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All Home Care Matters

Apr 3, 2021

What is Frontotemporal Dementia?

A diagnosis of frontotemporal dementia, or FTD, can rock a person’s world. Whether or not this was a diagnosis you anticipated, it can be difficult to grapple with the reality of it, for both the diagnosed patient and their family members. There are a few reasons a diagnosis of FTD can be particularly devastating. For one thing, the majority of people diagnosed are younger than 70, so the last thing they expect is for their life to be uprooted by dementia. For another thing, there is no cure and no treatments available at the moment – even though researchers are working hard to change that. Still, there are ways for a person to maintain a meaningful quality of life for as long as possible, especially if the disease is diagnosed in its earliest stages. If you or someone you love has received a diagnosis of FTD, we are here to support you and guide you through. We know that this is a difficult time – and it can feel daunting and overwhelming to plan ahead for an uncertain future. While you might feel helpless right now, know that there is hope. Treatments ARE getting better and there is support out there for anyone who needs it. We’ve spoken on this podcast before about early onset Alzheimer’s, and FTD is similar in many ways – but I am sure if you are experiencing FTD you might be tired of people relating it to early onset. It’s important to remember that these are two separate diseases, although similar, and should be considered as such. For effective treatment and planning ahead to take place, it’s essential that patients understand their own individual diagnosis of FTD, separately from other similar diseases. That’s why today, we’ll be diving into exactly what happens to a person’s brain with FTD, the stages of the disease, and the best way to maintain a high quality of life after diagnosis. We hope that by the end of this episode, you’ll feel less daunted and more supported – and that you have a clear understanding of what this disease really is and what it might mean for the days and years ahead. This is not a diagnosis that you chose, caused, or have much control over – but you do get to choose how you can live each day as meaningfully as possible. Even when the disease is in its later stages, your caregivers can do what they can to make every single day count. Whether you’ve received a diagnosis or someone you love is experiencing FTD, furthering your knowledge of the disease and understanding exactly how it impacts the brain will give you a much better idea of why you are feeling or behaving in a certain way. If your loved one has FTD, then knowing more about how the disease functions will help you to understand those parts of FTD that might feel especially frustrating or disheartening – particularly changes in personality and behavior. We want to start with a reminder that you are not alone. While FTD can feel extremely isolating, particularly if you are young and do not know anyone in your personal life who is experiencing the disease, about 50,000 to 60,000 Americans are living with the disease today, according to The Association for Frontotemporal Degeneration. That might seem like a small number compared to other diseases – but it’s large enough that support networks, including specialized therapists and counseling groups, are out there. Now, we mentioned earlier that many people with FTD might be compared with those who have early onset Alzheimer’s disease. We also mentioned the importance of distinguishing between the two diseases – because while they are similar, they are marked by key differences. For the sake of understanding what makes FTD different than Alzheimer’s, let’s compare. FTD patients are most commonly diagnosed between the ages of 45 and 65, while the vast majority of Alzheimer’s diagnoses occur in the later stages of a person’s life (early onset is a rare exception). Most notably, though, memory loss is not as prevalent of a symptom in FTD patients. FTD, especially in its early stages, mainly affects language and behavior, while Alzheimer’s targets memory loss. Now, FTD patients can suffer from memory loss, especially as the disease progresses, but it is not the primary symptom. The first symptom in most FTD patients is behavioral changes, which is one of the later symptoms in Alzheimer’s patients. FTD patients tend to have more difficulties with speech and communication than Alzheimer’s patients. It can be difficult for an FTD patient to make sense while they are speaking, or for them to make sense of what others are saying to them. In Alzheimer’s patients, communication issues tend to center around remembering names or important information, rather than understanding the concept of what someone is saying. In the later stages of Alzheimer’s, they are more likely to struggle with making sense of language, but this isn’t always the case. Finally, patients with FTD rarely suffer from hallucinations and delusions, which are common in people with Alzheimer’s disease. This, along with memory loss, are two of the most significant differences between FTD and Alzheimer’s. In fact, the lack of memory loss in FTD patients, combined with the young age that most FTD patients get the disease, makes achieving a diagnosis particularly challenging. Doctors tend to look for memory loss as one of the leading causes of dementia, and they tend to focus on age. Too often, a person with FTD will be misdiagnosed with depression or other mental illness because of their behavioral changes. Understanding the differences between Alzheimer’s and FTD is just the first step to having a clear idea of what FTD is and what it means for the lives of those diagnosed (and the lives of their friends and family members). To further our understanding of the disease even more, let’s get into how it actually affects the human brain. Navigating a life with FTD starts with understanding the disease itself. When we have a comprehensive idea of what our brain is experiencing during FTD, we can better understand our own symptoms and plan ahead accordingly. As the name implies, Frontotemporal Dementia affects the frontal and temporal lobes of the brain. These areas of the brain are critical to learning, communicating, and empathizing. In FTD patients, the frontal and temporal lobes are suffering from nerve cell damage and death. As the nerve cells in the frontal and temporal lobes are damaged, connections between the cells are broken. These connections are what allows the brain to send signals to itself and the rest of the body. As the nerve cells die or malfunction, the brain tissue in the frontal and temporal lobes actually starts to shrink. FTD comes in two forms – Behavioral Variant FTD, which is the most common, and Primary Progressive Aphasia or PPA. PPA and Behavioral Variant FTD affect the brain in different ways. In Behavioral Variant FTD, the frontal lobe is most severely damaged. The frontal lobe affects how a person behaves, plans, problem solves, focus, and process emotions. Suffice it to say, when this lobe experiences damage, it leads to major changes in personality and behavior. In Primary Progressive Aphasia, the temporal lobes suffer the most damage. The temporal lobes control much of our understanding of language – they store the meanings of words, the names of objects, and how we recognize important people, places, and things. In addition to Primary Progressive Aphasia and Behavioral Variant FTD, FTD can also be linked to two very rare neurological diseases that affect mobility. These are corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP). CBS occurs when nerve cells die in parts of the brain that control movement – most commonly, arms and hands are impacted. CBS patients can suffer from orientation and language problems, but this is not always the case. PSP affects a person’s ability to walk and maintain balance. Body stiffness, ab…

17 min