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The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study

Published online by Cambridge University Press:  04 September 2013

Christian Bakker ,
Marjolein E. de Vugt ,
Deliane van Vliet ,
Frans R.J. Verhey ,
Yolande A. Pijnenburg ,
Myrra J.F.J. Vernooij-Dassen  and
Raymond T.C.M. Koopmans
Christian Bakker*
Affiliation:
Florence, Mariahoeve, Centre for Specialized Care in Early Onset Dementia, the Hague, the Netherlands Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands
Marjolein E. de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, the Netherlands
Deliane van Vliet
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, the Netherlands
Frans R.J. Verhey
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, the Netherlands
Yolande A. Pijnenburg
Affiliation:
Alzheimer Center and Department of Neurology, Amsterdam, the Netherlands
Myrra J.F.J. Vernooij-Dassen
Affiliation:
Alzheimer Centre Nijmegen, Centre for Quality of Care Research, Nijmegen, the Netherlands Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands Scientific Institute for Quality of Healthcare, Radboud University Nijmegen, Medical Center, Nijmegen, the Netherlands Kalorama Foundation, Beek-Ubbergen, the Netherlands
Raymond T.C.M. Koopmans
Affiliation:
Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands
*
Correspondence should be addressed to: Christian Bakker, MSc, PhD, Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, P.O. Box 9101, Code 117 ELG, 6500 HB Nijmegen, the Netherlands. Phone: +31 70 7546580; Mobile: +31 6 52324892; Fax: +31 70 7546699. Email: [email protected].
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Abstract

Background:

Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.

We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.

Methods:

A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.

Results:

Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.

Conclusions:

Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.

Keywords

early onset dementiacare needsneuropsychiatric symptoms
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Special Issue 12: young onset dementia , December 2014 , pp. 1991 - 2000
Copyright
Copyright © International Psychogeriatric Association 2013 

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