Lay summary by Shanice Allen, reviewed by Ian Coldicott and a Dementia lay panel
Background
The brain is divided into four main areas called lobes: frontal, parietal, temporal, and occipital. Each lobe has a specific function. Frontotemporal dementia (FTD) is a type of dementia that mainly affects the front (frontal lobe) and sides (temporal lobe) of the brain, it can have a big impact on a person’s life causing changes in behaviour and how a person speaks or understands language and affecting their ability to parent.
Familial frontotemporal dementia (fFTD) is a form of frontotemporal dementia that runs in families and is passed down through genes. People who have a parent with fFTD can have a test to look at their genes to see if they are at risk too. This can shape how they feel about having children, since they might pass on the condition or struggle with caring for family members.
Why is the study important?
Since fFTD can run in families, it’s important to understand how people feel about their risk and the choices they make about having children. This study looks at how past experiences with affected family members, personal views on risk, and decisions about having children are connected, as these things can influence how people at risk for fFTD think about starting a family.
What did the authors do and how did they do it?
The authors carried out interviews with 13 individuals who have a parent or sibling with fFTD meaning they were at-risk for fFTD to understand their views on reproductive decision-making. The interviews were analysed using a technique called thematic analysis which is a way of finding patterns in words and ideas. For example, if many people talk about family, holidays, or school in their stories, those are themes. This helps researchers understand what people are saying more easily.
What are the results?
Participants were worried about developing fFTD after seeing its impact on relatives. This led them to take steps to reduce its effect on themselves and their children. Some participants had a desire to end fFTD transmission which either encouraged them to not have children or consider other options such as reproductive genetic testing or adoption. Everyone felt that knowing their risk was important but also difficult at times, as it influenced how they planned their future. Many participants, whether they had children or not, felt pressure to make decisions about having children sooner because of their risk. They often used their relative’s age when symptoms started as a “deadline” for when they would need to become parents. Some decided not to have children at all if they passed this age without having them.
Most people, whether they had children or not, found the idea of telling their children about fFTD risk very difficult and wanted more support. For some, this challenge played a role in their decision not to have children.
What do the findings mean going forward for people with the disease?
Findings show that people with a family history of fFTD have a variety of factors to take in when making the choices around having children. These findings can be used to guide genetic counselling practices. People with a family history of fFTD need more information around other ways to have children i.e. reproductive genetic testing options and need better access to support with family communication as many people in the study found this difficult.
Instead of just having counselling before genetic testing, people might need support at different times, like when deciding whether to have children and when telling their children about fFTD risk. Many people in the study also found that planning ahead helped them feel less worried. Healthcare centres could offer more help with this.
This study can be found at
https://onlinelibrary.wiley.com/doi/10.1002/jgc4.2000
Paper title
The experience of “at-risk” status for familial frontotemporal dementia (fFTD) and its impact on reproductive decision-making: A qualitative study
Lead author
Neil Fahy & Joshua Stott
Publication details including date of publication
Journal of Genetic Counselling in January 2025