To examine the cross-cultural acceptability of four interventions in dementia care that typically aim to increase control over the end of life among people with dementia, and family and professional caregivers. Differences in acceptability between…
ID
Source
Brief title
Condition
- Structural brain disorders
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
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 outcome
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.
Background summary
Dementia is one of the public health top-priorities. The illness has a great
impact on both the people who have it and their caregivers. Interventions that
meet needs of people with dementia and their caregivers are needed. In dementia
at the end of life, cognitive and physical decline imply that control is
typically lost. This study will examine the acceptability of four end-of-life
interventions in dementia which contain an element of striving for control. We
purposefully selected four interventions (i.e., two types of advance care
planning, use of technology, and euthanasia), three groups with different roles
and six countries, because we expect acceptability to differ within these
dimensions. We will explore if and which demographic and personality
characteristics, and variables indicating life view are associated with
acceptability of the interventions.
Study objective
To examine the cross-cultural acceptability of four interventions in dementia
care that typically aim to increase control over the end of life among people
with dementia, and family and professional caregivers. Differences in
acceptability between types of interventions, group (role), and countries will
be investigated. We will explore as to why and in what situation participants
feel the interventions are acceptable. Exploratory analyses will test
associations with demographic and personality characteristics and life view.
Study design
Mixed-methods study design comprising a single measurement where participants
will be interviewed (open-ended questions for qualitative data) and complete a
questionnaire (quantitative data). The analysis of qualitative data and
quantitative data will be integrated.
Study burden and risks
Participation entails a one-hour-assessment. There is a minimal risk of
participants becoming upset by the sensitive nature of the questions and
fatigue due to the assessment.
Hippocratespad 21
Leiden 2300 RC
NL
Hippocratespad 21
Leiden 2300 RC
NL
Listed location countries
Age
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
• 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
Recruitment
metc-ldd@lumc.nl
metc-ldd@lumc.nl
metc-ldd@lumc.nl
metc-ldd@lumc.nl
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
Register | ID |
---|---|
CCMO | NL72354.058.19 |
Other | NL7985 |