Learning that dementia can sometimes run in families can feel confronting. In young-onset dementia, some cases are linked to changes in specific genes, while others are not. Dementia diagnosed before age 65 is more likely to have a genetic component than dementia diagnosed later in life. For example, around 20-30% of people with frontotemporal dementia have an inherited form, and when a causative gene is present, the chance of passing it on may be up to 50%.
When dementia does appear to run in a family, children and siblings may naturally wonder about their own risk. This can raise difficult questions about the future and bring up strong emotions.
Genetic testing can provide answers, but it can also be emotionally challenging. Some people want to know their risk so they can plan ahead, while others prefer not to. Both choices are valid. Speaking with a genetic counsellor can help you understand the potential benefits, limitations, and emotional implications of testing.
The first step is to speak to your GP or the specialist who made the young-onset dementia diagnosis. They may refer you to a genetic counsellor for further discussion. Genetic testing can be complex, as the person living with dementia usually needs to give informed consent. If they are unable to do so due to the severity of symptoms, a substitute decision-maker (such as someone with an enduring Power of Attorney) may sometimes be able to consent on their behalf. Children cannot be tested until they are at least 18 years old and able to make an informed decision themselves.
Historically, many people have chosen not to pursue genetic testing because there were no effective treatments. With the emergence of disease-modifying therapies (see Section 3.6, Medications), this may be changing for some families.
Knowing about genetic risk can also influence major life decisions – around work, finances, obtaining life insurance, relationships, and especially starting a family. Research studies focused on inherited dementias, such as the Dominantly Inherited Alzheimer’s Network (DIAN), may be available. Options like pre-pregnancy testing or IVF with genetic screening may also be considered for those planning to have children.
Whatever the outcome, it’s normal to experience mixed emotions such as relief, fear, anxiety, or even guilt. Emotional support from counselling, peer groups, or trusted family and friends can be just as important as the medical information.
Watch this video which give comprehensive explanations about gene inheritance and genetic testing for dementia. Watch personal stories about getting tested for inherited dementia.
Your children’s risk of getting dementia
- For further information read this article on heritability of dementia
- Watch this video that gives comprehensive information about and guidance on testing
- If you are concerned, make an appointment with the diagnosing doctor or your GP to discuss
Photo: Christopher Campbell via Unsplash.
