A new study led by University College London (UCL) researchers reveals that living in a family with a genetic risk for dementia significantly influences decisions regarding childbearing and parenting. The research, published in the Journal of Genetic Counselling, sheds light on how genetic predisposition to familial frontotemporal dementia (fFTD) affects individuals’ choices about having children, as well as their approach to parenting.
Familial frontotemporal dementia, which typically manifests in mid-life, is marked by changes in behavior and personality. Affected individuals’ children have a 50% chance of inheriting the gene responsible for the condition. The study explored the experiences of 13 participants—both parents and non-parents—who are at risk of developing fFTD.
The study categorized participants into three groups based on their decision to learn about their genetic status: those who opted not to find out, those who tested positive for the gene, and those who tested negative but still lived with the knowledge that others in their family may be affected.
Through in-depth interviews, the researchers discovered several key factors influencing participants’ reproductive decisions:
Fear of Repeating Their Own Experiences: Many individuals were concerned about their own experiences of caring for relatives with fFTD and the possibility of passing on the condition to their children.
Impact on Future Children: The genetic risk for fFTD played a major role in shaping participants’ concerns about the future well-being of potential children.
Timing of Parenthood: The age at which participants hoped to have children was often influenced by the genetic risk and the expected age of onset of symptoms in their families.
Disclosure to Children: Many parents were anxious about how to disclose the genetic risks to their children in a sensitive and understandable way.
Despite these concerns, many participants emphasized the importance of other factors in their decision-making, such as the stability of their relationship, housing situation, and financial security. The genetic risk for dementia was considered within the broader context of these factors, which could either mitigate or amplify the decision-making process.
The study also revealed the practical and emotional challenges faced by individuals who had cared for relatives with fFTD. These included managing complicated medical, care, and legal issues, dealing with difficult behaviors, and the emotional strain of losing a relationship with the affected person. For many, caregiving involved sacrificing their own plans and priorities, leading to feelings of frustration, resentment, and guilt.
A 41-year-old male participant who tested positive for the gene shared his concerns: “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.”
For many participants, the genetic risk of fFTD created a sense of urgency regarding family planning. They often referred to the age at which their affected relatives first showed symptoms as a deadline for making decisions about having children. Some even expressed a reluctance to have children due to the looming possibility of developing symptoms themselves.
A significant challenge for both parents and non-parents was the difficulty of discussing the genetic risk for fFTD with children. Some parents worried that sharing this information could harm the parent-child relationship or lead to disagreements about having children. For those without children, the difficulty of broaching the subject influenced their decision whether to reproduce at all.
Joshua Stott, the study’s senior author and professor at UCL Psychology & Language Sciences, emphasized the importance of understanding the complex and individualized nature of reproductive decision-making in families affected by genetic risk for dementia. He argued that personalized counseling and support are essential in helping individuals make informed decisions regarding family planning, especially when facing the added burden of genetic risk.
“Our study is the first to highlight how the genetic risk of familial frontotemporal dementia impacts reproductive decision-making,” said Stott. “Knowing about the genetic risk, alongside personal values and caregiving challenges, plays a critical role in these decisions.”
The researchers are calling for better access to information and psychological support for individuals facing these difficult choices. They believe that individuals should be guided through their reproductive options in a supportive, non-judgmental environment, ensuring they are well-informed about the emotional and practical implications of their decisions.
The study highlights the importance of resources like the Rare Dementia Support Centre at UCL, which provides holistic support for individuals at risk of fFTD. The center offers a Virtual Support Clinic, as well as peer support groups for gene carriers, to help them navigate their concerns and plan for the future.
Additionally, the researchers advocate for providing people affected by fFTD with access to legal and financial planning resources to help them manage distress and prepare for the future. These resources are essential for ensuring that individuals at risk of dementia have the support they need to make informed decisions about reproduction and care.
Amanda, a 38-year-old woman from Kent, shared her personal experience with genetic risk for fFTD. After learning about her father’s diagnosis in 2012 and her uncle’s diagnosis in 2005, Amanda discovered in 2015 that she carried the gene for the condition. Despite this, Amanda and her husband decided to continue with their plans to have children, feeling that the decision was deeply personal and should not be influenced by others’ opinions.
Amanda reflected on the factors that influenced her decision: “We were aware of the risk, but we didn’t want it to control our lives. We knew there were many other risks in life, and we wanted to live in the moment, not burden ourselves with fear.”
Amanda’s story reflects the complex interplay of factors that contribute to family planning decisions when genetic risk for dementia is involved, and how support from professionals and peers can help individuals navigate this difficult journey.
The findings from this study underscore the profound impact that genetic risk for familial frontotemporal dementia has on reproductive decision-making. The complexity of these decisions—shaped by personal, emotional, and practical factors—highlights the need for personalized support and guidance. Moving forward, researchers and healthcare providers are calling for improved counseling services to help individuals make informed, empowered choices about their reproductive futures while managing the realities of living with genetic risk for dementia.
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