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Care for People with Young Onset Dementia towards the End of Life

Care for People with Young Onset Dementia towards the End of Life - Care4Youngdem

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
NL-OMON
Registry ID
NL-OMON48701
Enrollment
36
Registered
2019-08-14
Start date
2019-12-09
Completion date
Unknown
Last updated
2024-04-15

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Young-onset dementia

Interventions

None listed

Sponsors

Radboud Universitair Medisch Centrum
Lead Sponsor

Eligibility

Age
18 Years to 99 Years

Inclusion criteria

Inclusion criteria: (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.

Exclusion criteria

Exclusion criteria: -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)

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)