Researchers from the Netherlands recently published an article on patients’ and families’ views on genetic testing for familial dementia in the Alzheimer’s & Dementia journal. Among 138 patients eligible for genetic testing at the Alzheimer Center Amsterdam, 75 (54 percent) decided to undergo testing. Testers were more likely to have better cognitive performance, higher quality of life scores and an undetermined diagnosis. Researchers used a mixed-methods approach, combining clinical data from 519 patients with qualitative data from 33 questionnaires and 21 interviews. They found that patients’ decisions were guided less by factual information and more by intuitive, value-driven reasoning. Testers often wanted to clarify the cause of symptoms and provide information to relatives. Non-testers highlighted concerns about emotional distress and poor timing. Across all groups, participants expressed a need for more information and support in decision-making. The authors concluded that genetic testing is of interest to many families and that its potential psychosocial effects require further attention in dementia care. The article has been published open access and can be read here: https://doi.org/10.1002/alz.70140
Patients and families describe motives for and against genetic testing in familial dementia
10/07/2025