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Survival and life-expectancy in a young-onset dementia cohort with six years of follow-up: the NeedYD-study

Published online by Cambridge University Press:  27 March 2019

Adrie A.J. Gerritsen ,
Christian Bakker ,
Frans R.J. Verhey ,
Yolande A.L. Pijnenburg ,
Joany K. Millenaar ,
Marjolein E. de Vugt  and
Raymond T.C.M. Koopmans
Adrie A.J. Gerritsen*
Affiliation:
De Wever, Centre for Elderly Care, Tilburg, the Netherlands Department of Primary and Community Care, Radboud University Medical Centre, Radboud Institute for Health Sciences, Nijmegen, the Netherlands Radboud University Medical Centre, Alzheimer Centre, Nijmegen, the Netherlands
Christian Bakker
Affiliation:
Department of Primary and Community Care, Radboud University Medical Centre, Radboud Institute for Health Sciences, Nijmegen, the Netherlands Radboud University Medical Centre, Alzheimer Centre, Nijmegen, the Netherlands Florence, Mariahoeve, Centre for Specialized Care in Young-onset Dementia, Den Haag, the Netherlands
Frans R.J. Verhey
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre, Maastricht, the Netherlands
Yolande A.L. Pijnenburg
Affiliation:
Department of Neurology and Alzheimer Centre, Amsterdam University Medical Centres, Amsterdam Neuroscience, Amsterdam, the Netherlands
Joany K. Millenaar
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre, Maastricht, the Netherlands
Marjolein E. de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre, Maastricht, the Netherlands
Raymond T.C.M. Koopmans
Affiliation:
Department of Primary and Community Care, Radboud University Medical Centre, Radboud Institute for Health Sciences, Nijmegen, the Netherlands Radboud University Medical Centre, Alzheimer Centre, Nijmegen, the Netherlands Joachim en Anna, Centre for Specialized Geriatric Care, Nijmegen, the Netherlands
*
Correspondence should be addressed to: Adrie A.J. Gerritsen, MD, Department of Primary and Community Care, Radboud University Medical Centre, code 117 ELG, PO Box 9101, 6500 HB Nijmegen, the Netherlands. Phone: +31 (0)13 4644166, Fax: +31 (0)13 4644433. Email: [email protected].
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Abstract

Objectives:

The aim of this study was to investigate survival time and life-expectancy in people with young-onset dementia (YOD) and to examine the relationship with age, sex, dementia subtype and comorbidity.

Design, Setting and Participants:

Survival was examined in 198 participants in the Needs in Young-onset Dementia study, including participants with Alzheimer’s dementia (AD), vascular dementia (VaD) and frontotemporal dementia (FTD).

Measures:

The primary outcomes were survival time after symptom onset and after date of diagnosis. Cox proportional hazards models were used to explore the relationship between survival and age, sex, dementia subtype and comorbidity. Additionally, the impact on remaining life expectancy was explored.

Results:

During the six-year follow-up, 77 of the participants died (38.9%), 78 participants survived (39.4%) and 43 were lost to follow-up (21.7%). The mean survival time after symptom onset and diagnosis was 209 months (95% CI 185-233) and 120 months (95% CI 110-130) respectively. Participants with AD had a statistically significant shorter survival compared with VaD participants, both regarding survival after symptom onset (p = 0.047) as well as regarding survival after diagnosis (p = 0.049). Younger age at symptom onset or at diagnosis was associated with longer survival times. The remaining life expectancy, after diagnosis, was reduced with 51% for males and 59% for females compared to the life expectancy of the general population in the same age groups.

Conclusion/Implications:

It is important to consider the dementia subtype when persons with YOD and their families are informed about the prognosis of survival. Our study suggests longer survival times compared to other studies on YOD, and survival is prolonged compared to studies on LOD. Younger age at symptom onset or at diagnosis was positively related to survival but diagnosis at younger ages, nevertheless, still diminishes life expectancy dramatically.

Keywords

Young Onset DementiaDementiaLong-Term Care
Type
Original Research Article
Information
International Psychogeriatrics , Volume 31 , Issue 12: Issue Theme: Assessment of Cognitive Impairment in East Asia , December 2019 , pp. 1781 - 1789
Copyright
© International Psychogeriatric Association 2019 

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