Table 2 Description of measures

CDR [49]

Diagnostic criteria

Care partner

Assesses six domains of cognitive and functional performance: memory, orientation, judgment & problem solving, community affairs, home & hobbies, and personal care. 0 = no cognitive impairment, 0.5 = questionable or very mild dementia, 1, 2 and 3 for mild, moderate and severe dementia. Scores in each of these are combined to obtain a composite score ranging from 0 (none) through 3 (severe).

FAQ [50]

Functional changes

Care partner

10-item scale measuring instrumental activities of daily living. The score range for each item is 0–3, with higher scores indicate greater impairment; 0 = normal or never did but could do now; 1 = has difficulty but does by self or never did but would have difficulty now; 2 = requires assistance; 3 = dependent.

MMSE [40]

Cognition

Participant

30-point questionnaire, with items assessing orientation, attention, immediate and short-term recall, language, and the ability to follow simple verbal and written commands. Lower scores indicating more severe cognitive problems.

GSES [39]

Self-efficacy

Primary outcome

Participant

10-item psychometric scale designed to assess a person’s sense of competence for dealing effectively with a variety of stressful situations. Responses are rated on a 4-point Likert scale. Total score ranges from 1o to 40, with higher values indicating greater self-efficacy.

CSDD [41]

Depressive symptoms

Participant and care partner separately

Based on impressions from interviews with the person with dementia and their care partner, the final ratings of the CSDD items represent the rater’s clinical impression rather than the responses of the care partner or the person with dementia. The scale consists of 19 items that ranges from 0 (absent) to 2 (severe). Total score ranges from 0 to 38, with higher values indicating more depressive symptoms.

DEMQOL [42]

Quality of life and well-being

Participant and care partner separately

The measure consists of two questionnaires. DEMQOL, conducted with person with dementia is a 28-item interviewer- administered questionnaire with the score range of 28 to 112. DEMQOL-Proxy is a 31-item interviewer-administered questionnaire answered by a care partner with a score range of 31 to 124. The DEMQOL-Proxy is also validated as a method for calculating QALYs for health economic analysis.

EQ-5D-5L [43]

Health-related quality of life

Participant and care partner separately

Participant and their care partner indicate the participant’s health state across five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimension has 5 levels: no problems, slight problems, moderate problems, severe problems and extreme problems. Additionally, the participant’s self-rated health is measured on a vertical, visual analogue scale, where 0 represents ‘worst imaginable health state’ and 100 represents ‘best imaginable health state’.

NPI-Q [44]

Neuropsychiatric symptoms

Care partner

12-item questionnaire developed to assess behavioural disturbances in people with dementia. NPI-Q is a validated structured interview assessment with a care partner. Scores are entered for the frequency and severity of each symptom over the last four weeks, and subsequently multiplied into a symptom score. The total possible maximum score is 144. A higher score reflects increased frequency and severity of the disturbances.

Self-rated Health Behaviour Change

Health behaviour changes

Participant and care partner separately

The SHAPE research team will create a health reporting form based on the SHAPE intervention that asks about specific health-related change that occurred during each time period. Data from self- and family report.

CSRI [45]

Use of support services

Participant and care partner together

Used to estimate the cost of the participant’s service package and of support services for the care partner. Information collected: participant’s use of hospital, community-based and day services, participant’s mental health medications, care partner’s use of support services and mental health medications. Questions cover a retrospective period of 3 months.

RSS [46]

Carer stress

Care partner

15-item, 5-scale self-report measure designed to assess the degree of distress and social upset experienced by a relative as the result of caring for a person with physical and/or behavioural difficulties.

SSCQ [47]

Carer sense of competence

Care partner

7-item questionnaire covering 3 domains: consequences of involvement in care for the personal life of the care partner, satisfaction with one’s own performance as a care partner, and satisfaction with the person with dementia as a recipient of care.

DKAS [48]

Knowledge about dementia

Care partner

25-item scale measuring dementia knowledge across four domains: causes and characteristics, communication and behaviour, care considerations, and risks and health promotion.