Care for People with Young Onset Dementia towards the End of Life
- Conditions
- Young-onset dementiaearly-onset dementia10042258
- Registration Number
- NL-OMON48701
- Lead Sponsor
- Radboud Universitair Medisch Centrum
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Completed
- Sex
- Not specified
- Target Recruitment
- 36
(Individual interviews)
Person with dementia (about 10)
- Both the person with dementia and the family caregiver consent to participate in the interview
- Young-onset dementia (symptoms before age 65)
- Community dwelling
- Mild or moderate dementia according to the professional caregiver who asks the patient and the family caregiver to participate in the research, guided by the Dementia Severity Rating Scale
-Capable and prepared to reflect on their personal situation, illness, care, preferences and possible future developments. For this, awareness of the disease is needed, at least to some extent.;Family caregivers (generally healthy participants, also about 10)
-Being the person's main family caregiver, either living with the person with dementia or living apart;Group interviews
Professional caregivers (a total of about 16 in two or more group interviews): see Interview protocol.
-Alcohol-related dementia, Korsakov dementia, dementia with Down syndrom, Huntington and acquired brain injury in the person with dementia
- Severe aphasia or communication disorder on part of the person with dementia or the family caregiver
-Objections to talk about the past (to reflect on the period since diagnosis until the time of the interview) on part of the person with dementia or their family caregiver.
Physically incapable of signing (in case the study is regarded to fall within the scope of the WMO regulation)
Study & Design
- Study Type
- Observational non invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method