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Online Life Story Book: A study on its effect for people with early dementia and their caregivers

Online Life Story Book: A study on its effect for people with early dementia and their caregivers - Online Life Story Book

Status
Active, not recruiting
Phases
Unknown
Study type
Interventional
Source
NL-OMON
Registry ID
NL-OMON43313
Enrollment
106
Registered
2016-04-28
Start date
2016-06-29
Completion date
Unknown
Last updated
2024-04-23

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

neuropsychiatrische symptomen neuropsychiatric symptoms in early dementia

Interventions

The Online Life Story Book is an e-health application that allows to place personal memories on a dynamic timeline. The timeline is easily marked with historical years. Memories like life events, an

Sponsors

Universiteit Twente
Lead Sponsor

Eligibility

Age
18 Years to 99 Years

Inclusion criteria

Inclusion criteria: Inclusion criteria: 1.Mild Cognitive Impairment or early dementia (Clinical Dementia Rating 0.5 or 1; Morris, 1993); 2.Living at home and receiving informal care; 3.Being mentally competent to provide informed consent

Exclusion criteria

Exclusion criteria: Exclusion criterion is past psychotrauma (module posttraumatic stress disorder assessed with the Mini International Neuropsychiatric Interview)

Design outcomes

Primary

MeasureTime frame
The main study parameters are Neuropsychiatric symptoms (NPS) at follow-up (i.e., six months after the first measurement). NPS are measured with the NeuroPsychiatric Inventory (NPI).

Secondary

MeasureTime frame
1) The burden and quality of life of the informal caregiver are assessed with the EDIZ, the emotional burden scale of the NPI, and the CarerQol. 2) The health economic evaluation will be carried out based on the reported care consumption and quality of life (EQ5D) of the person with dementia. 3) The longer term effect on (time to) nursing home admittance will be carried out in month 18 together with the general practitioner). 4) The experiences with the intervention will be assessed with interviews with 28 stakeholders (persons with dementia, informal caregivers, volunteers, and professionals) and the use and complexity of the life story book will be assessed through a content analysis of 20 life story books.

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)