Additional Resources Mentioned
Takeaways
Tip 1: Learn More About Dementia and Push to Dig Deeper
Tip 2: Find Your Specific Diagnosis Community, Resources, and Support
Tip 3: Monitor Disease Progression and Prepare
Tip 4: Investigate Clinical Trials
Tip 5: Understand the Genetic Risk Associated with This Diagnosis
Read More in This Blog
https://sueryansolutions.medium.com/53-why-the-right-dementia-diagnosis-matters-five-essential-tips-alzheimers-and-other-dementias-b6afe1179898?postPublishedType=repub
Full Episode Transcript
Nancy Treaster
You’re confident that your loved one has dementia, but do you ever wonder if they’ve been diagnosed with the right type of dementia or if it even matters? In this episode, Sue and I are talking with Esther Kane, a registered nurse and the Director of Support and Education for the Association for Frontotemporal Degeneration more commonly known as the AFTD. And we’re talking about why understanding the type of dementia your loved one has opens windows to support, care, and really community. We’re sharing five tips.
Sue Ryan
As a director of nursing in multiple memory care facilities, Esther has spent her entire career supporting and caring for individuals living with all forms of dementia. In Esther’s role at AFTD, she works to advance early, accurate FTD diagnoses and improve the quality of life for those impacted by the disease. Esther, welcome to our podcast.
Esther Kane, MSN, RN
Thank you Sue and Nancy for having me today. You know, accurate early dementia diagnosis is so essential and it matters to so many families. It can make such a difference in how families navigate a diagnosis. And it’s really important to understand that not all dementias are the same. Whether you are navigating Alzheimer’s disease, frontotemporal degeneration, Lewy body dementia or vascular dementia, getting an accurate diagnosis matters.
And you might be asking yourself, why does it matter? What’s the difference? Why should I go through further testing? Why should I keep pushing? And I’m here to tell you today that the correct diagnosis can connect you with education, support, and research opportunities.
Nancy Treaster
Sue and I both have dealt with multiple types of dementia in our family caregiving. And it is important that you get the right diagnosis. So let’s start with tip one, because if you’re concerned about the diagnosis and whether you have the right diagnosis, then learn more and push to dig deeper, because sometimes you do need to push.
Esther Kane, MSN, RN
I think today with all of the changes in blood-based biomarkers and Alzheimer’s disease, we’re really dealing with a whole different climate. I’m sure for both of you and your experiences and even for me, 10 years ago, it was hard to figure out what type of dementia your loved one had or what the type of dementia was that you were dealing with. But today, in the age of these FDA approved blood-based biomarkers, more and more people are being tested and they’re finding out they don’t have Alzheimer’s.
And so if I don’t have Alzheimer’s, what do I have? What am I dealing with? What’s going on? And so, you know, it’s really important that people dig in, that they ask questions. You have to talk to your doctor and tell them what you’re experiencing. Make sure they understand that Alzheimer’s isn’t fitting. This diagnosis is not fitting what I’m seeing in my loved one. Their memory is fine. Their memory is not impaired. This isn’t the problem I’m dealing with. And really start to have those discussions early.
For many families, it means they need to advocate. And that can be really hard, because you feel like the doctor should just know, right? The doctor should just tell me the diagnosis I have. But sometimes that requires further testing. It requires further investigation. And it requires resources that don’t always exist. So very often, families have to advocate for that diagnosis and keep pushing to get past mild cognitive impairment or a dementia diagnosis to figure out what’s really going on because we know that dementia is actually a break umbrella term, right? Dementia is not just one set of symptoms or one type of disease. It covers a broad band of diseases. And so understanding what it is you’re dealing with is gonna help you do better.
Sue Ryan
Well, Esther, you mentioned multiple types of dementia. You mentioned this umbrella. And so once we dig deeper and once we get the right diagnosis, we then need to find the support and resources that are appropriate for the particular diagnosis. So tip two is to find your specific diagnosis, community, resources, and support.
Esther Kane, MSN, RN
So let’s talk for a second about some of those different types of dementia and what I’m talking about when I say dig deeper. So there’s Lewy body dementia, which presents very differently, very often. There’s a lot of movement changes, hallucinations, a very different symptom onset. There’s Alzheimer’s disease, which most cases of dementia are Alzheimer’s disease. About 60 % of all cases of dementia are Alzheimer’s disease. Then there’s frontotemporal degeneration, which makes up its own little subtype of forms of dementia with primary progressive aphasia, behavioral variant FTD, corticobasal syndrome, progressive supraventricular palsy, and even sometimes FTD with ALS. And then we have vascular dementia. And those four make up a majority of all forms of dementia, but they’re not even all of them. There’s even more that’s out there that you can dig into and understand. So once we know what type of dementia it is that you’re dealing with, you have the opportunity to kind of dig in more and find a community.
You’re able to find resources, you’re able to find support. So what kind of resources are out there? Well, there’s helplines that are educated in your form of dementia. They understand what you’re dealing with. They understand the symptoms. When you call, you don’t have to explain the disease to them. They know what you’re dealing with and what you’re experiencing. There’s support groups that are a community of people who understand what you are experiencing. I can’t tell you how many families I have talked to that go to an FTD support group.
and they feel like for the first time, people actually understood what I was talking about. I didn’t have to explain it anymore. They got it. They understood. Not only did they understand, they knew the support and resources that were available to me in my community. And that made such a difference for me. There’s also grant programs. AFTD, for example, has a Comstock grant program, which really supports caregivers and persons diagnosed. But these are just one of the many grant programs that are out there.
There are many that are available that families can take advantage of to help offset costs, to give them respite and help support the caregivers. And so all of the organizations that are out there, whether it’s AFTD, the Lewy Body Dementia Association, the Alzheimer’s Association, there’s Hilarity for Charity, and the list goes on. I can sit here for a while and talk about all of the different supports. They’re really out there to support you and to help you understand what it is you’re dealing with, help you understand the symptoms, help you find community help you understand, and really help you be able to navigate, which can be a very difficult diagnosis to navigate.
Nancy Treaster
You know, and particularly, I think if it’s not Alzheimer’s, a lot of people are sort of stopped on, well, now what do I do? It’s not Alzheimer’s, right? My husband had frontotemporal dementia and it is amazing when someone gets a diagnosis that swirls around in my friend and family community and they’re like, you need to call my sister or you need to call Nancy because it’s not Alzheimer’s and that’s throws everybody for a loop. So I think what we’re talking about here is it’s really important to find your people that can help you and support you in a unique way, particularly in any whatever kind of dementia you have. And I don’t want to shortchange Alzheimer’s. My father-in-law had Alzheimer’s and Sue’s husband had Alzheimer’s and it’s got its own set of challenges. Just finding your community is important. So let’s not shortchange that.
Sue Ryan
So one of the things that’s really valuable is that basically every diagnosis has a website. And when you get the diagnosis and you go out and you do a search, you will find support groups. You will find the website for support. And even if that takes you to the Alzheimer’s Association website, they provide support for a variety of different types of dementia. So support groups are out there and are available.
Esther Kane, MSN, RN
I think one last thing I think that’s really important here is I think for families, very often, they feel like they’re getting, they’re around Peg being shoved in a square hole, right? And so it’s just not fitting. It doesn’t feel right. And I think it’s actually that frustration that makes them dig deeper and makes them want to learn more. At the same time, there are other people who don’t dig in more and understand the disease that they’re actually dealing with. And when certain symptoms come up, they’re so confused and don’t know how to prepare. They don’t understand. They’re caught off guard. Why are they being so disinhibited? I don’t understand why this is happening. But it’s because they don’t understand the symptoms of the type of dementia that they have. And so when you kind of find your community, very often families feel like they found the right size hole for the peg that they are. So the square peg found the square hole and it all made sense for the first time and they fit. And it makes such a difference in how you navigate a disease.
Nancy Treaster
So true, and you know that’s a perfect intro into tip three, which is to monitor disease progression and prepare, because once you have the right diagnosis, you’re now monitoring the progression with a different lens.
Esther Kane, MSN, RN
Yeah. So I think every type of dementia has different symptoms, different disease progression, and requires different supports and programs, like I just said. We can’t try to treat somebody with Lewy body dementia the way we’re going to treat somebody with FTD. We can’t treat somebody with Alzheimer’s disease the way we’re going to treat somebody with primary regressive aphasia. They have different symptoms. And understanding these symptoms allows for providers, as well as for families, to know how to care for the person with the disease.
And so no one can really manage a dementia diagnosis alone. It is so important that after a diagnosis, families start to build their care teams. Find the helpers, find the people who understand what you’re dealing with and bring them alongside. Get early referrals, talk to speech language pathologists, talk to physical therapists, occupational therapists, social workers. You don’t understand the full scope of what some of these professionals can do to support you, help you understand the behaviors maybe that you’re seeing, help you look at the environment to make sure the environment is best suited for the person diagnosed, as well as improving communication. It’s just, there’s a long laundry list of support that these people can provide to you. So really build your care team. But in order to build your care team right, and I’m so sorry ladies, we’ll cut that, really build your care team and build a successful care team, you need to know the type of dementia you’re dealing with, and they need to know the type of dementia and symptoms that you’re dealing with, so they can best help support you. In addition, there’s access to additional support in your community. There’s a lot of programs out there. Nobody needs to navigate dementia diagnosis alone anymore, whether you’re accessing palliative care or supportive care programs, Guide, which is the new Medicare model, which has been very helpful for many families, or additional dementia programs at your major academic centers.
There are systems and things out there to help you navigate this disease.
Sue Ryan
Esther, you brought up some really good points. And one of the things that Nancy and I have created, because what we found on our journeys and we still find missing is that we didn’t have a roadmap. We didn’t know what to do. And we put together a complimentary guide that’s out on our website and we’ll have the link to it in the show notes. But we created a roadmap and it’s a 20 step roadmap because we wanted to have people go from feeling overwhelmed on their journey and and being bombarded with things and not knowing what to do and not having clarity to being basically what we call underwhelmed to be able to understand, okay, what’s important now in the beginning? And then, you know, there’s going to be a messy middle. What do we need to focus on now as we’re asserting more control? And then that later on when we’ve really asserted all the control. And so one of the things that we’ve done in support of that is to create that guide so that people can understand what to do at each phase of the journey. And so that kind of leads us into tip four, which is when you understand the type of dementia you have, this also can open really valuable doors to early access for disease modifying therapies. So tip four is to investigate clinical trials.
Esther Kane, MSN, RN
You may be asking yourself, is a disease modifying therapy? And they’re new, right? We didn’t have disease modifying therapies really in any of the dementia spaces 10 years ago. But over the last year or two, we’ve really started to better understand what the diseases are. Research has really been focused on what we can do to help stop these diseases or slow down progression. And so right now there are clinical trials for disease modifying therapies that target the underlying cause.
And so you have to know what type of dementia you have to make sure you’re getting the right disease modifying therapy. If your therapy is attacking amyloid, but you don’t have amyloid in your brain, it’s not gonna help you. And so it’s really important that you understand what it is you’re dealing with. And once you understand, then you’re able to open those doors. So the exact diagnosis that you have, it creates opportunity. It creates opportunities for you to have early access to clinical trials and opportunities to participate in additional research.
And you might be asking yourself, where do I find these trials? How do I even know what’s available? And there’s a lot of resources. For example, in the FTD space, there’s the FTD Disorders Registry, which is a direct to patient registry that allows you to see what clinical trials and research opportunities are available in the FTD space. There’s also clinicaltrials.gov. And many of the Alzheimer’s Disease Research Centers across the country are doing a lot of research in a lot of these spaces. And so you can see what’s available to you in your local state or community.
Sue Ryan
And Esther, these are really valuable points. And what we’ll put in the show notes is links to where these are.
Nancy Treaster
Absolutely. Also, we’d be remiss if we didn’t mention that one of the things we highlighted in the spring of this year was there are a lot of research studies for dementia family caregivers. And what that gives you access to is some of the earliest sort of latest thinking in terms of training education for family caregivers, as well as other resources. We so when I discovered a whole world of research studies for dementia family caregivers and lots of really cool things that you could get access to because you participate in those studies. So we’ll also have links for those types of things as well. All right, well, let’s move on to our last tip, which is tip five. I find this incredibly interesting as you move through the different types of diagnoses, but tip five is to understand any genetic risk associated with this diagnosis.
Esther Kane, MSN, RN
So not all types of dementia have genetic implications or are caused by a genetic change in their DNA. These changes can vary. So some forms of genetic of dementia have what we call risk factor genes. And those genes can put you at higher risk of getting the disease, but does not mean that you’re going to get the disease. And a disease like FTD, where it’s autosominal dominant.
In a family, if they do have the genetic form of FTD, which is only about 20 % of cases of FTD, but if they do have it, it can go from generation to generation, which means your children would have a 50 % chance of inheriting the gene that caused FTD. So understanding the type of dementia you have helps you better plan for the future, helps your children and your family plan for the future.
So in FTD, unlike other forms of dementia, which I think is really important to understand, there is this genetic risk, which is a little bit higher. But many of the clinical trials that are happening right here are targeting these families in particular. And they’re providing opportunities for them to participate and engage. So understanding your genetic risk, it creates opportunities. It creates opportunities for planning. It creates opportunities for family planning. And it helps your children be able to prepare for a better future.
Sue Ryan
Esther, thank you so very much for joining us today. You’ve introduced a variety of topics of great value to us in doing research and understanding how to provide the best care and to give the best experience for our loved ones. Do you have any final comments you’d like to share with us?
Esther Kane, MSN, RN
Well, one, I want to thank you, Sue and Nancy, for talking about this topic today. I think it is such an important topic. It’s important for people to understand. I can’t tell you how many families I’ve talked to that just said to me, I didn’t even know there were other forms of dementia. I didn’t know that there was a different community I could access. I didn’t know there were clinical trials. I didn’t know that these symptoms that my loved one was having was part of their disease. So thank you for bringing attention to this today and really talking about it.
I think it’s also really important to understand that the type of dementia your person has can open doors to community, research, and knowledge. So dig in deeper, push, advocate, learn. Because by doing so, you’re going to be able to create a community that you need to be able to navigate the future. For example, the Association for Frontotemporal Degeneration, or AFTD, is that community for those diagnosed with FTD.
Whether you are searching for support resources to obtain an accurate diagnosis, clinical trial opportunities, or more, AFTD is here for you. You can go to our website at t-h-e-a-f-t-d.org, the aft.org, to learn more and find resources. Have a wonderful day.
Nancy Treaster
Thank you, Esther, so much. And let’s summarize. So today we talked with Esther Kane about why it’s important to get the right diagnosis. And she educated us on all the different things we could leverage if we had the right diagnosis. We talked about it, and we shared five tips. The first tip is to learn more about dementia and push and dig deeper to make sure you get the right diagnosis.
Sue Ryan
Tip two is to find your specific diagnosis community, resources, and support.
Nancy Treaster
Tip three is to monitor disease progression and prepare.
Sue Ryan
Tip four is to investigate clinical trials.
Nancy Treaster
And tip five is to understand the genetic risk of the specific type of dementia your loved one’s diagnosed with. Now, if you have tips around getting the right diagnosis, please share those on our Facebook page or our Instagram page. The links are in the show notes. For each podcast, we have a matching blog where we’ve effectively taken notes for you. So just look at the number of this podcast and then go to the blog page on our website and find the blog with the same number.
Sue Ryan
Thank you again so very much for all you brought and for all you do for the community. We really appreciate you and as we always say:
We’re all on this journey together
Nancy Treaster
Yes, we are.
