A new study from University College London (UCL) researchers sheds light on how genetic risk for dementia, specifically familial frontotemporal dementia (fFTD), influences decisions around family planning and parenting. The research, published in the Journal of Genetic Counselling, highlights how individuals at risk of fFTD grapple with the impact of genetic inheritance on their personal and family life choices.
The study interviewed 13 individuals, both parents and non-parents, who are at risk of developing fFTD—a form of dementia that typically begins in mid-life and leads to significant behavioral and personality changes. Children of an affected parent have a 50% chance of inheriting the gene responsible for the disease. The participants fell into three groups: those who chose not to undergo genetic testing, those who tested positive for the gene, and those who tested negative but still lived in a family affected by the condition.
Researchers explored participants’ experiences with relatives suffering from symptomatic fFTD, their attitudes toward reproductive decisions, and how the risk of developing the condition influenced their approach to parenting. Key concerns identified through the interviews included:
The fear of experiencing the same symptoms as affected relatives and the desire to avoid passing on the condition to future children.
The emotional and practical implications of the genetic risk, both for themselves and for their potential children.
Timing of parenthood, with many participants feeling a sense of urgency to have children before the onset of symptoms.
The challenge of disclosing the genetic risk to children, especially regarding how to communicate the possibility of inheriting fFTD.
Interestingly, despite the heavy burden of genetic risk, participants considered family planning in the broader context of factors such as relationship stability, housing, financial security, partner’s views, and a desire to maintain their current lifestyle.
The emotional and logistical challenges of caring for a loved one with fFTD were a significant concern for many participants, whether they had children or not. Caring for someone with this form of dementia often involves managing complex medical, legal, and caregiving issues, as well as coping with the emotional toll of witnessing a loved one’s decline. Participants reported feelings of frustration, guilt, and resentment, particularly when they had to forgo their own personal plans to provide care.
One 41-year-old male participant, who tested positive for the fFTD gene, expressed his concern: “Not only would I be passing it on, I’d be dying early, and they’d have to see that—it’d be terrible. So even if I didn’t pass it on, it’d be awful.”
The study also found that many participants felt a sense of urgency to make decisions about having children. They often used the age at which their affected relative first showed symptoms as a “deadline,” thinking they had limited time to become parents before potentially facing cognitive decline themselves. For some, this heightened awareness made them less likely to want to have children.
For those who had children, talking to them about the potential genetic risk posed challenges. Many parents found it difficult to discuss the possibility of passing on fFTD to their children, fearing it could harm their relationship or cause distress. For those without children, this dilemma also played a role in their decision on whether to have children at all.
Common fears expressed included concerns about how to broach the subject with children, whether the children could emotionally handle the news, and how the conversation might affect their relationship with the child. Some also worried that their child might disagree with the decision to have children despite the genetic risk.
The findings from this study underscore the profound impact that genetic risks for dementia can have on family planning and parenting decisions, adding another layer of complexity to the already challenging decision-making process for those at risk of neurodegenerative diseases like fFTD.
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