Facing FTD: Support, Education, and Hope with Esther Kane - Episode 121

Are you or a loved one navigating a diagnosis that feels misunderstood? Frontotemporal Degeneration (FTD) is the most common form of dementia for people under 60, yet it often goes misdiagnosed and unsupported.

In this vital episode of the Caregiver Relief Podcast, host Diane Carbo is joined by Esther Kane, MSN, RN, CDP, the Director of Support and Education for the Association for Frontotemporal Degeneration (AFTD). Together, they shed light on this complex disease, offering a roadmap for families desperately seeking answers, resources, and hope.

If you are dealing with the unique challenges of FTD—from behavioral changes to language difficulties—this episode is a must-listen.

💡 Key Highlights from This Episode

• FTD vs. Alzheimer’s: unlike Alzheimer's, which primarily affects memory centers like the hippocampus, FTD affects the frontal and temporal lobes, impacting behavior, personality, and language. It also tends to be a younger-onset dementia, often striking people in their 50s and 60s.
• The Misdiagnosis Struggle: Because it strikes younger, FTD is often misdiagnosed as depression, a midlife crisis, or menopause, leading to inappropriate treatments.
• Real Support Exists: The AFTD offers incredible resources, including a dedicated helpline staffed by trained social workers, national support groups, and Comstock grants for respite and quality of life.
• Hope on the Horizon: There is exciting progress in research, with multiple active clinical trials specifically targeting genetic forms of FTD.
• Practical Caregiver Tools: Esther shares actionable tips, such as using AFTD "awareness cards" in public to discreetly explain behaviors to others without needing to verbalize it in the moment.

🤝 You Are Not Alone

One of the most powerful takeaways from this episode is Esther’s reminder that you cannot—and should not—navigate this journey alone.

Tune in to the full episode to hear Esther’s compassionate advice and learn how to build the supportive care team you deserve.

Podcast Episode Transcript

Diane: Welcome to the Caregiver Relief Podcast. I'm your host, Diane Carbo, rn

Diane: and today we are focusing on a form of dementia that is often misunderstood and underdiagnosed, frontotemporal degeneration.

I'm honored today to be joined by Esther Kane, MSN, RN and Certified Dementia Practitioner who serves as Director of Support and Education for the A FTD, the Association for Frontotemporal Degeneration.

Diane: Esther brings a wealth of clinical and educational experience, as well as a deep passion for ensuring that individuals and families impacted by neurological conditions receive the resources and care they need. In today's conversation, we'll explore AFT's mission, the importance of early diagnosis, and the resources available for both families and healthcare professionals.

Esther will also share how A FTD is advancing research and education to drive meaningful change for the FTD community. Esther, thank you so much. I know you, were a little challenged, to do this with me today, and so I appreciate your efforts here. before we begin to dive into your work with A FTD, can you share a little bit about what first inspired your passion for working with people with neurological conditions?

I sure can.

Esther: So when I was young and freshly out of college for the first time, I had the opportunity to work at an assisted living facility for people with dementia. I actually had a friend whose mother was an administrator. and so she hired me as an, as a receptionist. I was doing some accounting work and I quickly just really enjoyed working with people with dementia.

I had a, A real sense that there was more to people with dementia than we were giving them credit. that very often a smile went really far. and really just looking at how can we improve the quality of life for people who have these types of diseases. And so over time I got more and more invested in it and more involved.

and at one point I had a coworker who said to me, Esther, you need to go become a nurse because you were just meant for this type of job. the opportunity of. Failed itself. And so I went back to school and I got my RN and then two young kids at home. I got my BSN and my master's. and really went right back to working in long-term care in the nursing capacity After that.

So really most of my career as my, as an adult was spent really caring for those people, who were diagnosed with different forms of dementia, Parkinson's disease, a LS, other neurodegenerative diseases, and seeing what can we do to improve their quality of life? How can we help them live their best life today, help them do as much as they can today.

and that's really helped me at A FTD be able to bring that same philosophy into. The work we do in helping support these families impacted by this disease and helping them figure out, how can we help people live their best lives today despite this diagnosis?

Diane: That's a beautiful mission.

For listeners who may not be familiar, what is frontotemporal degeneration and what does it, how does it differ from other dementias like Alzheimer's?

Esther: So frontotemporal degeneration is a neurodegenerative disease of the brain and it particularly affects the frontal and temporal lobes of the brain.

it differs from Alzheimer's by location of the brain. It affects, so Alzheimer's typically affects the hippocampus area, so it affects more of our memory centers where FTD affects more of our language and behavior personality centers in the brain. It also differs from Alzheimer's disease in that it's caused by different proteins in the brain.

So it's not the same source of, proteins or degeneration that's happening. Although all degeneration and brain changes does result in changes to a person, understanding what's causing it is really important. It's really important in the research space because all of these disease modifying therapies that are coming out right now in the Alzheimer's space.

Aren't gonna help somebody with Lewy bodies or FTD particularly because they're not targeting the same root, protein or pathology. So those are some of the ways they differ. One of the biggest ways they differ is that FTD tends to be a younger onset diagnosis. So it's a dementia that can occur in people's lives in their fifties or sixties or in younger years.

And this makes diagnosis very difficult because versus people saying, oh yeah, maybe you have some, dementia, or you're. Some cognitive changes, what they're being told is you're having a midlife crisis or you're just depressed, or it's, menopause or, something along that line. And because of that, it leads to a lot of misdiagnosis, a lot of, inappropriate treatments.

We hear a lot of people who go through a lot of aggressive depression treatments, ECT or other treatments. Yes. and it ends up being that they weren't depressed. They had severe apathy from FTD. Yeah. And so the treatments don't always work the same way. So it's important to understand the disease that you have to really get a further diagnosis, understanding whether it is that you have Alzheimer's disease or FTD.

And in this day and age there are biomarkers that can tell you if you have Alzheimer's disease. and we're getting better and better biomarkers in the Lewy body space. And we have biomarkers hopefully on the horizon in the FTD space. And this is really important for us to be able to understand. What is the disease that I'm dealing with?

Because you can't manage something when you don't understand it.

Diane: Exactly. And I've worked with patients with FTD and with Lewy Body, and they are, the Lewy body I know gets misdiagnosed for psychiatric disorders a lot of times, just like it sounds with FTD and, it's sad because the treatment is not the same, the approach is not the same and families struggle.

How does that impact patients and families? Because they're going, how do they get know to get a diagnosis? How do you help them with that?

Esther: I think that's really, it's part of why AD'S Mission is really driven by awareness is we need to help make FTDA known diagnosis because by making it known, people see themselves and the diagnosis more than ever, people are going to our website and saying, oh my goodness, this is exactly what I'm dealing with.

This is what's happening. And they're actually going back to their doctors with information and saying, I think my loved one has FTD, I want him to be seen by, a neurologist or a specialist who can diagnose this disease. And so it's really the families who are advocating for themselves. Also though, as you raise awareness, clinicians are becoming more aware of the disease.

and so as they're becoming more aware, they're spotting it, they're asking more questions, and they're understanding more of the referral pathways to get people to an accurate diagnosis. although diagnosis is still hard. I think that we are starting to see some positive gains over the last year or two and people, having better experiences in getting a diagnosis.

Still taking too long, but it's not taking as long as it used to.

Diane: And that's a good thing. We have to go baby steps. We just have to be grateful for what we, where we are at this moment in time. And hopefully we'll move forward, faster, especially with the aging population upon us. a lot of the caregivers could actually suffer from FTD and not know it.

that's also another challenge. A FTD is the leading organization dedicated to this condition. Can you describe its mission and role in supporting families in, driving research?

Esther: Really from the very beginning of A FTD starting, it was started by a caregiver who wanted to ensure that nobody else, ever had to face this diagnosis alone again. Helen Ann Comstock, her husband had FTD and with a donation of a thousand dollars said, we're gonna start an organization. The leading experts in the time were really telling her that if we wanted research focused on FTD, there needed to be an organization whose sole mission was to ensure that was happening.

And With a thousand dollars donation and tons of grit, I have so much respect for Helen Anne. She really created a FTD, and now we stand where we are with over 50 employees and a large organization who's really gearing towards, supporting people diagnosed as well as their families and their care partners. We do a lot of health provider education, so we do a lot of work, ensuring that health providers are better informed of FTD and how to navigate the disease. We offer CME programming free CME programming as well as newsletters to specific audiences, and we do a lot of work advancing the research.

A FTD has a whole department who does a lot of, connecting and convening of experts in the field to help advance the current, landscape. And right now we do have multiple clinical trials in FTD. These clinical trials are specifically for people with a, GRN, Genetic, mutation. So in FTD 60% of the time, it's sporadic.

We don't know what's causing the disease. About 40% of the time there's a family history. So there's a family history of psychiatric conditions, Parkinson's type symptoms, Alzheimer's, dementia, behavioral issues, psychosis. and then in about 20% of the total number of cases of FTD, there's, it's caused by a gene.

So it's caused by a known genetic gene. And this is an autosomal dominant mutation, meaning that, from generation to generation, each child has a 50% chance of having the gene. But now more than ever, there's hope in this space. So the current clinical trials are really looking at those people who have, A GRM mutation and many of the treatments are looking at increasing progranulin in the brain.

And so we have one who is in phase three and a couple that are in phase one and two. So it's exciting to see the landscape and how much it's changed in my time at A FTD when I started, there was no clinical trials or one just on the horizon. to be where we are right now with multiple is it's a really exciting time.

Diane: That's exciting. I had no idea that they were doing clinical trials. I know it's, that's very important and I hope that the listeners out here, will, look into a clinical trial if you get such a diagnosis because it helps the future, and it may help your future generations in your family. If it is a gene that is being passed down.

Now you're the, director of support and education. What resources does a FTD offer for caregivers who may feel overwhelmed or isolated in this journey?

Esther: So I think the number one resource we have is our helpline. we really encourage people to reach out and to call the helpline. It's staffed by trained social workers who all they do is FTD all the time.

You can reach the helpline by calling, and the number is 1 8 6 6 5 0 7 7 2 2 2. You can also go to our website and email us at info@theaftd.org. Or you can also schedule an appointment with staff so you can go on and you can schedule a time to connect that works for you with a, helpline staff member to be able to talk to them.

In addition, A FTD has support groups throughout the country. So we have over a hundred support groups and these support groups, some of them meet virtually, some of them meet in person, some of them cover regions. we have national support groups focused on young adult caregivers. We have support groups for people living with FTD.

We have dropping groups for people living with FTD. We have language support groups. We have a bilingual Spanish speaking support group. We have an L-G-B-T-Q caregiver support group, just to name a few of the different things that you can access on our website. first call the helpline, 'cause they're gonna get you connected with all the things that are right for you.

and then find support because nobody can access this journey alone. In addition, A FTD has a Comstock grant program. So these grants really offer a modest assistance for people diagnosed with FTD to help support them. So whether it is a respite grant for caregivers to help offset the cost of respite care, quality of life grants for people diagnosed, and these grants can be used to really improve their quality of life.

People use them for things like iPads to improve communication, adaptive equipment in the home. Some people have used them for art supplies or things along that line. that helps them maintain their quality of life and their purpose. And then we have travel grants, which you can use to help pay to attend, FTD education conferences.

A FTD hosts an annual education conference every year, which really gathers the community, people diagnosed, care partners, family, friends, as well as health professionals and researchers all together in one room with biopharma to be able to talk about what's happening in the research space. what are the best practices we're seeing in FTD care and support to meet others on the journey and build connection. So not only can you watch the conference, In person and come live. You can also attend virtually, and if you go to our website, you can learn more about that too. In addition, we have tons of print resources, so just go to the website and look around, type in the search, what you're dealing with and what's happening.

Is it aggressive behaviors? Do you have kids at home that you're looking for support? Do you have questions around genetics? The website is pretty, extensive and we offer a lot of information to help you get going and to learn more about how to navigate the disease. The number one thing you can do for yourself is to educate yourself about what the disease is that you're dealing with.

and that makes the biggest difference in how you manage it.

Diane: That's impressive because I have to tell you, the emotional and financial toll of FTD fam, that diagnosis can take on families is overwhelming. And I don't know many organizations that provide that kind of support that really can make a difference.

Just that, know that they can make a phone call. is pretty impressive to my listeners out there. This, all this information, the links to the site and, last year's, video of the conference will be put on the permanent page at, and in the show notes so that you'll be able to, get this information.

if you know someone or are living with somebody with FTD. Esther, can you tell me what breakthroughs or promising research in the field of FTD are you most hopeful about right now?

Esther: Obviously the clinical trials are most helpful, hopeful about right now. That's the big deal, right on the scan, but I think some other things are actually happening on better understanding how we can live with the disease and how we can care for people right now.

'cause really, until there's a cure, there's care. So helping people be able to live with the disease every day is really important. And there are some good studies right now looking at communication strategies. There are some studies looking at how do we better support caregivers with A-B-V-F-T-D or a behavioral variant FTD diagnosis.

and so it's really important one, that people participate in these research, studies. 'cause it helps us better understand what is helping improve your quality of life and what is not, and what strategies are gonna be helpful for you. When we have research in the space, then providers can look at that and say, okay, this is evidence-based practice.

We see benefit to this, to the community, and then they can employ it in the clinical field. And so your participation in research is really important in helping us better understand what you need to live a better life, as well as what strategies and approaches are gonna be most successful. If you wanna learn more about research opportunities, you can go to the FTD Disorders Registry, which is, co-funded by A FTD in the Bluefield Project, and it is a research registry for FTD.

You can participate in surveys to participate, to give your information, to be able to help researchers better understand the disease, as well as be connected with research, that's out in the community.

Diane: one of the things I encourage all my caregivers to do is create a care team partner support group.[00:17:00]

And what I mean by that is they need to surround themselves and ask for help from people that can provide practical assistance to their needs. And somebody with FTD, especially if they have the behavioral. Variant are really very challenging and, it takes time and patience. There's, so many different approaches and activities to do, and I think that family caregivers lack, often see themselves as failures if they can't do it all themselves.

And it, especially with this diagnosis, I've seen it so many times, you can't do it alone. You really have to have a team of people to support you, whether it's to someone to help with the, the lawn or the pets or just putting groceries away, or laundry or asking someone to bring meals in on days when you need help.

it, it's hard for caregivers to do that and they really need to learn that it's really important, to be able to do that. for the caregivers listening today, what practical tips can they take to better advocate for their loved one living with FTD?

Esther: Yeah. Diane, I think that you're so right about the caregivers can't pour from an empty cup, right?

We've heard that statement so many times, but they really do need to build their care team and they need to advocate for themselves too. You can't care for somebody if you're not caring for yourself. I hear from too many caregivers who end up going into the hospital or having their own health issues that come up, and then there's nobody to care for the person with FTD, and so they're neglecting their own care because.

There's no other system set up to help support them. Nobody is expected to do this alone, and I think the more you can tell yourself that you are not failing by asking for help is. The best thing that you can do for yourself. The caregivers who do well, they ask for help. They build their support systems and they build their communities.

They recognize that I cannot do this alone and I need to create a team to be able to manage this, and that can look differently. I, another thing I hear a lot from caregivers that's a struggle is I don't even know what would be helpful for me. My friends ask what would help, and I don't even know.

So one thing we recommend that's really practical is just write down some things when you have time. That would be helpful. Can somebody mow your lawn? Can somebody pick up the medications at the pharmacy? Could somebody bring you dinner one time a week? Can somebody come sit with your loved one so you can go for a walk?

Can somebody come help you in your garden? Because that's really important to you. It doesn't have to be care of the person. Sometimes just taking some of the other tests. Off your plate can create space for you to then be able to be a better caregiver in the process. So write down the things and when they ask, you can say, here's a list of some things that would be helpful.

If there's anything on here that you would like to do, let me know. Very often they're happy to see something and they might go, oh, I'll bring you dinner or. I'm happy to come sit with your husband while you go out and we can watch the ball game or whatever it is, so you really have to ask, and every person's gonna be different.

not everybody may be comfortable coming and sitting with your husband, but like I said, they might be comfortable mowing your lawn or weeding your garden. And so that can be a huge blessing, from other individuals. We really encourage people to tap into their local communities, whatever it might be, whether it's the.

Their faith communities. if they have faith communities, whether it's other social supports in their communities, nobody needs to do this alone. And we all need friends. And I think the big message, I would say to all you people out there who are not the caregivers who might be listening today.

lean in and provide support. So often caregivers feel so isolated and alone. It's a very hard disease to manage. their friend groups shrink, their societal groups shrink. They're more isolated. So any little thing that you can do is probably going to bring it. Be a huge joy for the person diagnosed.

I had somebody who I was talking to a couple weeks ago who they were, they were bringing the Bible, they did a bible study. they were from a faith community and they were bringing the Bible study to the person diagnosed. But that also meant that the person diagnosed got to still participate with her girlfriends who she'd been doing this with for years.

It also meant that the husband got a few minutes to go do something else, so he was outside working in the yard or doing something else, and he got a break, and that might not have seen like a big deal, but. You don't know the amount of joy that you just brought to that person. Diagnosed to know that her friends still wanted to come and sit with her and still cared for her even though she was going through these changes.

I think if you put yourself in the shoes of that person, what would you want? How would you want people to show up for you? You might be surprised what that looks like. So really encouraging all those non caregivers to show up for the people who are caregiving in their communities. and then you need to bring your, build your health provider support.

Network. You need to find the helpers in your community. there was that Fred Rogers quote, when times of trouble, find the helpers. Find the helpers. Who are the people in your community who can help you? Whether it's going to the local office on aging, whether it's looking into adult daycare, home care in the home.

Source these things out early. I know people are scared. It can be really overwhelming and you don't want to learn, but by not learning, you're actually doing yourself an injustice. So take the time to say, I am gonna learn. I'm gonna dive into it. I'm gonna figure out what resources are available in my community.

You never wanna make a decision in an emergency. And so the more that you can research and see what's available, that's gonna help you make better decisions when you need to make decisions. so we say a lot in our helpline. Early discussions lead to better decisions. So even though we don't wanna have discussions, those early discussions about, quality of life, about, advanced directives, about finances, about.

Family dynamics. Those early discussions allow time and space for people to make decisions so that you can make those decisions in a good way. So those are some practical things I would say that are just huge helps to people who are navigating this disease.

Diane: I wanna, let my listeners know that 63% of family caregivers become seriously ill or die before the person they're caring for.

Yeah. I literally lose two or three a year of my caregivers to, hospitalization or admission to a nursing home or even death. So I really do encourage my, the family caregivers to reach out and ask for help. It's so important and I created a patient care advocate course. That steps helps you not only learn how to advocate for your, loved ones, but also how to put a team of people together so that you get the help you need throughout the journey.

Because the average journey for a caregiver can be, six to seven years, but for some people. It can be 20. And, FTD also happens at younger ages. So you're dealing with young fam, people that may have teenagers at home. You have people that all of a sudden their income is taken away. there's so many issues and dynamics that, they really do need to learn how to reach out and ask for that help and support.

so how can communities in the general public become more aware and supportive of families impacted by FTD?

Esther: We need to learn, right? We need to know what these diseases are and what they look like. We need to understand, diseases like FTD can be difficult, specifically the behavioral variant version because it.

It presents in such a way that's very stigmatizing to the family. The person may look fine, they may look like there's nothing wrong, so the behavioral seems. Purposeful, like they're doing this on purpose, but they are not doing this on purpose. They have a neurodegenerative disease, meaning their brain is changing, and where their brain is changing is affecting their personality.

It's affecting, the, their decision making. It's affecting how they feel. It's making them very depressed. It might make them feel like they're having loss of empathy. Or loss of emotion, they might be very disinhibited and these symptoms and these behaviors can play a huge role and sometimes in very.

stigmatizing behaviors in the community. Yeah. we know people who say very rude remarks, or we know people who get arrested because they accidentally, they thought they were shoplifting when really they, they weren't able to comprehend fully what it was that they were doing in a meaningful way.

And so I think the more you know about the disease, then you recognize and you're able to say, no, this is their disease. This is not a purposeful behavior. They're not just rude, they're just not. They're not just unkind. They have something happening. So educating yourself, number one thing you can do to be able to understand the disease and support people.

The other thing is to recognize that they're, this is, they're people. These are people who have been, they're. Having brain changes, when somebody's having cardiac or heart issues, we don't stigmatize them the way we stigmatize somebody when they have neuro neurological changes. and so it's really important that we understand that and we create those communities of support and understanding versus being judgmental. We wanna be open and we don't wanna create that space. For families and people diagnosed, A FTD has these awareness cards that they can keep in their pocket. They can hand them out. we have people with primary progressive aphasia who they'll hand out the card before they go out to eat. So they can just say, no, I'm not drunk. I might, my speech might be slowed. I might be a little stuttered. I might have a little trouble here. Give me a moment. I have primary progressive aphasia, and what that does is it allows the person to recognize, okay. We're dealing with something other than just, weird human behavior. That's not what's happening here. Yeah. it creates more of a community and a little bit more understanding, and you'd be surprised how far a little understanding and kindness can go in a person's life.

Diane: I love the concept of the cards, because I often tell my family caregivers create a little business card that says, my father or my mother, whoever has a dementia, and just, please forgive their behaviors or be kind. you write something on it, put something on it that's meaningful so that people can understand, because the more, like you said, the more we educate and the more. we approach the public with these, 'cause a lot of families feel uncomfortable taking their family member even outside the home.

And that's sad because their world gets smaller and smaller. And it's important, that, they do be able to. Stay out and enjoy life as much as they can for as long as they can. And, yes, the behaviors are challenging and they can be uncomfortable, but like you said, they're not intentional and they're not purposeful. They're just a result of a brain that is no longer functioning at optimum level.

Esther: Grace and kindness go very far in life, don't they?

Diane: Yeah. And you know what, I feel bad because even in our healthcare system, we have a hard time with those, with behaviors, challenging behaviors to even place them because nobody wants them. And it really puts the family in an uncomfortable situation and, that where they do feel alone and, stigmatized. It's challenging. So Esther , I think , oh, I'm sorry. Go ahead. I was just gonna say

Esther: Diane, talk about health providers. I think that's another place where health providers can educate themselves. I can't tell you how many people I talk to with FTD where the providers who don't understand tell them,the nurse tells them they don't have FTD and they keep telling them they don't have FTD because they don't have memory loss. And so they keep saying you don't have dementia. And that's not all providers. A lot of providers are very well educated and would not do that, but sometimes it happens. And we just really wanna encourage providers to learn about these different diseases and to understand them because nothing is more isolating to a family member. It's actually more isolating than when the communities mean, is when the health provider community. Does not recognize the disease that they're dealing with and does not see them because they expect the health provider to at least know. I think as providers we need to do our due justice to at least be curious about what it is that this person's disease is and learn more about it before we give, opinion or judgment about what that diagnosis is.

Diane: Exactly. and so many when a family member is coming to the health care provider saying, we are ex we are having this behavioral issue. how can you help me? a lot of times they, the healthcare provider themselves is at a loss. That's why I love that you have the helpline because, Being informed makes it so much easier on how to handle it. And then you can go to the healthcare provider. 'cause I find this with a, across the board with most dementias, is that the healthcare providers don't know what they don't know. And you are actually living with the disease and providing care for somebody with that disease. And you have to educate them. So you have to be. confident or at least strong enough to say, Hey, call the helpline and talk to them because, or hook up with, the, A FTD, because, you need more information on this disease because, you're, I tell my caregivers, Hey, you're employing. Person to give you information. And if they are not listening to you, you have to, get their attention. So provide them with information, hook 'em up with the right organizations if you need to. or have somebody, advocate for you if they're not listening, or find a different provider who's going to be more. Compassionate and maybe empathetic towards and willing to learn. they're out

Esther: there, right? They're out there.

Diane: Oh, they are. They are. There's tons of them. There are. and the other issue we have is, Medicare only pays for a 15 minute appointment and, in 15 minutes there's the doctor, is supposed to address it, assess it, diagnose. Treat and then document, and it's just a 15 minutes is just not enough time, for anything to get,accomplished. And those days of a doctor spending time with you,is no longer, a reality. And that's why I encourage every family member that, or caregiver to write down everything that you wanna address. And, don't make long dissertations, just read the question that you have. And. Actually take time and ask if you can record it, because recording the answers will help you. 'cause you're already stressed, you feel there's time overwhelm. You wanna get everything in a short period of time. And,you're. You're stressed, so you're not going to hear everything, and it takes a person more than one time. So I tell them, I encourage my caregivers record a conversation. ask permission and say, can I record this answer so I can listen to it again and again to let it sink in so it can give the guidance that I need or, and then I also encourage them to ask, If I need more answers, can I email? What's the best way to reach you? Can I call you, can I email you? how, what's the best way to get, more information if I need it and follow up? And I think that's, if caregivers start doing that, and opening that line of communication, it not only educates the professional healthcare provider, but it gives the family member confidence that they're being listened to as well.

Esther: And I think it's knowing what provider provides, what support. I've talked to many family members who have been on the long waiting list to see the neurologist to deal with the behavior. And when they get to the neurologist is okay, you need to see the psychiatrist and I'll treat this. And then they're like, what? So they gotta wait longer. And it's a process. And so knowing who you should talk to for what is really important, I think, as a caregiver, I love your example of writing it down and writing your questions down. I think that's really important. And I really like the, more evolving models of palliative care and supportive care that are coming out that is really bringing the entire interdisciplinary team into providing care for the person and providing more time for some of those longer discussions. yeah. These supportive palliative care programs are really great in helping people diagnosed with FTD and their entire family be able to approach the disease from a really holistic viewpoint of what can I do today to maintain my quality of life and what supports can we bring around me. The other, emerging program is the guide program, which is out now, and seeing patients, and that's another way for people to have a dementia support system team around them. A FTD has been doing a lot of work educating these guide providers about aft d, about FTD and what that disease means and how you can support your participants who have this disease. but the guide programs, they're all around the country and that's a newer model that is, I think, gonna really help alleviate some of this, waiting for months and months to doctor's appointment for things that really an interdisciplinary team can do. A really good job of assessing and seeing what's going on.

Diane: People look at palliative care as a step closer to death. What they don't understand is it is a service that can actually bridge you to wellness, bridge you to other things, like an interdisciplinary approach. And they don't wanna take advantage of it. 'cause all they can see is, oh. They're gonna die. no, it's not. So I really want my caregivers to understand, or my listeners to understand that palliative care is a bridge to better care. Sometimes in a world where we are, everything's time is time overwhelm and people aren't able to get what they need. we no longer take an interdisciplinary approach to anything. We're very, every, everything specific. the neurologists, the neuropsychologists. Orthopod used to do everything, the orthopedic surgeon, and now there's one for a wrist, one for a foot. it's the same with the diagnosis with many other things. it's really important. I love the fact that you're talking about palliative care. 'cause that's really a nice approach that people don't look at often enough.

Esther: And it's a shame really. 'cause palliative care, I understand why, I understand the fear that comes with it or that kind of halt, studies are showing that people who participate in palliative care, they have longer, they live longer. Yeah. They live longer and they live better. and their families are more supported and their, the grief after is different. So like when we look at this whole spectrum, it's 'cause they're getting better supported throughout the process. So at A FTD, we really do encourage people to access it. If it's available to them and to look into it, at least do yourself the benefit of getting a consultation and learning about it. You don't have to participate, but you may not, there might be benefits and supports available to you that you don't even realize because you're not pursuing it.

Diane: yes. and that's why, again, I love that, that you have the, help line because that is so important because people will have options presented to them That they wouldn't normally know that it exists. Esther, I wanna thank you so much for your time today. How do people reach out to you or your organization?

Esther: So we recommend that you go to our website. If you have a question, depending on what it is that you're looking for. Most people reach us through the helpline, but there's other ways you can join our newsletters. We have quite a few. We have a newsletter for health providers. We have newsletters to stay up to date on the research. We have newsletters to just get tips and tricks and ways to manage the. you can also follow us on social media. We're on Instagram, Facebook, LinkedIn, Twitter, we're everywhere. you can follow us to say up to date on what's happening, but if you have questions, if you have FTD people in your community, if you're newly diagnosed, go to the website, reach out. we're happy to support you. This is what we do. This is, we want to help you. So don't think that any question is too small. I've had people just reach out because they wanted confirmation, they were doing the right thing. They actually didn't even have a question for me. They just wanted to know that they were on the right road. and and we're happy to talk to them. We're happy to be able to share that with them. And if we can offer just a little bit of guidance and support and just a listening ear, we're happy to do it. So please don't hesitate to. To reach out and call us, join a support group, get connected. You don't have to do this diagnosis alone.

Diane: Beautifully said. to my family, caregivers out there, you are the most important part of the caregiving equation. Without you, it all falls apart. So please learn to be gentle with yourself. Practice self-care every day, ask for help because you are worth it.