Cross-cultural acceptability of interventions that may increase control at the end of life in patients with dementia
- Conditions
- Dementiamajor neurocognitive disorder10042258
- Registration Number
- NL-OMON54818
- Lead Sponsor
- eids Universitair Medisch Centrum
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Completed
- Sex
- Not specified
- Target Recruitment
- 80
The person with dementia:
• has a diagnosis of irreversible dementia established by a physician
• has been informed about and is aware of his or her diagnosis
• has a family caregiver (spouse, friend, partner, daughter/son, etc.) who is
willing to participate in the study
• has decision making capacity and is able to communicate through sufficient
memory and language
• has sufficient capacity of the Dutch or English language to participate in
the interview
• is able to understand and sign the consent form
• has adequate vision and hearing (can be achieved by using corrective lenses
and hearing aid if required)
• consents to participate.
The family caregiver:
• is willing and able to participate in the study
• the person with dementia they care for is willing and able to participate
• is at least 18 years old
• has sufficient capacity of the Dutch or English language to participate in
the interview
• consents to participate.
The physician:
• practices a specialty that includes provision of end-of-life care for
individuals living with dementia
• is willing and able to participate in the study
• consents to participate.
• The person with dementia is currently affected by a severe psychiatric
disorder (e.g., major depression, schizophrenia, substance abuse, PTSD) as
diagnosed by a psychiatrist, psychologist, or physician.
• The person is expected to die in a few weeks
Study & Design
- Study Type
- Observational non invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method <p>The primary outcome is acceptability (i.e., whether the participants would want<br /><br>the interventions at the end of life; patients for themselves, family<br /><br>caregivers for their loved one, and whether physicians would use it at<br /><br>request). Do not know will be a valid response option. </p><br>
- Secondary Outcome Measures
Name Time Method <p>Differences in acceptability between types of interventions, group (role),<br /><br>countries will be investigated, and also, in an explorative manner,<br /><br>associations with other characteristics. Open-ended questions in the interviews<br /><br>will be used to examine, in a qualitative manner, possible ambiguity regarding<br /><br>being in control through the interventions, and as to why and in what situation<br /><br>the respondent feels the interventions are acceptable.</p><br>