One of the most distressing symptoms of FTD is a loss of empathy, which can cause persons diagnosed to become uncharacteristically indifferent towards other people, including loved ones. This loss is often accompanied by a lack of emotional expression, commonly displayed as a flat affect or blank stares.

Family and friends must remember that these behaviors are not intentional, even if the person diagnosed behaves normally in other ways. Loss of empathy in FTD is caused by degeneration of the frontal lobe, the part of the brain that lets us connect with others, understand social norms, and regulate our emotions. A damaged frontal lobe can also lead to behaviors that are indifferent to the feelings of others (such as changing the channel when someone is in the middle of a show) and difficulty reciprocating empathetic gestures. Compounding these symptoms is anosognosia, a common FTD symptom that refers to an inability to recognize one’s own illness.

Approaching Empathy Loss

It is normal for family and friends to feel a sense of loss, frustration, anger, or sadness during the FTD journey. Empathy loss can exacerbate the sense of ambiguous loss that they may already be experiencing. Support is essential, whether through family and friends or resources such as grief counseling or a support group.

Loved ones should continue to connect and empathize with the person living with FTD, while offering as much love and support as they can. Family and friends can work to develop a new way of relating to the person with FTD without expecting the familiar responses they might be used to.

One way to connect is by emphasizing the achievements, career, and interests of the person diagnosed. Try discussing a favorite movie or TV series, joining the person with FTD for a favorite hobby, or sharing photos and souvenirs from a family vacation. Continue involving the person with FTD in celebrations for birthdays, holidays, and other special events to help them stay involved and active in family life. It can also be helpful to decorate the home with more family photos featuring the person diagnosed and memorabilia from their life to highlight positive memories.

Families should try to recognize how empathy loss can cause negative interactions, such as pushing someone out of the way. Use positive approaches to adjust these behaviors, especially in cases where loss of empathy coincides with anosognosia. For example, if the person with FTD shoves others to get to food, try serving them before calling everyone else to eat that includes regular meals, drinks, and activities. You can preempt negative behaviors by ensuring that the needs of the person diagnosed are addressed first where possible.

As FTD progresses, the need to continually adapt to new challenges is crucial in maintaining an empathetic connection with the person diagnosed. Recognize and celebrate unexpected bonding moments with the person diagnosed.

Are you looking for more guidance on loss of empathy in FTD? Issue 13 of AFTD’s Partners in FTD Care explores at length ways to navigate these challenging symptoms.