Eerder Erbij: The Path Towards Offering Timely Support for People With Dementia and Their Caregivers

The self-efficacy of informal caregivers measured by the Caregiver Self-efficacy Scale (CSES). This domain contains five items that are scored self-rated from 1 (not at all certain) to 10 (very certain) with higher scores indicating better outcomes.

Characteristics of the informal caregivers and persons with dementia collected by the TOPICS-MDS questionnaire to capture TOPICS-MDS:

demographic characteristics, relation between informal caregiver and person with dementia, perseverance time (informal caregiver) instrumental and personal activities of daily living (person with dementia).

Depression and anxiety of informal caregivers measured by the Hospital and Anxiety Depression Scale (HADS). The HADS provides separate scores for depression and anxiety, each with 7 items on a four-point Likert scale ranging from 0 (not at all) to 3 (a great deal of the time). Total scores range from 0 to 21 per complaint, with higher scores indicating more anxiety or depression severity for the informal caregiver.

Quality of life of informal caregivers measured by the Investigating Choice Experiments for the Preferences of Older People CAPability measure for Older people (ICECAP-O). The ICECAP-O measures five capability attributes of quality of life: attachment, security, role, enjoyment, and control. All items are scored from 1 (no capability) to 4 (full capability), with higher scores indicating a higher overall quality of life for the informal caregiver.

Quality of life of persons with dementia measured by the Quality of Life- Alzheimer's Disease scale (QOL-AD). The QOL-AD measures the quality of life for individuals with dementia on 13 separate items on a four-point Likert scale ranging from "poor" to "excellent" and was proxy-rated. Total scores range from 13 to 52 points, with higher total scores indicating a higher quality of life.

Experienced burden of informal caregivers measured by the EDIZ ("Ervaren Druk door Informele Zorg" / experienced burden of informal care). The EDIZ is a 9-item measurement for informal caregivers to assess self-perceived pressure from informal care. All items are scored on a five-point Likert scale ranging from 1 ("no!") to 5 ("yes!"), with higher scores indicating more perceived stress by the informal caregiver.

Cognitive status of the person with dementia as estimated by the informal caregiver measured by a selection of the Quick Dementia Rating System (QDRS). The QDRS measures cognitive impairment for people with dementia and consists of six behavioral and four cognitive questions though, in this research, only the cognitive questions will be included proxy rated. These four items are scored on a scale from 0 to 3, with higher scores indicating more cognitive impairment.

Health-related quality of life of the informal caregiver (self-rated) and the person with dementia (proxy-rated) will be determined via the EQ-5D-5L assessment developed by EuroQol, which measures health-related quality of life on five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression on a five-point Likert scale. The five responses provide a health profile indicated by a five-digit number, reflecting patient-reported categories across the dimensions. A higher score corresponds to more serious complaints, and thus a lower health-related quality of life for the informal caregiver.

Healthcare resource use of the informal caregivers and persons with dementia measured by the Resource Utilization in Dementia (RUD). This assessment measures the care resource use by the informal caregiver (self-rated) and the person with dementia (proxy-rated). For the caregiver, these resources include informal caregiver time (personal and instrumental activities of daily living and supervision), visits to care professionals, hospitalization, and productivity loss for those with a paid job. For the person with dementia, it covers accommodation (intermediate form, dementia-specific residential or long-term institutional care), visits to care professionals, hospitalizations, and social care services. The questions on medication usage were not included in this study.