Abstract
The disease trajectory and healthcare requirements of patients with young-onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE-GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patients with YOD in memory clinics in the Netherlands. The national database includes data from dementia patients aged <70 years at diagnosis, collected by local memory clinics (MCs). Data included demographic information, clinical variables, and (etiological) diagnoses. Between July 2019 and December 2022, 781 patients with a mean age of 62±6y at diagnosis (range 37 to 69y) were included from 39 MCs. Most (n = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, n = 87, 11%) were youngest (61±6.0y). Over half (55%) of patients were experiencing symptoms for ≥2 years. We initiated a Dutch national YOD database to improve diagnosis and care for this underrepresented and vulnerable patient group. The database provides a basis for future in-depth studies on YOD.
| Original language | English |
|---|---|
| Article number | e12471 |
| Journal | Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring |
| Volume | 15 |
| Issue number | 3 |
| DOIs | |
| Publication status | Published - 1 Jul 2023 |
Keywords
- care
- diagnosis
- register
- young-onset dementia
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In: Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring, Vol. 15, No. 3, e12471, 01.07.2023.
Research output: Contribution to journal › Article › Academic › peer-review
TY - JOUR
T1 - Young-onset dementia in memory clinics in the Netherlands
T2 - Study design and description of PRECODE-GP
AU - van Gils, Aniek M.
AU - Rhodius-Meester, Hanneke F. M.
AU - Leeuwis, Anna E.
AU - Handgraaf, D. dé
AU - Bakker, Christian
AU - Peetoom, Kirsten
AU - Bouwman, Femke H.
AU - Pijnenburg, Yolande A. L.
AU - Papma, Janne M.
AU - Hoogendoorn, Tanja-Anne
AU - Schoonenboom, Niki
AU - van Strien, Astrid
AU - Verwey, Nicolaas A.
AU - Köhler, Sebastian
AU - de Vugt, Marjolein E.
AU - van der Flier, Wiesje M.
N1 - Funding Information: The authors would like to thank the PRECODE project team for their suggestions and collaboration. Research of the Alzheimer's Center Amsterdam is part of the neurodegeneration research program of Amsterdam Neuroscience. The Vrije Universiteit Medical Center Alzheimer Center is supported by the Stichting Alzheimer Nederland and Stichting Vrije Universiteit Medical Center Fonds. The chair of W.F. is supported by the Pasman Stichting. W.F. is recipient of ABOARD, which is a public–private partnership receiving funding from ZonMW (number 73305095007) and Health‐Holland, Top Sector Life Sciences and Health (public–private partnership allowance; number LSHM20106). H.R.M. is recipient of the Memorabel Dementia Fellowship 2021 (ZonMw project number 10510022110004) and Alzheimer Nederland InterACT grant (project number WE.08‐2022‐06). N.S. is recipient of a grant from the Maria Stichting in Haarlem. NV is recipient of MODEM (number; 10510032120006). Y.P. is recipient of YOD‐MOLECULAR (NWO project number KICH1.GZ02.20.004). The PRECODE‐GP governance body attendees are as follows. Steering committee: Tanja‐Anne Hoogendoorn, Astrid van Strien, Femke Bouwman, Janne Papma, Marlojein de Vugt, Christian Bakker, Marco Blom. Scientific advisory board: Yolande Pijnenburg, Niki Schoonenboom, Harro Seelaar, Nicolaas Verwey, Sebastian Köhler. Privacy committee: Evert‐Ben van Veen. Executive committee: Wiesje van der Flier, Hanneke Rhodius‐Meester, Aniek van Gils. We would like to thank all participating clinicians for their contribution to the PRECODE‐GP database: Admiraal de Ruyter Hospital: Esther Korf; Alrijne Hospital: Paulien Doorlag; Alzheimer Center Erasmus Medical Center: Hanna Bodde, Romy de Haan; Alzheimer Center Groningen: Tineke van Lingen, Fransje Reesink; Alzheimer Center Limburg: Kirsten Peetoom; Amphia Hospital: Anja van Loon, Karin Kraus, Casper van Oers; Antonius Hospital: Maaike Wattel, Ria Meijer, Corrie Boonstra, Jeroen Krijnsen; Bernhoven: Wendy Wittenberg, Heidi Peters, Bregje Raap‐ van Sleuwen, Marieke Huisman‐ Baron, Marleen van den Berg; Catharina Hospital: Angélique Gruters, Inge van Uden; Center for Internal Geriatric Medicine Amsterdam, Amsterdam University Medical Centers: Sara van de Schraaf; Elisabeth TweeSteden Hospital, Tilburg, department of Geriatrics: Loes Valckx; Elisabeth TweeSteden Hospital, Tilburg, department of Neurology: Gerwin Roks; Franciscus Gasthuis & Vlietland: Jan Driesen, Marga van Buitenen, Noor Godijn, Dirk Saal; Gelre Ziekenhuizen, Apeldoorn & Zutphen: Marianne van Nistelrooij, Petra Spies; Het van Weel‐Bethesda Hospital: Lilian Vroegindeweij; Isala hospitals: Lonneke Buitenhuis, Conny de Langen; Jeroen Bosch Hospital: Astrid van Strien, Barbara Hagemeijer—van Tol; LangeLand Hospital: Annemieke Schipper, Mariska Kleijer; Maasziekenhuis Pantein: Monique Sleegers, Miranda Bakker; Martini Hospital department of Geriatrics: Suzan Hentzen; Martini Hospital department of Neurology: Mariette Bos; Medisch Centrum Leeuwarden: Sieta van der Weide, Liesbeth Hempenius; Nij Smellinghe Hospital: Sanne Timmermans, Anna Postma; Ommelander Hospital: Henrike Spanhaak‐van der Weerd, Jorna Greven, Fransje Reesink; Radboud Alzheimer Center: Rianne de Heus, Jurgen Claassen; Reinier de Graaf Hospital: Marlijn de Beer; Rivierenland: Esther van Mil, Jooske Boomsma; Rijnstate, department of Geriatrics: Renate Pol, Diana Taekema; Rijnstate, department of Neurology: Judith Schouten; Rode Kruis Hospital: Jeanine Schukking, Simone Moeskops, Janneke Duits; Slingeland Hospital, department of Geriatrics: Sabrine Wolst; Spaarne Hospital: Niki Schoonenboom, Havin Bozbey, Désirée Zandstra, Brenda Timmermans, Marije van Beek, Angela van der Putten; Tjongerschans: Paulien Stollmeijer, Simon van den Bogaard; Zaans Medical Center: Marieke de Graaf; ZorgSaam Hospital: Pinar Canavar Bayram; Zuyderland Medical Center: Tiny Simons‐Sporken, Erik Hoff. This study was supported by the Gieskes‐Strijbis foundation, Alzheimer Netherlands, and the Dutch Young‐onset Dementia Knowledge Centre. Funding Information: H.R.M. performs contract research for Combinostics; all funding is paid to her institution. C.B. received grants from the Dutch Alzheimer Society, Gieskes Strijbis fund and the Dutch Young‐onset Dementia Knowledge Study during the course of the study. All funds were paid to his institution. K.P. received grants from Alzheimer Netherlands, Gieskes‐Strijbis Fund, and Dutch Knowledge Center Young Onset Dementia during the conduct of the study. All funding is paid to her institution. F.B. is chair of the Dutch Memory Clinic Network. F.B. has a collaboration contract with Biogen, Optina Dx, Optos, and Roche. Payments are made to the institution of VUMC. N.V. received funds from Het Medisch Specialistisch Bedrijf—Vrijgevestigd Collectief Leeuwarden/Medisch Centrum Leeuwarden and is member of the MODEMproject (ZonMW #10510032120006). M.d V. reported receiving grants from Alzheimer Netherlands, Gieskes‐Strijbis Fund, and Dutch Knowledge Center Young Onset Dementia during the conduct of the study. All funding is paid to her institution. W.F. performs contract research for Biogen. Research programs of W.F. have been funded by ZonMW, NWO, EU‐FP7, EU‐JPND, Alzheimer Nederland, CardioVascular Onderzoek Nederland, Health∼Holland, Topsector Life Sciences & Health, stichting Dioraphte, Gieskes‐Strijbis fonds, stichting Equilibrio, Pasman stichting, stichting Alzheimer & NeuroPsychiatry Foundation, Philips, Biogen MA Inc, Novartis‐NL, Life‐MI, AVID, Roche BV, Fujifilm, Combinostics. W.F. holds the Pasman chair. W.F. is recipient of ABOARD, which is a public–private partnership receiving funding from ZonMW (#73305095007) and Health∼Holland, Topsector Life Sciences & Health (PPP‐allowance; #LSHM20106). W.F. has performed contract research for Biogen MA Inc, and Boehringer Ingelheim. W.F. has been an invited speaker at Boehringer Ingelheim, Biogen MA Inc, Danone, Eisai, WebMD Neurology (Medscape), Springer Healthcare. W.F. is consultant to Oxford Health Policy Forum CIC, Roche, and Biogen MA Inc. W.F. participated in advisory boards of Biogen MA Inc and Roche. All funding is paid to her institution. W.F. was associate editor of in 2020/2021. W.F. is associate editor at Brain. A.G. reports no conflicts of interest. All other authors reported no conflicts of interest. Author disclosures are available in the supporting information . Alzheimer's Research & Therapy Publisher Copyright: © 2023 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.
PY - 2023/7/1
Y1 - 2023/7/1
N2 - The disease trajectory and healthcare requirements of patients with young-onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE-GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patients with YOD in memory clinics in the Netherlands. The national database includes data from dementia patients aged <70 years at diagnosis, collected by local memory clinics (MCs). Data included demographic information, clinical variables, and (etiological) diagnoses. Between July 2019 and December 2022, 781 patients with a mean age of 62±6y at diagnosis (range 37 to 69y) were included from 39 MCs. Most (n = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, n = 87, 11%) were youngest (61±6.0y). Over half (55%) of patients were experiencing symptoms for ≥2 years. We initiated a Dutch national YOD database to improve diagnosis and care for this underrepresented and vulnerable patient group. The database provides a basis for future in-depth studies on YOD.
AB - The disease trajectory and healthcare requirements of patients with young-onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE-GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patients with YOD in memory clinics in the Netherlands. The national database includes data from dementia patients aged <70 years at diagnosis, collected by local memory clinics (MCs). Data included demographic information, clinical variables, and (etiological) diagnoses. Between July 2019 and December 2022, 781 patients with a mean age of 62±6y at diagnosis (range 37 to 69y) were included from 39 MCs. Most (n = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, n = 87, 11%) were youngest (61±6.0y). Over half (55%) of patients were experiencing symptoms for ≥2 years. We initiated a Dutch national YOD database to improve diagnosis and care for this underrepresented and vulnerable patient group. The database provides a basis for future in-depth studies on YOD.
KW - care
KW - diagnosis
KW - register
KW - young-onset dementia
UR - http://www.scopus.com/inward/record.url?scp=85168446740&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/dad2.12471
DO - https://doi.org/10.1002/dad2.12471
M3 - Article
C2 - 37609004
SN - 2352-8729
VL - 15
JO - Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring
JF - Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring
IS - 3
M1 - e12471
ER -