Care4Youngdem: Care for people with Young-Onset Dementia towards the end of life/ Zorg bij dementie op jonge leeftijd

End-of-life care in institutionalized people with Young-Onset Dementia (YOD): the Care4Youngdem study

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON23226

Enrollment

300

Registered

2016-09-08

Start date

2016-10-01

Completion date

Unknown

Last updated

2024-02-28

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

Conditions

Young-onset dementia / Dementie op jonge leeftijd

Interventions

None listed

Eligibility

Inclusion criteria

Inclusion criteria: Patients are included when they: (1) have a clinical diagnosis of dementia according to the diagnostic criteria with first symptom onset before the age of 65 years. (2) provide informed (proxy) consent, and have a primary informal caregiver who is willing to participate in the questionnaire-based survey.

Exclusion criteria

Exclusion criteria: None

Design outcomes

Primary

Measure	Time frame
We partly replicate our Dutch End-of-Life in Dementia (DEOLD) study, a large national cohort study on the course and care-related aspects of institutionalized people with late-onset dementia. Elderly care physicians and family members completed questionnaires covering a broad range of care-related aspects with a special emphasis on palliative care and end-of-life issues. In the DEOLD-study, patients were followed from the time of admission to the time of death or study conclusion, with semi-annual assessments/questionnaires in-between. In the current Care4Youngdem-study we will use a slightly different approach. For reason of feasibility we will only administer questionnaires at inclusion in the study (not necessarily upon admission) and after death of the patients. Furthermore, we will develop questionnaires for nursing staff members, in addition to the questionnaires for elderly care physicians and family-members, since they are important members of the health-care team. We will address all long-term care facilities/organizations that have a specialized young-onset dementia care unit, and ask if they are willing to participate in the study. For feasibility and to reach adequate power for this study, all patients residing on this care unit, as well as patients who are newly admitted during the data collection period, are eligible for inclusion in the study. The greater part of the DEOLD-questionnaires is appropriate for the use in the Care4Youngdem-study. This is important for reason of comparability. However, we carefully reviewed the questionnaires based on existing literature on YOD, methods used in, and results of, our NEEDYD and BEYOND-studies. We have slightly adapted the questionnaires where needed. The questionnaires assess patient characteristics including type of dementia, comorbidity, Activities of Daily Living, and severity of dementia using the Bedford Alzheimer Nursing-Severity Scale (BANS-S) and the Global Deterioration Scale (GDS). Further, it	—

Measure

Time frame

We partly replicate our Dutch End-of-Life in Dementia (DEOLD) study, a large national cohort study on the course and care-related aspects of institutionalized people with late-onset dementia. Elderly care physicians and family members completed questionnaires covering a broad range of care-related aspects with a special emphasis on palliative care and end-of-life issues. In the DEOLD-study, patients were followed from the time of admission to the time of death or study conclusion, with semi-annual assessments/questionnaires in-between. In the current Care4Youngdem-study we will use a slightly different approach. For reason of feasibility we will only administer questionnaires at inclusion in the study (not necessarily upon admission) and after death of the patients. Furthermore, we will develop questionnaires for nursing staff members, in addition to the questionnaires for elderly care physicians and family-members, since they are important members of the health-care team. We will address all long-term care facilities/organizations that have a specialized young-onset dementia care unit, and ask if they are willing to participate in the study. For feasibility and to reach adequate power for this study, all patients residing on this care unit, as well as patients who are newly admitted during the data collection period, are eligible for inclusion in the study. The greater part of the DEOLD-questionnaires is appropriate for the use in the Care4Youngdem-study. This is important for reason of comparability. However, we carefully reviewed the questionnaires based on existing literature on YOD, methods used in, and results of, our NEEDYD and BEYOND-studies. We have slightly adapted the questionnaires where needed. The questionnaires assess patient characteristics including type of dementia, comorbidity, Activities of Daily Living, and severity of dementia using the Bedford Alzheimer Nursing-Severity Scale (BANS-S) and the Global Deterioration Scale (GDS). Further, it

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Contacts

Public ContactJenny T. van der Steen

email: j.vandersteen@vumc.nl

Outcome results