Dementia major neurocognitive disorder
Conditions
Interventions
None listed
Sponsors
Leids Universitair Medisch Centrum
Eligibility
Age
65 Years to 99 Years
Inclusion criteria
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 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.
Exclusion criteria
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome is acceptability (i.e., whether the participants would want the interventions at the end of life; patients 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
| Measure | Time frame |
|---|---|
| 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. | — |
Countries
Netherlands
Outcome results
None listed