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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: adrie.gerritsen@radboudumc.nl.
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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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References

Addona, V., Atherton, J. and Wolfson, D. B. (2012). Testing the assumptions for the analysis of survival data arising from a prevalent cohort study with follow-up. The International Journal of Biostatistics 8, 22.CrossRefGoogle ScholarPubMed
Armstrong, R. A. (2014). Factors determining disease duration in Alzheimer’s disease: a postmortem study of 103 cases using the Kaplan-Meier estimator and Cox regression. BioMed Research International, 2014, 623487.CrossRefGoogle ScholarPubMed
Atkins, E. R., Bulsara, M. K. and Panegyres, P. K. (2012). The natural history of early-onset dementia: the Artemis Project. BMJ Open, 2, e001764.CrossRefGoogle ScholarPubMed
Baptista, M. A. et al. (2016). Quality of life in young onset dementia: an updated systematic review. Trends Psychiatry Psychother, 38, 6–13.CrossRefGoogle Scholar
Barclay, L. L., Zemcov, A., Blass, J. P. and McDowell, F. H. (1985a). Factors associated with duration of survival in Alzheimer’s disease. Biological Psychiatry, 20, 86–93.CrossRefGoogle ScholarPubMed
Barclay, L. L., Zemcov, A., Blass, J. P. and Sansone, J. (1985b). Survival in Alzheimer’s disease and vascular dementias. Neurology, 35, 834–840.CrossRefGoogle ScholarPubMed
Breslow, N. (1974). Covariance analysis of censored survival data. Biometrics, 30, 89–99.CrossRefGoogle ScholarPubMed
Brodaty, H., Seeher, K. and Gibson, L. (2012). Dementia time to death: a systematic literature review on survival time and years of life lost in people with dementia. International Psychogeriatrics, 24, 1034–1045.CrossRefGoogle ScholarPubMed
Carter, J. E., Oyebode, J. R. and Koopmans, R. (2018). Young-onset dementia and the need for specialist care: a national and international perspective. Aging and Mental Health, 22, 468–473.CrossRefGoogle ScholarPubMed
Chang, K. J. et al. (2017). Mortality risk after diagnosis of early-onset Alzheimer’s disease versus late-onset Alzheimer’s disease: a propensity score matching analysis. Journal of Alzheimer’s Disease, 56, 1341–1348.CrossRefGoogle ScholarPubMed
Crowley, J. and Breslow, N. (1984). Statistical analysis of survival data. Annual Review of Public Health, 5, 385–411.CrossRefGoogle ScholarPubMed
Diehl-Schmid, J., Pohl, C., Perneczky, R., Hartmann, J., Forstl, H. and Kurz, A. (2007). [Initial symptoms, survival and causes of death in 115 patients with frontotemporal lobar degeneration]. Fortschritte der Neurologie-Psychiatrie, 75, 708–713.CrossRefGoogle Scholar
Erkinjuntti, T. (1994). Clinical criteria for vascular dementia: the NINDS-AIREN criteria. Dementia, 5, 189–192.Google ScholarPubMed
First, M. B., Frances, A. and Pincus, H. A. (2002). DSM-IV-TR, handbook of differential diagnosis. Arlington, VA: American Psychiatric Publishing, Inc.CrossRefGoogle Scholar
Garcia-Ptacek, S., Farahmand, B., Kareholt, I., Religa, D., Cuadrado, M. L. and Eriksdotter, M. (2014). Mortality risk after dementia diagnosis by dementia type and underlying factors: a cohort of 15, 209 patients based on the Swedish Dementia Registry. Journal of Alzheimer’s Disease, 41, 467–477.CrossRefGoogle ScholarPubMed
Gerritsen, A. A. et al. (2016). Prevalence of comorbidity in patients with young-onset Alzheimer disease compared with late-onset: a comparative cohort study. Journal of the American Medical Directors Association, 17, 318–323.CrossRefGoogle ScholarPubMed
Gerritsen, A. A. J. et al. (2018). The progression of dementia and cognitive decline in a Dutch 2-Year cohort study of people with young-onset dementia. Journal of Alzheimer’s Disease, 63, 343–351.CrossRefGoogle Scholar
Gronning, H., Rahmani, A., Gyllenborg, J., Dessau, R. B. and Hogh, P. (2012). Does Alzheimer’s disease with early onset progress faster than with late onset? A case-control study of clinical progression and cerebrospinal fluid biomarkers. Dementia and Geriatric Cognitive Disorders, 33, 111–117.CrossRefGoogle ScholarPubMed
Hodges, J. R., Davies, R., Xuereb, J., Kril, J. and Halliday, G. (2003). Survival in frontotemporal dementia. Neurology, 61, 349–354.CrossRefGoogle ScholarPubMed
Holland, D., Desikan, R. S., Dale, A. M., McEvoy, L. K. and Alzheimer’s Disease Neuroimaging, I. (2012). Rates of decline in Alzheimer disease decrease with age. PLoS One, 7, e42325.CrossRefGoogle ScholarPubMed
Ientile, L. et al. (2013). Survival rate in patients affected by dementia followed by memory clinics (UVA) in Italy. Journal of Alzheimer’s Disease, 36, 303–309.CrossRefGoogle Scholar
Jacobs, D. et al. (1994). Age at onset of Alzheimer’s disease: relation to pattern of cognitive dysfunction and rate of decline. Neurology, 44, 1215–1220.CrossRefGoogle ScholarPubMed
Jost, B. C. and Grossberg, G. T. (1995). The natural history of Alzheimer’s disease: a brain bank study. Journal of the American Geriatrics Society, 43, 1248–1255.CrossRefGoogle ScholarPubMed
Kane, R. L., Shamliyan, T., Talley, K. and Pacala, J. (2012). The association between geriatric syndromes and survival. Journal of the American Geriatrics Society, 60, 896–904.CrossRefGoogle Scholar
Kaplan, E. L. and Meier, P. (1958). Nonparametric-estimation from incomplete observations. Journal of the American Statistical Association, 53, 457–481.CrossRefGoogle Scholar
Kay, D. W., Forster, D. P. and Newens, A. J. (2000). Long-term survival, place of death, and death certification in clinically diagnosed pre-senile dementia in northern England. Follow-up after 8-12 years. British Journal of Psychiatry, 177, 156–162.CrossRefGoogle ScholarPubMed
Knopman, D. S., Rocca, W. A., Cha, R. H., Edland, S. D. and Kokmen, E. (2003). Survival study of vascular dementia in Rochester, Minnesota. Archives of Neurology, 60, 85–90.CrossRefGoogle ScholarPubMed
Koedam, E. L. et al. (2008). Early-onset dementia is associated with higher mortality. Dementia and Geriatric Cognitive Disorders, 26, 147–152.CrossRefGoogle ScholarPubMed
Lee, M. and Chodosh, J. (2009). Dementia and life expectancy: what do we know? Journal of the American Medical Directors Association, 10, 466–471.CrossRefGoogle ScholarPubMed
McGonigal, G., McQuade, C. A., Thomas, B. M. and Whalley, L. J. (1992). Survival in presenile Alzheimer’s and multi-infarct dementias. Neuroepidemiology, 11, 121–126.CrossRefGoogle ScholarPubMed
McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D. and Stadlan, E. M. (1984). Clinical diagnosis of Alzheimer’s disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer’s Disease. Neurology, 34, 939–944.CrossRefGoogle ScholarPubMed
Milieu, R. (2018). Volksgezondheid Toekomst Verkenning 2018: Een gezond vooruitzicht. (Rijksinstituut voor Volksgezondheid en Milieu. Dutch National Institute for Public Health and the Environment.) Bilthoven. Available at: https://www.rivm.nl/bibliotheek/rapporten/2018-0030.pdf; last accessed August 2018.Google Scholar
Neary, D. et al. (1998). Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology, 51, 1546–1554.CrossRefGoogle ScholarPubMed
Panegyres, P. K. and Chen, H. Y. (2013). Differences between early and late onset Alzheimer’s disease. American Journal of Neurodegenerative Disease, 2, 300–306.Google ScholarPubMed
Perrault, A., Wolfson, C., Egan, M., Rockwood, K. and Hogan, D. B. (2002). Prognostic factors for functional independence in older adults with mild dementia: results from the Canadian study of health and aging. Alzheimer Disease and Associated Disorders, 16, 239–247.CrossRefGoogle ScholarPubMed
Prince, M., Wimo, A., Guerchet, M., Ali, G.C., Wu, Y.T., Prina, M (2016). World Alzheimer Report 2016. London: Alzheimer’s Disease International.Google Scholar
Rait, G., Walters, K., Bottomley, C., Petersen, I., Iliffe, S. and Nazareth, I. (2010). Survival of people with clinical diagnosis of dementia in primary care: cohort study. BMJ, 341, c3584.CrossRefGoogle ScholarPubMed
Rasmusson, D. X., Carson, K. A., Brookmeyer, R., Kawas, C. and Brandt, J. (1996). Predicting rate of cognitive decline in probable Alzheimer’s disease. Brain and Cognition, 31, 133–147.CrossRefGoogle ScholarPubMed
Reisberg, B., Ferris, S. H., de Leon, M. J. and Crook, T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139, 1136–1139.Google ScholarPubMed
Roberson, E. D. et al. (2005). Frontotemporal dementia progresses to death faster than Alzheimer disease. Neurology, 65, 719–725.CrossRefGoogle ScholarPubMed
Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M. and Warren, J. D. (2010). The diagnosis of young-onset dementia. Lancet Neurology, 9, 793–806.CrossRefGoogle Scholar
Stanley, K. and Walker, Z. (2014). Do patients with young onset Alzheimer’s disease deteriorate faster than those with late onset Alzheimer’s disease? A review of the literature. International Psychogeriatrics, 26, 1945–1953.CrossRefGoogle ScholarPubMed
Statline, Statistics Netherlands’ database. (2017a). Available at https://opendata.cbs.nl/statline/#/CBS/nl/dataset/37360ned/table?ts=1543837224473; last accessed 3 December 2018.Google Scholar
Statline, Statistics Netherlands’ database. (2017b). Sterftekansen naar leeftijd, geslacht. Available at https://opendata.cbs.nl/statline/#/CBS/nl/dataset/37360ned/table?ts=1543840176015; last accessed 3 December 2018.Google Scholar
Stokes, L., Combes, H. and Stokes, G. (2015). The dementia diagnosis: a literature review of information, understanding, and attributions. Psychogeriatrics, 15, 218–225.CrossRefGoogle ScholarPubMed
Todd, S., Barr, S., Roberts, M. and Passmore, A. P. (2013). Survival in dementia and predictors of mortality: a review. International Journal of Geriatric Psychiatry, 28, 1109–1124.Google ScholarPubMed
Tschanz, J. T. et al. (2004). Dementia: the leading predictor of death in a defined elderly population: the Cache County Study. Neurology, 62, 1156–1162.CrossRefGoogle Scholar
Ueki, A., Shinjo, H., Shimode, H., Nakajima, T. and Morita, Y. (2001). Factors associated with mortality in patients with early-onset Alzheimer’s disease: a five-year longitudinal study. International Journal of Geriatric Psychiatry, 16, 810–815.CrossRefGoogle ScholarPubMed
van der Vlies, A. E., Koedam, E. L., Pijnenburg, Y. A., Twisk, J. W., Scheltens, P. and van der Flier, W. M. (2009). Most rapid cognitive decline in APOE epsilon4 negative Alzheimer’s disease with early onset. Psychological Medicine, 39, 1907–1911.CrossRefGoogle ScholarPubMed
Vansteelandt, S., Dukes, O. and Martinussen, T. (2017). Survivor bias in Mendelian randomization analysis. Biostatistics, 19, 426–443.CrossRefGoogle Scholar
van Vliet, D., Bakker, C., Koopmans, R. T., Vernooij-Dassen, M. J., Verhey, F. R. and de Vugt, M. E. (2010). Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia. BMC Geriatrics, 10, 13.CrossRefGoogle ScholarPubMed
van Vliet, D. et al. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404.CrossRefGoogle ScholarPubMed
World Health Organization (2012). Dementia: A Public Health Priority. Geneva: World Health Organization.Google Scholar
World Health Organization (2014). International classification of diseases, 10th revison (ICD-10) online (2014 version). Available at: https://www.who.int/classifications/icd/icdonlineversions/en.Google Scholar