Deciding on genetic testing for familial dementia: Perspectives of patients and families
Half of memory clinic patients' who met eligibility criteria proceeded with genetic testing. Those tested were more likely to have an undetermined diagnosis, better cognition, and higher quality of life. Decisions were motivated less by deliberation of factual information, and more by quick, intuitive judgments. Motivations pro included providing information, enhancing actionability, and resolving uncertainty. Motivations con comprised concerns about the emotional burden and disruptive impact on their family.
Authors
- Eva C. A. Asscher (ORCID: https://orcid.org/0000-0001-8471-370X)
- Leonie N.C. Visser (ORCID: https://orcid.org/0000-0003-3487-7938)
- Wiesje M. van der Flier (ORCID: https://orcid.org/0000-0001-8766-6224)
- Annelien L. Bredenoord (ORCID: https://orcid.org/0000-0002-7542-8963)
- Sven J. van der Lee (ORCID: https://orcid.org/0000-0003-1606-8643)
- Christa M. de Geus (ORCID: https://orcid.org/0000-0002-7996-056X)
- Jetske van der Schaar (ORCID: https://orcid.org/0000-0002-9155-7490)
- Mariëtte van den Hoven (ORCID: https://orcid.org/0000-0003-1416-0972)
- Ellen M.A. Smets (ORCID: https://orcid.org/0000-0002-8145-8595)
- Yolande A.L. Pijnenburg (ORCID: https://orcid.org/0000-0003-2464-1905)
Institutions
- Utrecht University (NL)
- University Medical Center Utrecht (NL)
- Amsterdam Neuroscience (NL)
- GGD Amsterdam (NL)
- Amsterdam University Medical Centers (NL)
- Vrije Universiteit Amsterdam (NL)
- Erasmus University Rotterdam (NL)
Publication Details
- Journal
- Alzheimer s & Dementia
- Published
- 2025-04-01
- DOI
- https://doi.org/10.1002/alz.70140
- Citations
- 2
- Primary Topic
- Genomics and Rare Diseases
- Type
- article
- Field-Weighted Citation Impact
- 3.63
Funders
- ZonMw
- Nederlandse Organisatie voor Wetenschappelijk Onderzoek
- Stichting Dioraphte
- Alzheimer Nederland
- Amsterdam Neuroscience