FTD can be incredibly challenging for both individuals with the condition and their loved ones. Some common frustrations include:

Changes in behavior: FTD often leads to significant changes in behavior, such as impulsivity, apathy, disinhibition, or social inappropriateness. This can be frustrating for both the individual with FTD and their caregivers, as it can strain relationships and lead to misunderstandings.

Communication difficulties: As FTD progresses, individuals may experience difficulty finding the right words, understanding language, or following conversations. This can be incredibly frustrating for them as they struggle to express themselves or comprehend others.

Loss of independence: As FTD affects cognitive abilities, individuals may gradually lose their independence in daily activities such as driving, managing finances, or even basic self-care tasks. This loss of independence can be frustrating and demoralizing.

Memory problems: While memory loss is not typically the initial symptom of FTD, it can still occur as the disease progresses. Forgetfulness and difficulty remembering recent events or information can be frustrating and lead to feelings of confusion or disorientation.

Difficulty with problem-solving: FTD can impair a person’s ability to think abstractly, plan, organize, and make decisions. This can be frustrating for individuals who were once able to handle complex tasks independently.

Emotional challenges: FTD can cause emotional changes such as mood swings, irritability, or lack of empathy. These emotional fluctuations can be frustrating for both the individual with FTD and their caregivers, as they may struggle to understand and manage these behaviors.

Overall, FTD can significantly impact a person’s quality of life and lead to frustration as they grapple with the changes in their cognitive abilities and behavior. It’s essential for individuals with FTD to receive support and understanding from their caregivers and healthcare professionals.

Members of the AFTD Persons with FTD Advisory Council will present two sessions at next week’s AFTD Education Conference exploring these frustrations and the stigma that persons diagnosed must face as a result. One of those sessions, “Insights on Stigma,” will be livestreamed at 9:40 a.m. Central (8:40 a.m. Eastern), while the other, “Personal Experiences with FTD Stigma,” is available only for those attending the Conference live in Houston. For more information on these and other Education Conference sessions, visit our Conference home page. It’s not too late to register for the free livestream!

Finally, below is a poem written by Cindy Odell, a long-time member of the Persons with FTD Advisory Council, in which she expresses her profound frustrations with her FTD diagnosis. It ends with a powerful reminder that people with FTD are still, in fact, people, and no less deserving of respect than anyone else.