Title of project or programme
Title of PINeeds in Young onset Dementia (Need-YD)
Principal Investigators of project/programme grant
dr.Marjoleinde VugtAlzheimer Centrum LimburgNetherlands
Netherlandsprof. dr.RaymondKoopmansAlzheimer Centrum Nijmegen
prof. drFransVerheyAlzheimer Centrum LimburgNetherlands
prof. dr.MyrraVernooy-DassenAlzheimer Centrum NijmegenNetherlands
dr.YolandaPijnenburgAlzheimercentrum VUmcNetherlands
Address of institution of lead PI
InstitutionMaastricht University / Alzheimer Center Limburg
Street Addressdr. Tanslaan
  • Netherlands
Source of funding information

Dutch Alzheimer’s Association (Azheimer Nederland)

Total sum awarded (Euro)


Start date of award

Early onset dementia has serious consequences for patients and their family members. Although there has been growing attention for this patient group, health care services are still mainly targeted at the elderly. Specific knowledge of the needs of early onset dementia patients and their families is limited but necessary for the development of adequate health care services and specific guidelines. This research project is mainly targeted at delineating the course of early onset dementia, the functional characteristics and needs of early onset dementia patients and their caregivers, the risk factors for institutionalization and the interaction with the caring environment.
The NeedYD-study (Needs in Young Onset Dementia) is a longitudinal observational study investigating early onset dementia patients and their caregivers (n = 217). Assessments are performed every six months over two years and consist of interviews and questionnaires with patients and caregivers. The main outcomes are (1) the needs of patients and caregivers, as measured by the Camberwell Assessment of Needs for the Elderly (CANE) and (2) neuropsychiatric symptoms, as measured by the NeuroPsychiatric Inventory (NPI). Qualitative analyses will be performed in order to obtain more in-depth information on the experiences of EOD patients and their family members. The results of this study will be compared with comparable data on late onset dementia from a historical cohort.

Total duration of award in months


The project/programme is most relevant to
  • Alzheimer’s disease and other dementias

Young onset dementia
Behavioural problems

Research abstract in English


Lay Summary
In which category does this research fall?
  • Health and social care research

    Types: Investments > €500k
    Member States: Netherlands
    Diseases: Alzheimer's disease & other dementias
    Years: 2011
    Database Categories: N/A
    Database Tags: N/A

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