Table 1 Overview of main domains and topics assessed at Time 1 for people with dementia and carers

Personal and background details

Demographic information

x

x

Diagnosis

x

Capitals, assets and resources

Social and environmental resources

Household income of the people with dementia

x

x

Social capital and social resources

x

x

Cultural capital

x

x

Housing and environment

x

x

Dementia-friendly community

x

Relationships and interactions

Social networks and interactions

x

x

Loneliness

x

x

Psychological traits and attitudes

Personality

x

x

Optimism

x

x

Self-esteem

x

x

Self-efficacy

x

x

Self-acceptance

x

Sense of self

x

Spirituality and religious activity

x

x

Attitudes to ageing

x

Challenges

Psychological state

Mood

x

x

Physical health and physical activity

Health conditions

x

x

Health state

x

x

Sensory impairment

x

x

Sleep

x

Falls

x

x

Nutrition and appetite

x

Alcohol use and smoking

x

x

Physical activity

x

x

Life events

Life events in past 12 months

x

x

Dementia-related issues

Stage and severity of dementia

x

Cognition

x

Functional ability

x

Neuropsychiatric symptoms

x

Dependence

x

Involvement in decision-making

x

Perceived stigma

x

Carer stress

x

Role captivity

x

Social restriction

x

Perceived severity of neuropsychiatric symptoms in the participant

x

Distress experienced as a result of the participant’s symptoms

x

Lost employment

x

Hours of care provided

x

Access to/use of services

Service receipt

x

Satisfaction with services

x

Extent of payment for care

x

Adaptation

Information about the condition

x

x

Understanding of the condition

x

x

Impact of the condition

x

Coping

x

Caregiving competence

x

Positive aspects of caregiving

x

Living well outcomes

Well-being

x

x

Life satisfaction

x

x

Quality of life

x

x

Activity participation

x

Expression of positive emotions

x