Frontotemporal dementia with Dr. Halima Amjad

[Dr. Mia]: 0:43

to Ask Dr. Mia podcast, conversations on aging well. Today I'm talking with Dr. Halima Amjad and about frontal temporal dementia and caregiving. Dr. Amjad is an assistant professor of medicine at the Johns Hopkins University School of Medicine. Her career as a geriatrician and health services researcher centers around people living with dementia. She cares for patients at the Johns Hopkins and Alzheimer's Treatment Center. Her research focuses on medical care challenges and dementia, including under diagnosis, hospitalization and primary care support. Her advocacy work includes serving on the board of the Association for Frontal Temporal Degeneration and as chair of the Maryland Virginia I. Jones Alzheimer's Disease and Related Dementia's Council. Welcome to the podcast, Alima.

[Halima Amjad]: 1:42

Thank you for inviting me.

[Dr. Mia]: 1:45

And Kanima, I actually overlapped a year in geriatrics fellowship, so I'm bringing her on because I know she has both professional and personal caregiving experiences, particularly around her father's diagnosis of frontal temporal dementia. And I know FDD has been in the news recently with the diagnosis of Bruce Willis, and it's Alzheimer's dementia and has very unique needs and questions that I think Halima will be really helpful in helping us and the audience understand. So I guess to open that up Halima, can you tell us a little bit about your father's experience and your family's experience with frontotemporal dementia?

[Halima Amjad]: 2:39

Sure, and I'll start with really how it all started and how he got diagnosed because we know that that's one of the big challenges in frontotemporal dementia is first just simply getting a diagnosis and understanding what's happening to your loved one. One of the reasons that it's challenging is because it is often a form of early onset dementia, meaning it often starts before the age of 65. It's actually thought to be the most common type And in my dad's case, he was exactly that. He was in his mid-50s when we started to notice slight changes in his personality. So he was still working as a dentist. I was actually in medical school at the time living at home. Some of the symptoms now we notice now that we look back. At the time, we didn't realize that it was early symptoms of frontotemporal dementia. my mom just thought, oh, he's quieter than his usual outgoing self because his first born is getting married. Now we realize that it was probably some of the language and word finding difficulties that he started to notice. He was always a very outgoing and a happy-go-lucky, easy-going person. And we noticed just really slight changes in his personality, that he was a little bit more gruff and a little bit more irritable, my mom noticed certainly those of us who knew him really well noticed. And at the time actually my brother was going to be graduating from dental school. So for my dad it was a time to now expand his dental practice knowing that he and his son would get to work side by side. And my mom noticed that when they were building a new practice actually she was having to make a lot of decisions or my dad was turning to her which she thought was a bit odd as well. You know through this time I remember you know, could he have depression? He'd always been a bit overweight, so we had him tested and he started treatment for sleep apnea. And really nothing had panned out. And at the same time, the symptoms were pretty subtle. But then he actually started to complain more that he was noticing trouble finding his words. It wasn't noticeable to us yet when he would speak to us. We actually just joked that he was getting older. Of course, now as a geriatrician, I look back and he wasn't that old. And so this is something I discovered later looking through his medical records that he actually went to see a neurologist first on his own for this issue of having trouble finding his words. You know, he had an MRI, had testing that at the time had looked okay, though the neurologist had wanted to do more tests and have him come back. I think my dad came home, told my mom that everything was okay and so nothing went anywhere. But then over the following and a half, we started to be able to see the word finding difficulties where he would get stuck mid-sentence, we would be helping him finish the sentences. And so ultimately, the next time we went back to the neurologist, you know, my mom and I went with him, and I think at that point, the deficits, his trouble finding words was much more obvious. He did then have more specialized scans, you know, to confirm the diagnosis, which ultimately which is one of the language types of frontotemporal dementia. So frontotemporal dementia comes in, let's say, sort of three main types. My dad had the language-based type, and at least, you know, from the news we've all heard, you know, Bruce Willis, too, was diagnosed with aphasia before he got a more specific frontotemporal dementia diagnosis. More people actually have what's called behavioral variant frontotemporal dementia, than language problems. There's really pronounced changes in personality or behavior, someone acting really differently than they ever would have before. And then less common, there's people who have sort of movement subtypes where they have trouble with walking, falling a lot, and that's their initial presentation of a different type of frontotemporal dementia. So, you know, looking back now, we know that it took us sort of several years to get to the diagnosis of really explaining meaning why we were seeing the changes that we had. In addition to looking at depression and sleep apnea, we had him tested for hearing loss, thinking that, oh, maybe it's hearing that's the problem. He'd been working as a dentist using drills, using loud equipment. Looking back now, we actually laugh that, my dad had actually gone back and returned the hearing aids. And now we realized like, he was right. He didn't need the hearing aids. That yes, maybe he had mild hearing loss, but actually, the problem was a language speech issue that was arising from the brain. So that's sort of where our journey started. For me that his diagnosis aligned with around the time I was graduating from medical school. That was back in 2009. He ultimately lived with frontotemporal dementia for about 13 years. And we know that the average life expectancy, it certainly varies, from seven to 13 years. So he lived at home under the care of my mom for a very long time. Over that time, of course, there were a lot of challenges. I probably can't even offhand think of all of them. I'm happy to answer specific questions that you have. But I think for us, of course, early on, and I see this in my patients in the memory clinic too, it's the challenges around what can or can't he do. work was sort of everything for him. He had provided not just for his immediate family, but even a lot of extended family that he had supported in immigrating to the United States through his work as a dentist. So we had to phase him out of working. We had to phase him out of driving and really support him through all that. I think one thing that was challenging in all of that for us too, was that for a long time, he had insight into his symptoms and what was happening. everything about the exact diagnosis, but we know that he knew he had a neurodegenerative condition from just a couple of interactions, books that he would see us, you know, reading, etc. That he had a sense of what was happening and you could see him, you know, visibly frustrated if he was trying to communicate and he couldn't or we couldn't understand what he was saying. And of course, then beyond that, right, he started over time to need more help with, you know, managing medicines home and then over time with just daily activities. So we, as a family, had to get more and more involved in his personal care, toileting, bathing, things that initially were hard, but over time we honestly learned how to do it well and navigate how to support him with that. And of course, through all of that, support my mom who was his primary caregiver.

[Dr. Mia]: 10:08

Thank you so much, Halima, for doing the impossible, which is to summarize 13 years of journey into five minutes. But I think one thing that is particularly relevant for families and loved ones who are either diagnosed with frontotemporal dementia or in the journey of being diagnosed is just kind of how different in terms of the availability of treatments and caregiving support there are for people with FTD. I think a lot of people know and are aware of Alzheimer's disease, but there is really not a whole lot of awareness about how FTD, what is FTD, the different variants, and why is it different than people who have Alzheimer's disease. Can you maybe just talk a little bit about what are some unique FTD related caregiving needs that maybe people even in the healthcare profession don't know about?

[Halima Amjad]: 11:07

Yeah, well, I think you've highlighted some of the challenges already, which is just right, the awareness of not just the general public about these other types of dementias, but even health care professionals. You know, people will ask me if we had an advantage, for example, in getting a diagnosis because I was in medicine. Honestly, thinking back in medical school, I think and PowerPoint slides we learned about. So even for me, you know, I had to learn, you know, what is primary progressive aphasia? What is that type of frontotemporal dimension sort of wrap my head around it? Now, part of, I think the challenge is the unique symptoms that come up, that again, they're often subtle. We often think of dementia as memory loss. as memory loss, we don't think of dementia. So knowing that it might be slight personality changes that are often misdiagnosed as depression or anxiety or a midlife crisis. The language symptoms are often subtle. Like I said, my dad noticed his symptoms really before it was noticeable to anyone else. Or if someone's having, you know, slight changes in the way they walk. And I think compounded by the fact that the symptoms aren't memory loss early on is the fact that it is again an earlier onset dementia. So we often think of dementia, our families will think of dementia if someone's older, but if someone's younger, you know, in their 40s or 50s, it's not something that we automatically think about. And that way, I think it's natural to think about things like depression or hearing loss or other conditions first. But in terms of caregiving, I think the fact that the symptoms are different also make it more challenging. You know, learning how to communicate. In some ways there were advantages actually for my dad for example, he reverted a lot to using his native languages as opposed to English though he was fluent in English and actually as a result me and my siblings are now much more fluent than we had been because we had learned hey that if we speak to him in Punjabi he's actually more likely to understand us and respond to us. For people who have behavioral variant FTD, gosh the behaviors can be so difficult to manage. And even for us, though my dad had primary progressive aphasia, over time, he did have behavioral challenges where we had to be careful at home if there were other people around, is he properly dressed? If he was out in public, there was a phase where he could only speak two or three phrases. Lucky for us, they were Punjabi phrases, so people didn't always understand what he was saying, but he would just say them to random people or point and say something. what he was actually trying to say, but right from a, you know, social appropriateness standpoint, right, people would look at him or react. And so that gets, you know, challenging to manage as a family. And certainly because of that, it can also be very socially isolating. With the early onset, and we certainly had this challenge, is that the person with dementia may not be able to work anymore, right? They weren't, you know, my dad retired early and it wasn't planned. It was because because of a disability. income. Often if the spouse is working, they have to cut back on hours if they're going to be the primary caregiver or stop working entirely or start putting a lot of their own income into, you know, paying for private caregivers. And there are studies showing that FTD has higher costs than something like Alzheimer's disease, and I think a lot of it is that kind of economic and in their 40s or early 50s who have the disease, oftentimes they're raising young children. So at the same time that they're caring for a parent, they're raising young children in the home. So again, a challenge that I think is unique for that's unique, not just to FTD, but I think even early onset Alzheimer's or early types, other early onset dementias. We talked a little bit about the fact that there's sort of less awareness and understanding, healthcare. So there's challenges in getting a diagnosis, but I certainly see that people, even once they have a diagnosis, right, if the person's in the hospital or seeing a specialist, that they have no idea actually what the underlying condition is and how to interact with the person, that they should be interacting and including the caregiver, you know, closely in all the treatment planning and visits. And in general, to that point, I think a lot of people in the FTD community feel what they're going through. And so there's also a lot of social isolation. Other people don't understand what you're going through. They don't know how to interact with the person. There's certainly a lot of stigma around the symptoms that the person has. And so people really end up kind of pulling in. And then I think at least one other thing that often jumps out to me as a challenge is the fact even just healthcare access and insurance that for people who are younger, Medicare yet. So there's often that process of trying to get through disability and getting on Medicare. But even then, a lot of people find that because their person, their loved one with dementia is young or they might have behavioral issues, that it's hard to find the support they need. Even for my dad, I know we went to an adult day center to check it out. And I think my mom was like, everybody's really old. He was in his early 60s. And similarly for families needing to access assisted living facilities or nursing homes, they're really catered towards older adults or Alzheimer's dementia, and they're not always equipped to handle younger people who have symptoms that are different.

[Dr. Mia]: 17:25

Yeah, it's just so many systemic issues in terms of support. And I think your dad also probably had the additional intersection of being an immigrant and his first language not being English. And how did you guys learn in terms of communicating? Because I know I have certainly sent some of my patients and their families with language I'm just curious, like, what did you guys find to be helpful in terms of both communication techniques but also, like, who were the type of specialists or ancillary support services that were helpful?

[Halima Amjad]: 18:12

Yeah, so we did, you know, we primarily worked with a community neurologist. And I will say, you know, we did access at least once, you know, a big academic medical center, but then found that actually the community neurologist was probably more empathetic and, you know, we connected with him. Well, he was very, um, you know, just understanding of our situation. And so found that he provided great support. the diagnosis for us, which isn't always the case when people are even seeing a neurologist. We did work for a time with a speech and language pathologist. I think they can be helpful, but even there, I think it's finding someone who has an understanding of the condition, because it is a neurodegenerative disease. So it may not be the same as stroke, where there may be some hope for recovery and improvement. In this case, we know that unfortunately it's going to get worse with time. on are there things we can maintain? Are there communication strategies that families can learn? And I think that's where it can be helpful. I know for a time, you know, my dad did like going on the computer and using the software and the programs that the speech and language pathologist had taught him to use, which were English based. And I think we're fine for him. But I think for us, and you know, I don't think we engaged with the speech pathologist as much as we could have in communication techniques. because of where he was at the time, that at that time he could still speak but would get stuck. I think a lot of the adaptations we made over time were just, again, things that we learned on the fly or things that we learned from support groups, especially online support groups. So again, accessing like communities of people who are going through the exact same thing you are. That's where I think we learned certainly that, you know, my mom knew him and his needs better you know, what he was saying. He would also use a lot of visual gestures, so pointing, gesturing. So I know that's something I will share with, you know, caregivers of patients who have dementia and communication issues. You know, I mentioned already, trying to go to what is the language he's most comfortable in and us adapting to that as opposed to forcing him to speak or understand English. And then, you know, certainly speaking in shorter sentences. And then, you know, I think in addition it's also just that general, you know, kind of nonverbal communication, which especially over time, you know, I would say my dad lived, again, for 13 years diagnosed with the condition, but for many, many years with zero words, you know, so he went through a phase where he had a couple of phrases, but then over time, even those phrases were gone. For a time, he would actually just even communicate through like giggles. So, you know, his giggles and his smile lasted longer. But for example, if we sat him on the toilet and then gave him some time to use the toilet, like he would giggle and that was our way of knowing, okay, he wants to get up now. And certainly, you know, from an emotional connection standpoint, right, still smile at each other, hold hands. Those were things that I think lasted throughout. It was really only in his last year that I learned that, you know, even the smile, you know, when someone has more end stage dementia. And even in my dad's case, and again, I think this might be more unique to the language-based dementias, like primary progressive aphasia, is that even over time, in the last couple of years, he did lose that laugh. And actually for a time, we realized, replaced it with a cough. We would realize that, again, he's trying to communicate, but just can't really vocalize. And so again, that kind of learning him over time. And then just being sort of more attuned to his needs in general of knowing, okay, if we drank water and now we need to use the restroom, maybe he needs to use the restroom. And you know, certainly just, you know, my mom paid a ton of attention to his skin, how he looked, right? Has he had a bowel movement? To just have a sense of could there be something that we can't readily pick up that's making him uncomfortable? So again, being able to understand his needs when he couldn't communicate.

[Dr. Mia]: 22:42

Absolutely, and I think your mom was definitely his voice in the world in many ways and it's a blessing to have someone who understands, a partner who understands your dad so well. Can you talk a little bit about what the Association for Frontal Temporal Degeneration is working on in terms of supporting families who are going through FTD?

[Halima Amjad]: 23:09

Yes, so I absolutely love the AFTD. That's why I joined their board. And they've been really a key part of our family's journey. That again, we didn't really know much about the disease, you know, before my dad got the diagnosis. So for us, they were a source of information. So they are really the only organization in the United States that's solely focused on frontotemporal dementia, because even international families and patients end up looking for, right, who has the information and community that we need. And so the AFTD is focused on frontotemporal dementia and really all the areas that are important in, not just driving research for ideally a cure, but supporting communities, providing the education and support services that families need. And so in terms of their mission, and certainly been a growing organization over time, a lot of people of course are interested in research, especially families that know that they have genetic FTD, where there's a lot of research. So the AFTD directly does fund research and also does work to bring researchers together, researchers together to talk to each other, to talk to families, to better understand everybody's needs, what area science is or should be moving in. He does a lot of work on support and education. Again, I think that's where my family really accessed them, that we attended caregiver conferences, which were a way both to get information, but also just to connect with others. Look, I still have vivid memories of the first conference I went to with my mom, because just going in and seeing other families there was just so emotional to see that, gosh, there's other spouses, other young adults that are going through the same thing, because again, there's usually, you don't know other people through it. And within the education, they're also doing increasingly more education for health care professionals, you know, for neurologists, for nursing homes, for primary care providers, just to increase awareness. On the support side, there's a helpline, there's support groups. So my mom attended an in person support group for a time. But as you expect in dementia, it got harder to leave my dad alone at home, or to find someone to sit with him while she would go. So then we actually joined a lot of online support groups. And a lot are supported by the AFTD or run by the AFTD. So I actually made my mom her Facebook profile explicitly so that she could join these Facebook groups. And I know she found them very helpful that even if she didn't always comment, just again, reading other people's stories, seeing that other people were going through the same thing, like, gosh, we got ideas for my dad. Like when he started going outside a lot, we got the idea of door alarms, changing locks, et cetera, from people in those support groups. is a big piece for some of that's awareness in the healthcare community and of public awareness. I know that scenarios where certainly we've all been very appreciative of Bruce Willis's family being willing to go public with that explicit goal of raising awareness around FTD. And then they also focus on advocacy. So advocating for families, for research, for the support services that are so lacking on a societal level. And I think broadly kind of within all of this, and I've mentioned it already, the community that they foster, that because it is such an isolating illness, it can come with a lot of unique challenges, just kind of building that village, that for us, we've certainly leaned on family, my mom being the main one, but also even over time, extended family, paid caregivers, but then we also kind of leaned on this larger network of families facing FTD, both again, Like I know my mom has connected with other, for example, Pakistani caregivers of people with FTD where they're living in a country with even less knowledge or resources. And we've been able to connect with other families, again, fostered through some of these AFTD led support groups.

[Dr. Mia]: 27:26

That's amazing and it's just such important work to have this knowledge out there and the community can form anywhere and across very broad distances but it's just kind of getting the information out there that these communities exist even if they don't necessarily happen in one's local community.

[Halima Amjad]: 27:52

Yeah.

[Dr. Mia]: 27:52

Anything you would like to kind of highlight? your professional development and career in being a dementia specialist, anything that you wanted to highlight in terms of research that are inspired by your personal journey and your family's journey with them.

[Halima Amjad]: 28:12

I mean, I would say in general, a lot of my research has been sort of guided by our family's experience. You know, so some of my earliest studies were looking at just how many people with dementia are driving or working, because I knew that, you know, my dad had done that for a time before we had him pull back. And doing some of that work got me more interested in, again, those challenges around diagnosis, knowing that a lot of people for a year or multiple years navigating the world with undiagnosed dementia. And what does that mean for them? That right now, for really all of these neurodegenerative dementias, we don't have effective treatments, but is diagnosis important nonetheless? For our family, we look back and we say, we could have saved him some other evaluations. My dad wouldn't have expanded his dental practices, right? If we knew what was coming at the time. work at trying to identify, you know, what are the benefits of diagnosis for people and families who are facing dementia? Are there things that we can highlight, you know, in terms of bad things that are there bad things that are happening to people who have undiagnosed dementia, right? Thinking about are they getting into car accidents and making, you know, financial errors or mistakes? Are they getting hospitalized? When we know that, you know, the hospital is not a dementia. And then certainly I'm starting to think more about, aside from making a diagnosis, how do we better support people than at the time of diagnosis? Because even now, you know, and even as a dementia specialist myself, I don't know that we always do a great job of, you know, fully explaining what's coming. You know, we don't know the pace of what's going to happen, but we have a general sense of what families might need to prepare for. on information that we read online, support communities, which are great resources of information, but we know that the medical system is the first touch point. And so how can we do a better job within the medical system of not just giving a diagnosis and saying, there's no cure, I'll see you in a year, versus thinking about what are the things we can do to better support people on the journey, that there are things that can make things And on that side, you know, when I look back on my family's journey, I think it was sort of as good of a journey as you can have with dementia. But that's also knowing that we had, you know, family resources, financial resources that not everybody has. And that I think goes beyond just research. But I think to what you are bringing up, Mia, that idea of right, there's a lot of systems issues, way that we support or really don't support, you know, individuals and families who are who are facing dementia.

[Dr. Mia]: 31:22

Yeah, absolutely. And I think I personally struggle a lot with FTD and early onset Alzheimer patients and families because I know that it's an additional barriers and grief that comes with such an early diagnosis. People were often, just like your dad's case, had to stop working earlier than they anticipated. was recently diagnosed with ovarian cancer and she also is younger than 65. So we had to go through the disability application process which is really hard for people who are even been

[Halima Amjad]: 32:05

Hmm.

[Dr. Mia]: 32:06

in the country for a long time, much less people who have even limited language skills and resources than we have. But I know from the, as the disease progresses, what you have mentioned in terms of traditional respite type of support, like whether it's in a nursing home or a day center, really just don't fit the people who are younger but still have deficits. And I can only say that, you know, perhaps fool them into trying to go as a volunteer, quote unquote volunteer,

[Halima Amjad]: 32:42

Yeah.

[Dr. Mia]: 32:42

but that oftentimes really doesn't work. So you know, it's about thinking through kind of throughout the, throughout the journey. And this is not to also forget the people who really can't find paid caregivers who can

[Halima Amjad]: 32:59

Mm-hmm.

[Dr. Mia]: 32:59

communicate in a language that the person with dementia can understand. We see that a lot in our Latino communities where there's just such a lack of paid caregivers who are bilingual. And so families end up relying so much on their informal network of people, which has its benefits and downsides. It really kind of puts again the burden on the families because there's so little kind of societal or even medical support out there.

[Halima Amjad]: 33:33

Yeah, I agree. You know, and I will say for us, like I said, in my dad's case, at least, you know, he was fluent in English, so he wasn't someone who was never fluent in English. But I do think that's where to even sometimes still giving it a try, you know, if someone can afford and access a paid caregiver, because for us, I think several paid caregivers actually became like family, you know, they learned the few Punjabi phrases my dad would say and even say them. And I think communication, right? So even with the paid caregivers smiling, holding hands, they could take him out for a drive, take him to the store, take him to McDonald's, so still help him do the things that he liked to do, where even if we're not speaking the exact same language, there's still that human connection that can be made.

[Dr. Mia]: 34:24

Well, thank you so much, Halima, for this great conversation and thank you for all the work that you're doing both in your research, clinical, and advocacy role. We'll put some of the show notes in terms of the FTD Association for Frontal Temporal Degeneration as well. And see you all next time. Thank you.