Cross-cultural acceptability of interventions that may increase control at the end of life in people with dementia

Recruitment & Eligibility

Status: Pending

Sex: Not specified

Target Recruitment: 900

Inclusion Criteria

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 local 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 local 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 (depending on the country, the specialty could be primary care physicians such as general practitioners and elderly care physicians, geriatricians, geriatric psychiatrist, neurologists)
•is willing and able to participate in the study
•consents to participate.

Exclusion Criteria

•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
The main outcome is whether the participants want the interventions at the end of life (people with dementia for themselves, family caregivers for their loved one, and whether physicians would use it at request). Do not know will be a valid response option.

Secondary Outcome Measures

Name	Time	Method
Differences in acceptability between types of interventions, group (role), countries will be investigated, and also, in an explorative manner, associations with other characteristics. Open-ended questions in the interviews will be used to examine, in a qualitative manner, possible ambiguity regarding being in control through the interventions, and as to why and in what situation the respondent feels the interventions are acceptable.