Family planning with familial Alzheimer’s genetics

When Alzheimer’s disease runs in the family, planning for the future takes on a whole new dimension.

For the FAD community, family planning isn't just about timing or personal readiness. It’s also about making informed, proactive decisions that consider genetic risks, caregiving realities, and participation in medical research.

Whether you’re thinking about having children, exploring genetic testing, or considering a clinical trial, understanding your options will help you make informed reproductive and family planning decisions that are right for your family.

Why is family planning important in families with FAD genetics?

There are several reasons family planning may be important to people in this community.

Risk of passing on the mutation

FAD is caused by genetic mutations that follow an autosomal dominant inheritance pattern. This means that a parent with one of these mutations has a 50% chance of passing it on to their child. This risk can heavily influence decisions around family planning.

Prospective parents with a family history of FAD may choose to undergo genetic testing to determine whether they carry the mutation. This information can guide them in planning—whether they decide to have children naturally, consider preimplantation genetic diagnosis (PGD) during IVF to select embryos without the mutation, or explore options like adoption.

There are even IVF options that enable people to avoid passing on a potential genetic mutation without needing to learn their own genetic status.

Impact on caregiving and life planning

FAD is often associated with early-onset Alzheimer's disease, which can begin in a person's 30s, 40s, or 50s. These are prime years for parenting responsibilities in many families. Family planning allows people to consider the implications of potentially developing symptoms during parenthood, and to prepare accordingly, both emotionally and financially.

Participation in clinical trials

Another important aspect of family planning for individuals at risk for FAD is the potential impact on clinical trial eligibility.

Many clinical trials, especially those involving experimental treatments or early-phase drug testing, prohibit participants from becoming pregnant during the trial. This is due to unknown effects that investigational drugs might have on a developing fetus, among other reasons. For those who consider participating in these trials—either as carriers of the mutation or as part of preventative research—it's crucial to factor in how family planning decisions may affect their ability to enroll or remain in a study.

Options for family planning

Many families have children without knowing they have a genetic mutation for Alzheimer’s in the family, but some families have an opportunity to plan with this knowledge in mind.

Families with FAD genetics have many family planning options to consider, including:

• Natural pregnancy

• Natural pregnancy with prenatal testing: Genetic testing of fetus at 11-22 weeks of gestation

• Freezing eggs or sperm: Saving eggs or sperm before a clinical trial to extend one’s window of fertility, allowing time to participate in a clinical trial.

• IVF with preimplantation genetic testing (PGT): Retrieving, testing, and implanting embryos that have been screened and do not have a FAD mutation.

• IVF with surrogate or gestational carrier: Another person carries your baby, allowing you to grow your family even while participating in a clinical trial.

• Egg or sperm donation: Use donor egg or sperm in place of FAD partner.

• Adoption: Raise a non-biological child

• Child-free: Choosing not to have a child

The DIAN Fertility Guide provides details on what each of these options means in terms of risks, time, cost, and other considerations.