Providing care for someone living with a condition as complex as FTD poses physical and mental challenges to both professional and family caregivers. In many cases, maintaining a fond emotional connection with the person diagnosed can offer small moments of joy, lightening the strain and stress of caregiving with spontaneous shared smiles, laughter, or hugs. Unfortunately, the person diagnosed may experience a loss of empathy as part of their disease. This can weaken the emotional bonds between caregiver and care recipient, leading to hard feelings and frustration.

Loss of empathy is common in FTD, and is included in the diagnostic criteria for behavioral variant FTD, or bvFTD (Rascovsky et al., 2011). There are two kinds of empathy: emotional empathy refers to the ability to resonate with others’ feelings, while cognitive empathy involves understanding others’ intentions. In FTD, both can be lost.
Although not all people with bvFTD will exhibit a lack of empathy, many will, and it can be one of the earliest presenting symptoms. And when it intersects with other common bvFTD symptoms – disinhibition, apathy, compulsive or ritualistic behavior, hyperorality, dietary changes, deficits in executive function – the result can cause significant damage to relationships, often well before a diagnosis is made.

A loss of empathy is not exclusive to bvFTD. It can appear in persons diagnosed with other FTD subtypes, including primary progressive aphasia (which is characterized by communication difficulties) as well as corticobasal syndrome, progressive supranuclear palsy, or FTD-ALS (each of which impair movement). Symptoms affecting one’s behavior or personality can overlap with communication and/or movement symptoms, regardless of one’s specific diagnosis. As the brain degenerates, the crossover between behavior/personality, communication, and movement difficulties becomes more common.

Before families even begin pursuing a diagnosis, they may notice that their loved one is showing less interest in other people’s feelings. This newfound lack of empathy can be very upsetting and may initially be misinterpreted as a problem in their relationship rather than the result of a neurological disorder. Indeed, compared to other neurodegenerative diseases, persons with bvFTD have the highest frequency of separation, divorce, or infidelity, both during their illness and in the five years preceding disease onset (Takeda et al., 2019).

Personal relationships can be deeply intimate and private. Many families may therefore hesitate to talk openly about their loved one’s behavioral changes and their emotional impact, which leads to stress and isolation. Often, families do not pursue a medical diagnosis until some kind of incident occurs in which their loved one’s lack of interest or empathy is so distinct and severe that they realize something is very wrong. For example, a mother who previously had a loving, close relationship with her adult children expresses no excitement or joy when her oldest daughter announces her engagement. Something that should have been happily celebrated is instead met with indifference.

Healthcare professionals often meet the person with FTD for the first time after symptoms have been identified or a specific diagnosis has been made. Professionals unfamiliar with FTD may interpret a lack of empathy as coldness or aloofness. Even professional caregivers accustomed to assisting people with other dementias may be put off; in their experience, people with dementia are often forgetful or confused, but can still connect with and emotionally respond to others. All staff providing care and support to persons with FTD must understand that a lack of empathy is a symptom of the disease, likely caused by the physical deterioration of the brain’s frontal lobe, the region of the brain most associated with empathy.

Below is guidance to help professional caregivers recognize and better understand the loss of empathy in FTD, and methods they can use to improve care.