Journal of Genetic Counseling

, Volume 18, Issue 4, pp 350–356 | Cite as

A Decade of Genetic Counseling in Frontotemporal Dementia Affected Families: Few Counseling Requests and much Familial Opposition to Testing

  • S. R. RiedijkEmail author
  • M. F. N. Niermeijer
  • D. Dooijes
  • A. Tibben
Professional Issues


A decade of genetic counseling of frontotemporal dementia (FTD) affected families has generated two important observations. First, the uptake rate for presymptomatic testing for FTD is low in our department of Clinical Genetics at the Erasmus Medical Center in the Netherlands. Second, FTD at-risk counselees reported substantial familial opposition to genetic testing, which is distinct from the attitude in Huntington Disease affected families. We hypothesize that the low acceptance for FTD genetic counseling is consequential to the familial opposition and explain this within the theoretical framework of separation-individuation. Furthermore, we hypothesize that separation-individuation problems do not similarly influence the acceptance of HD genetic counseling, due to the educative role of the well-organised patient organization for HD in the Netherlands. We offer counseling recommendations that serve to facilitate the individuation of the counselee with respect to the FTD genetic test.


Frontotemporal dementia Genetic counseling Separation-individuation Presymptomatic testing Family opposition 



This paper was supported by the Dutch Research Council (NWO: 940-38-005).

Open Access

This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.


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Copyright information

© The Author(s) 2009

Open AccessThis is an open access article distributed under the terms of the Creative Commons Attribution Noncommercial License (, which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.

Authors and Affiliations

  • S. R. Riedijk
    • 1
    • 2
    Email author
  • M. F. N. Niermeijer
    • 3
  • D. Dooijes
    • 1
  • A. Tibben
    • 4
  1. 1.Department of Clinical GeneticsErasmus Medical CentreRotterdamThe Netherlands
  2. 2.Department of Medical Psychology and PsychotherapyErasmus Medical Centre Rotterdam Section of Clinical GeneticsRotterdamThe Netherlands
  3. 3.Department AnthropogeneticsUniversity Medical Centre Nijmegen–St. RadboudNijmegenThe Netherlands
  4. 4.Centre of Human and Clinical Genetics, and Department NeurologyLUMCLeidenNetherlands

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