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Open Access Study protocol

Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia

Deliane van Vliet1, Christian Bakker23, Raymond TCM Koopmans3, Myrra JFJ Vernooij-Dassen45, Frans RJ Verhey1 and Marjolein E de Vugt1*

Author Affiliations

1 School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands

2 Florence, Mariahoeve, Center for Specialized Care in Early Onset Dementia, Den Haag, the Netherlands

3 Department of Primary and Community Care: Center for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands

4 Scientific Institute for Quality of Healthcare/Alzheimer Center Nijmegen, Radboud University Nijmegen, Medical Centre, Nijmegen, The Netherlands

5 Kalorama Foundation, Beek-Ubbergen, the Netherlands

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BMC Geriatrics 2010, 10:13  doi:10.1186/1471-2318-10-13

Published: 12 March 2010

Abstract

Background

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.

Methods/Design

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.

Discussion

The study protocol of the NeedYD-study is presented here. To our knowledge, this study is the first prospective cohort study in this research area. Although some limitations exist, these do not outweigh the strong points of this study design.