Health care for people living with dementia and their families – analysis of social health and lived experience and their association to clinical characteristics of the disease

Recruiting

• Conditions: F00; F01; F02; F03; Dementia in Alzheimer disease; Vascular dementia; Dementia in other diseases classified elsewhere; Unspecified dementia

• Registration Number: DRKS00026047
• Lead Sponsor: Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. (DZNE) - Standort Witten

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2021-10-04
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 200

Inclusion Criteria

Test person
Inclusion criteria
- Test person from DESCRIBE
- Informed consent for the respective domains of social health and lived experience including home visit is available

Relative of the test person or informant designated by the test person
Inclusion criteria
- Test person is a participant in the DESCRIBE study
- The relative/informant included in the study is the person designated as the informant by the test person as part of the DESCRIBE study
- In the DESCRIBE study, there is consent from the test person for the primary carer/informant to provide information about the test person (will be repeated for DESCRIBE-TODAY)
- Primary carers/informants must be able to give information about symptoms of the proband in everyday life, according to self-assessment
- An informed consent of the primary carer/informant is available

Exclusion Criteria

Test person
Exclusion criteria
- Insufficient knowledge of German (comprehension)

Primary carer of the test person or determined informant

- person with dementia and primary carer/informant do not live together in close proximity (common household, same village/neighborhood, etc.)
- Insufficient knowledge of German (comprehension)

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Aim of the study: Survey of social health and lived experience and association with various factors.