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, ability to make facial expressions, and falls are common in this disorder. Most people with PSP will struggle to move their eyes – the most differentiating feature between PSP and Parkinson’s. People with PSP can also suffer from memory issues, behavioral changes, and difficulty problem solving.

 

The symptoms of FTD vary depending on the type of FTD a person has. In Behavioral Variant FTD, early symptoms include lack of focus and motivation, difficulty making decisions, struggling to make plans, loss of inhibitions, lack of empathy, repetitive behaviors, and changes in diet – particularly cravings for junk food. Other signs of Behavioral Variant FTD are ultra-sensitivity to temperature and sound.

 

You might find that you never want to get up from the couch or turn off the TV, that where you were once social and loved being out with friends, now you’d rather stay inside. You might lash out on friends and family or say whatever it is you’re thinking – even if it’s not appropriate or polite. For this reason, depression is a common diagnosis for people in the early stages of FTD. Personality changes, particularly a loss of inhibition, might be a sign that something even worse than depression is to blame. If you or your loved one has seemed to lose their filter or is acting erratically, you should take them to a neurologist for an FTD evaluation as soon as possible.

 

One tough reality of FTD is that most patients will not be totally aware that something is wrong. While friends or family might notice behavioral changes, a person with FTD might deny that anything is wrong. While it might be frustrating to see your loved one deny that there’s a problem or refuse to seek medical help, try to remember that this is not on purpose. Many people with FTD genuinely do not realize that there is a problem and might even be offended that others believe something is wrong.

 

Because many people with FTD do not recognize that there is a problem and refuse to see a doctor, a diagnosis can take a long time. It can seem nearly impossible to convince a family member with FTD to make an appointment, and the last thing anyone wants to do is drag their loved one kicking and screaming into their GP’s office. If you are struggling to convince your loved one to see a doctor, you might want to consider talking to them about making an appointment for depression or another issue that might be affecting them. At that appointment, you can speak to their doctor about evaluating them for FTD.

 

Symptoms of Primary Progressive Aphasia FTD are mainly centered around language. If you or your loved one is having difficulty remembering the meaning of words or finding the right word for something, they might be suffering from PPA. A person with PPA might use the wrong word to describe something – like calling a chair a couch or a door a window. For some objects, they might not be able to say any word at all.

 

At the same time, PPA patients might ask what a specific word means, particularly one that they might not use as often. For instance, a person might ask what a jacuzzi is if they see one on TV, or ask what pasta is if they’re having it for dinner.

 

PPA patients might also not remember how to use objects that were once familiar to them. They might not know how to put the leash on the dog, or even what it’s used for, or forget how to hold a spatula. This symptom tends to arise in the later stages of PPA, but it can occur earlier on. Because diagnoses tend to occur after the disease has already progressed, this is still a symptom you should be on the lookout for pre-diagnosis.

 

Commonly, a person with PPA will also have trouble reading and writing. They might spell familiar words wrong, forget how to write their name, or write phonetically. For instance, if they are trying to write “k-n-o-w” they might instead write “n-o.”

 

Treatment for PPA patients is centered around helping a patient maintain their grasp of language while also finding new ways to communicate. Many PPA patients use notebooks to communicate, or else charts where different sayings and objects are drawn out for them to point to. Asking “yes” or “no” questions is also an effective way to communicate with someone with PPA. While these methods can be successful in the early stages of the disease, communication of any kind will become more difficult as it progresses. A person with PPA should meet with speech-language pathologists and therapists to come up with a plan that best fits their needs and abilities.

 

Unfortunately, there are no more concrete treatments at the moment for patients with PPA or Behavioral Variant FTD. Researchers are working to better understand the disease so they can identify new drugs and treatments to help. At the moment, there are many clinical trials that are testing new therapies and methods for treatments. Some patients might consider speaking to their doctor about participating in a trial.

 

Still, there are ways for a person to have a high quality of life after a diagnosis. Most beneficial, according to The Association for Frontotemporal Degeneration, is finding a daily routine that keeps the patient active, healthy, and stimulated.

 

The Association for Frontotemporal Degeneration explains that, “the formula is to maintain social relationships as much as possible and adapt interests, accomplishments, and memories into activities that match the person’s current functioning. For example, if competitive poker or bridge was a favorite social activity, playing a more casual or simpler version with fewer rules if needed can engage the person, connect with that part of his past, and provide a meaningful way to interact with others.”

 

The more you can stimulate the mind while adhering to the needs and comfort of the person diagnosed, the better. Jessica Crawford, the writer of the blog FTD and Me, in which Crawford shares her experience caring for her mother before and after an FTD diagnosis, said that she tried many activities until she found one that successfully engaged her mother’s mind and made her genuinely happy: a spa day. She found that the spa day was especially effective because her mother used to love getting her hair and nails done and “feeling pretty,” and being at the spa was a relaxing and calm environment that did not overstimulate her. She even managed to call ahead and arrange an appointment for after-hours so the spa was not crowded with strangers, who may have intimidated her mother.

 

The activities you engage with or have your loved one engage with will change over time as the disease progresses, but it is important that new activities are found whenever possible. In the more advanced stages of the disease, it might be helpful to seek out support groups or community resources that specialize in FTD patients. Many groups will hold activity nights catered toward FTD patients that can be extremely rewarding to take part in.

 

Life with FTD is not easy – but with the right resources and support network, a person can continue to stay engaged, active, and most of all – not feel so alone.

 

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

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Here are the sources used for this episode:

 

https://www.ftdandme.co.uk/

 

https://www.hopkinsmedicine.org/health/conditions-and-diseases/dementia/frontotemporal-dementia#:~:text=Frontotemporal%20dementia%20(FTD)%2C%20a,personality%2C%20language%2C%20and%20movement.

 

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia

 

https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotemporal-dementia

 

https://memory.ucsf.edu/dementia/ftd

 

https://www.nia.nih.gov/health/treatment-and-management-frontotemporal-disorders

 

http://ftd.med.upenn.edu/living-with-ftd-related-disorders

 

https://www.helpinghandshomecare.co.uk/blog/living-with-frontotemporal-dementia/

 

https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration

 

https://www.crisisprevention.com/Blog/Caring-for-Persons-With-Frontotemporal-Dementia-FT

 

https://www.theaftd.org/living-with-ftd/coordinating-care/

 

https://www.alzheimers.gov/life-with-dementia/planning-for-future

 

https://www.theaftd.org/wp-content/uploads/2009/03/AFTD-40-pg-booklet-NewDiag_Website.pdf

 

https://www.asccare.com/stages-of-frontotemporal-dementia/

 

https://www.brightfocus.org/alzheimers-disease/article/what-are-stages-frontotemporal-dementia

 

https://www.nia.nih.gov/health/types-frontotemporal-disorders