in a cross-sectional early stage dementia study [66].

Interpersonal Support Evaluation List (ISEL-12) [94]. 6-item used to predict hospitalisation in a cohort study [95].

Lubben Social Network Scale (LSSN-10) [96]. Measured outcome of a cooking intervention [97].

Mutuality Scale (MS-15) [98]. Used to predict depression in cohort study [43].

Positive Affect Index (5-item PAI) [99]. Used in a longitudinal study of predictors of relationship-quality over 8 months [100,101,102]. Preliminary evidence of psychometric properties in dementia [103].

Quality of the Current Relationship in Caregiving (QCPR-14) [104]. Cohort study; stability in scores over 6-month period [105]. Relationship with carer improved for person with dementia in a joint- reminiscence intervention [106]; and an in-home individualised cognitive stimulation therapy [107].

Scales of Psychological Well-Being (SPWB):cPositive relations sub-scale [79]. Measured outcome of a retirement home reminiscence intervention [80].

THEME: LIFE SATISFACTION

• Valuing Life n = 6a

CASP-19c [59]. Four Sub- scales: Control, Autonomy, Self-realisation and Pleasure. 19 and 12-item versions; Used in a population-based cohort study with older people; dementia n = 51, but data not separated out [60]. Psychometric validation with a sample of people with dementia [61].

Life Satisfaction Index (LSI) [108]. Adapted 18-item version used as a secondary outcome measure for a spiritual intervention in mild-moderate dementia [63].

Satisfaction with Life Scale (5-item SWLS) [109]. Part validated in a cross-sectional early stage dementia study [66].

Short Warwick-Edinburgh Mental Well-Being Scale (7-item SWEMWBS)c [110]. Includes well-being and positive functioning (over previous 2 weeks). Covers optimism, feeling useful, feeling relaxed, dealing with problems, thinking clearly, feeling close to other people and decisiveness.

Scales of Psychological Well-Being (SPWB)c [79]. Six sub-scales: Self –acceptance, positive relations with others, Autonomy, Environmental mastery, Purpose in life, and Personal growth; each with 14-items (other versions available). ‘Positive relations with Others’ sub-scale used to measure outcome of a retirement home reminiscence intervention [80].

WHO-5c [111]. A 5-item measure of subjective well-being and mood. Adapted to measure a recovery-focussed intervention in early stage dementia [112].

  1. aDenotes number of instruments used in dementia research;b denotes instruments developed specifically for people with dementia; c denotes instruments that fitted more than one concept and /or domain