Bringing Innovation and Hope to Alzheimer's and Dementia Care: Eleonora Tornatore-Mikesh, Stephani Shivers and Dr. Anne Kenney of CaringKind

Michael Carrese: Hi everybody, I'm Michael Carrese welcoming you to Raise the Line with Osmosis from Elsevier, an ongoing exploration about how to improve health and healthcare. 

It's estimated that seven million Americans are living with Alzheimer's disease today, and unfortunately, that number is expected to grow very quickly. That means that more doctors, nurses, and other healthcare providers will be dealing with patients and their loved ones who need help sorting out the many challenges the disease presents. 

Well, today on Raise the Line, we want to focus on the community-based groups that work in partnership with providers to support the care plans that are developed for these patients and also understand their broader role. 

To do that, we’re turning to CaringKind, one of the nation's premier organizations focused on Alzheimer's and dementia caregiving. Based in New York City, CaringKind has been working for forty-five years with community partners to develop information, tools and training to support individuals and families affected by dementia. 

With me are CaringKind’s CEO, Eleonora Tornatore-Mikesh and Chief Innovation Officer, Stephani Shivers and we're also joined by Dr. Anne Kenny, an advisor to CaringKind and part of the integrated team. 

Before we get going, I'd like to note that long time Osmosis Advisor, Alan Patricof, is responsible for connecting us with CaringKind. So with that, let me thank all of you for coming today. It's great to have you.

Eleonora Tornatore-Mikesh: Thank you so much. 

Stephani Shivers: Great to be here.

 

Dr. Anne Kenny: Thank you for having us. 

Michael: So, Eleonora, I'd like to start with you and have you add to that very brief description of CaringKind. When people ask you what it's all about, how do you describe its mission and its work?

Eleonora: Sure. So we were actually originally founded in 1978 as the Alzheimer's Society. We were one of the nation's first and oldest charities focused on dementia caregiving, so we're true and true a caregiving organization. And then in 1985, we became one of the very first Alzheimer's Associations, and in 2015 we decided to retain our own independent charity status. We're really a social work organization, so our mission is to make sure to create, provide support to family caregivers, those dealing with Alzheimer's and disease and related dementias, but also creating interventions and almost a lab of sorts for individuals with the disease so that post-diagnosis, they know where to go and what to do.

Michael: Examples are always great, so if you were to pick something that represents the impact you folks have and the approach you take -- and you could do patient and family and caregivers or whatever combination -- what would you offer up?

Eleonora: Top of mind? Earlier last week we did an event called Caregiver Champions, which is bringing like-minded people together that have Alzheimer's in their family. Raising concern and awareness is one of our pillars and we know that people don't speak about Alzheimer's like they do other diseases like cancer and heart and they're much more reserved oftentimes.  So, this young lady, thirty-two years old, was able to, for the first time after being silent for 13 years talk about her situation. She and her sister have been caring for both her parents with Alzheimer's disease. One got the diagnosis three years earlier than the other. 

And so I would highlight that we are not only able to give them sort of an advocacy platform, but also then putting them into support groups so that they can learn how to function, getting free legal and financial advice through educational seminars, and just learning how to navigate the day-to-day life from something that seems very simple -- like taking somebody to a doctor's appointment -- all the way to what medications should they be on or not be on. On all of those sort of components CaringKind becomes a lighthouse to those families.

Michael: And a lighthouse is needed. 

Eleonora: A lighthouse is needed.

Michael: There’s just so much to figure out. It really is a profound change in a family's life. So Stephani, what are some of the most innovative programs and services that CaringKind offers?

Stephani: I would say that at this point we've been in existence for a long period of time and about, oh gosh, maybe 15 years ago or so, CaringKind was really on the cusp of initiating services for people in the early stages of dementia. That went through a little bit of a hiatus and thankfully post Covid, we were able to really relaunch those services and that is a real differentiator for us. 

We have a number of services and programs that are geared for people who have been recently diagnosed and who are in their early stages. One of our hallmark programs is called Cognitive Stimulation Therapy, which is actually a very well researched and evidence-based intervention. Technically it's an intervention. It was created at the University of College London and that is a program that really has the same outcomes as some of the cognitive enhancer medications that we use now.

What cognitive stimulation therapy does is it's a small group program. People meet twice a week for over the course of eight weeks, and it's really about stimulating the various processes that people have that are outside of memory. So, it focuses on helping people to regain their confidence in sharing their ideas and their opinions and their insights because those things are retained. 

What ends up happening, particularly through that program, is there's a sense that people have of coming back into themselves. Oftentimes people are diagnosed and there's certainly loss and shutdown and stigma and there's a self-isolation that happens. When people are invited into a safe learning environment with their peers, a light bulb goes off. It's really a wonderful program. And then to see how people actually improve their cognitive abilities…you see them improve their communication skills over the course of the eight weeks. And so I would say that’s one of the most innovative things that we have been doing now for about three years.

Michael: That sounds terrific. I know that partnerships are also super important to you guys. So can you touch on a couple that you think are particularly interesting or impactful?

Stephani: Because dementia lives within the medical system, we have to really have honed relationships with the medical communities. And so connecting with primary care physicians, connecting with the neurologist and the diagnosing parties…those are certainly critical relationships for us as a provider. But beyond that, there are also significant relationships that we have with researchers and with other community-based organizations particularly that are really trying to advance different types of solutions for people who are living with dementia and their family members. It's not just about connecting with the medical community, but it's really trying to go upstream to connect with those influencers, those policy makers, so that we can really proactively activate change in a more comprehensive manner.

Michael: Because obviously it's such a multidimensional set of diseases impacts, so you do need a universe of partners, I would think, to get it all done. 

Stephani: Absolutely. 

Michael: So, speaking of relationships, Dr. Kenny, what advice do you have for providers creating relationships with groups like CaringKind?

Dr. Kenny: I think in the medical community, we're so focused on that medical aspect, but as you mentioned, it's so universal the way dementia presents and the supports and services that are needed, but the client or the patient -- or whatever term you want to give to the person living with dementia -- they're really looking to their physician to guide them. So it's crucial for the physician to go beyond what they usually do and make sure those supports and services do happen. And with the time pressures on physicians, it's really hard to figure that out. 

So, I guess my advice would be to realize that people are going to need a multidimensional intervention -- a care plan that will probably be outside the medical community -- so invite some of people like CaringKind in to tell them what's happening so that they can figure out a referral system and really have a warm handoff to those places they trust. Maybe some places that they want to start looking at are your local Agency on Aging, and they're all over the country, so no matter where you trained or wherever you are, your local Area Agency on Aging will know what some of those services are. 

Another place that physicians can look at are the organizations that have support from the Administration on Community Living and those are really the innovative care planners for that area. It could be very helpful for them as well to ask those people in to share their knowledge, to share what they're doing. And if that seems too cumbersome, just reach out to others that are so crucial in making the lives of people living with dementia better. That may mean social workers, that may mean occupational therapists… people who help people adapt to living well for as long as they can, and then also maybe help them go through some of the adjustments they need to do as they may move from living well to dying from dementia.

Michael: Well, yes, because obviously this is progressive disease, so people's circumstances change and diagnoses change and all of that. What are some of the obstacles to maybe maintaining those connections through the process that a patient's going through, and how do you overcome those?

Dr. Kenny: I think if the physician really learns to communicate well with someone living with dementia. What I hear often from people living with dementia is the physician takes them out of the communication. Most likely that's due to that need for speed in the clinical setting, unfortunately, so they're just trying to cut to the chase, but the person living with dementia wants to stay involved throughout the course of their disease, and they are looking for the physician to tell them what the next thing that's coming is, and what the physician's advice is on what they might want to look at. The people living with dementia can handle the hard facts. I think a lot of times we as physicians want to garner hope, but sometimes hope is saying ‘yes, the next step is going to be that you're going to change in this way.’ They want the honest truth, and then you can give them hope in different ways other than you're going to live to 110, but let me help you find a way to maintain your dignity, to maintain whatever it is you want to maintain as you transition to these later stages.

Michael: And I would think a physician just letting patients and caregivers know that there are so many resources out there would be a source of hope in and of itself.

Dr. Kenny: I think that's absolutely true, and I'm not sure that all physicians always know that there's so many other resources out there. So, luckily by hearing something like this through Osmosis, they will start looking for those because they do feel like their hands are tied when they don't have that much to offer. It may not be within the medical model, but it doesn't mean that they don't have something to offer. They have a lot to offer by connecting people with these resources.

Michael: So Stephani, keying back to the innovation in your title, what are some new approaches or trends to supporting patients and, particularly, caregivers? I think people are good to acknowledge that the caregivers have such a burden and need a lot of support as well. So, what are you guys doing in that vein and how do you implement these new approaches and stay on top of all of it?

Stephani: Let me take the second part of the question first, how do we stay on top of it? This is a burgeoning field right now. Lots of things are happening finally, which is good news. And so how we stay abreast of things, is we have a vast network of relationships and connections across the country and really across the globe. Staying actively involved in those networks with those kind of leading collaborators, the leading researchers, the people who are really the organizations that are pushing forward new solutions, we are a key player in that arena. So, having significant relationships with colleagues who are trying to push forward work, that's how we stay ahead of it. 

I think as someone who's been involved in program development and innovation my entire career, what happens when something doesn't exist? You're always looking at analogous fields, right? You're looking at what's happening over here and what pieces can I pull from over there and apply them to the work that I'm doing. In the realm of dementia, there's really a combination of things. There are elements that similar to cancer and so we can look at cancer models and think of like, okay, so how have families who are experiencing cancer been cared for? There's an element of mentorship, there's an element of ongoing support. Where cancer is different than something like dementia is that hopefully you get treated from cancer, you become a cancer survivor, you don't become a dementia survivor. And so there are differences there. 

We can look at things from the disability community. If you look at people who've had spinal cord injuries or a major stroke, or some other major significant event that's happened, it's caused their function to change, and now they're living in a new disability reality. So, we can look at those models and apply disability types of frameworks to the work that we're doing. And then there's some things like an AA model where you are really leveraging people who are living with it, or even people with spinal cord injuries, people who are living with this new reality, then shaping, helping to be a peer and a mentor to those who are going through it. 

Those kind of approaches are ones that I would say are definitely influencing the field forward now, particularly peer-to-peer types of programs that actually elevate the person with the lived experience. Lived experience is now kind of a common terminology in the field. It’s patient-centeredness on steroids. Patient-centered outcomes research is a wonderful, wonderful place where we are right now. Those types of programs are the ones that we're particularly interested in. 

One of the things that we're really excited about for our family members -- spouses, daughters, people who we call caregivers -- is called Partnering Together. It’s really about adapting to this new reality. It's a psychoeducational program. It's ten sessions once a week for ten weeks, and there's a combination of ‘let's actually adjust to what's happening here.’ So there's underpinnings of grief work, loss work, there are underpinnings of now how are we going to adapt? There's narrative story telling…your story is a piece of it. So there's kind of a whole narrative counseling component that's added to it as well as concrete information about what is happening, what is the knowledge, the new knowledge of these diseases that's actually impacting my person? 

That program has been wonderful because it's conducted in kind of a support group style, and so people are learning from one another, and that opens up a different level of experience. It's a facilitated group, but it's not top down didactic in the same way. And so that model we're really excited about, and there's a compliment to that for the person living with dementia. So, we kind of have these two routes of onboarding into what really ends up being a very tight knit, supportive group situation.

 

Then people kind of graduate from that ten sessions into a monthly maintenance, and people who may have been hesitant about wanting to be a part of a support group are now totally in. One of the gentlemen who's been a part of this -- he's actually doing a training for healthcare providers -- says he didn't know how much he needed to be with other people who are going through the same thing as him, but now he would totally recommend it.  It's a game changer for people. We just can't emphasize that enough. If there was one recommendation we could make that’s really going to impact, it’s find a friend. It's like, you need somebody who's in the same universe that you're living now.

Michael: So Dr. Kenny, Stephani used the term burgeoning. There's a lot going on in the field of Alzheimer's and dementia right now, and I want to turn to you to find out what's happening from a clinical standpoint and a research standpoint. There’s lots of headlines about drugs being approved, maybe working, not working…what's, in your mind, important for our audience to know about?

Dr. Kenny: Yeah, there is a lot happening. We were talking about it earlier. We used to think of dementia as kind of this one big umbrella of probably hundreds of diseases. And I think we're at this point where, if those were necklaces in a jewelry box, we're starting to tease them out as ‘this is one disease, this is another.’ There's still a big clump necklaces, but we're starting to separate them a bit. There's research on some genetics for specific diseases, and then that's what you have and your game plan would be, what do I do with helping my family? And then what kind of support would I need? 

New imaging is helping us say maybe some of the studies haven't worked before because we had this group of people in these studies where some probably didn't even have cognitive loss. We now know from the advances in imaging, the medications are starting to have some impact to slow the progression of the disease down so that certain types of dementia will move from being these slowly progressive, but very progressive, terminal illnesses to much more of a chronic model where you'll live with your disease for much, much longer and live well. As Stephani was saying, it’s that cancer model where you can live really well with your disease until it may shift to a time where you die from it, but that you're going to live very well for a much longer period of time. 

So, hopefully those changes will start to happen and people with the lived experience will start saying, ‘I am an Alzheimer's survivor.’ If we can tease these out and figure out vaccinations for some diseases and not others, people will start saying, ‘I'm proud to live with dementia and look what I can still contribute.’ 

We now have cerebrospinal fluidwecan tap into and pretty much say, yes, I have Alzheimer's, or I don't, or I likely don't. I think once people have that diagnosis and they feel like they won't live in a stigmatized place, but I have a medication that may slow things down, this could definitely change the framework of how we've been looking at it. Historically, most people are diagnosed mid-to-late stages and the media or some organizations have been using the end stages as fundraising or for sensationalization. I think we're going to shift away from that. We're going to have these lived voices, these lived experiences saying, ‘no, this is what Alzheimer's looks like.’ I mean, we're starting to see those advertisements now, and it looks like all of us sitting here. It can be people anywhere from probably their twenties to hundreds. It's not just this one picture that we've kind of seen in the media. So the changes in the imaging, the changes in the markers -- we probably soon will have a blood marker so people will have an idea if this is something . 

There’s also the lifestyle changes. We know that as much as the medications, as much as the cognitive stimulation therapy, lifestyle changes could potentially delay onset. If somebody wants to adopt a different lifestyle knowing that they're at risk for cognitive loss, they may be able to waylay that for many, many years. So again, we're teasing out these necklaces and we're starting to see one and two necklaces coming out, and the clump is becoming smaller and smaller. The geneticists are doing amazing work and the imagers are doing amazing work, and the drug developers are doing amazing work.  I think soon we won't be saying ‘you have dementia.’ We will be saying ‘you have aphasic variant of frontotemporal dementia without behavioral issues’ and that will mean things to people versus ‘you have dementia.’

Michael:

You have dementia, yeah. This is for both of you really…I'm just curious what is driving so much activity, not only in the clinical and research sides, but also I think public awareness and the growth of groups like yours. It’s multifactorial, I'm sure, but Stephani, can you put your finger on what's been changing over the last five years or so to make this such an active time?

Stephani: Well, I'd like to think that 40 years of effort is actually…

Michael: Aside from CaringKind…

Stephani: …making a dent. There've been a number of people at this for a long time and I can't even count myself amongst them. I mean, Anne's been involved in this work for longer than I have. I'm young in this field. If you're in the fifteen-to-twenty year range of being involved in this field, you're a youngster. There are people who have been fighting this battle and looking for solutions and pressing forward for solutions for a really long time. So I have to give honor and credit to those folks. 

I do think that part of, at least on the care and support side, what's escalating the change is that there have been twenty years of looking at different types of family caregiver interventions that have been effective and have demonstrated outcomes. I think the challenge has been when you're doing research, why hasn't cognitive stimulation therapy been adopted? It actually came into being because people were basically reacting against the fact that there's all this money that's thrown for pharmacological research and not money that's directed towards non-pharmacological research. So they advocated and finally got money for that and did a randomized control trial. So, the methods by which we measure impact and success and efficacy, those methods have I think finally been refined and adopted and implemented and then executed upon for twenty years. 

So now, we're to the point where we have six very different care management models that have been piloted, implemented randomized control trial, multiple settings that have demonstrated if you do these things, these non-pharmacological interventions, it will definitely stave off hospitalization, long-term institutionalization, premature institutionalization, Medicare, Medicaid expenses. And so I think there's enough work now that's established a body of evidence that cannot be ignored. It cannot be ignored, finally. So that's, I think definitely, driving some of the change, which we're actually now seeing with the Center for Medicare and Medicaid Services launching this pilot initiative through their innovation arm to test a payment mechanism for a care model, which is brand new territory.

But I think we also can't underestimate that there have been people paving the way. People living with dementia for twenty years who have been standing up -- and more and more and more of them are standing up -- to say, you have to do something differently for us. We are not all in the end stages and we actually need a different level of help and support now. 

I mean, if you look historically at any other massive movement change -- you could look at the Me Too movement, you can look at AIDS, you can look at civil rights movement -- why has change happened? These human justice issues have really gotten traction when the people that were oppressed began to be empowered to rise up. And that has happened. You can't ignore it in the same way. So, I that's driving change.

Michael: So Eleonora, I mentioned the “Forget-me-not” gala in the intro. Why don't you fill us in on what that's all about?

Eleonora: Yeah, so we're really excited this year about weaving in the work that we are going to be diving into in the next couple of years through our strategic plan. So, our theme is “Connect to Living.” So, we've got connect to living and culture and music, connect to people, connect to AI with Alzheimer's and connect to science and services. We are also excited about our honorees. Also, there will actually be twelve robots in attendance… 

Michael: Oh my goodness. 

Eleonora: …that are going to be sort of interacting with the guests. Some will bring you your drinks, some you'll be able to take a donation and some will actually give you some information about CaringKind. So, if you don't have a date, don't worry. You'll have a robot friend.

Michael: Do they dance too?

Eleonora: They dance. So, I actually was an executive in senior living for a long time. I was sort of known as ‘the robot lady’ during COVID.  I went in to live in a COVID building up at Cape Cod for almost two months to assist the executives there, the senior living organizations that had dementia units. We brought these different robots to work with the dementia units and individuals were connecting with their family members through Zoom easily through the use of robotics. They would also deliver packages. They really were very helpful during COVID.

So, at CaringKind, we are now going to be working with robotics here. You'll see them kind of roaming around the office, and we're starting to work with social workers in trying to make them more tech friendly. Obviously we know that technology has assisted with a lot of telehealth appointments and so we're looking to do some of those appointments here at CaringKind through the use of robotics. 

They’re also helpful for increasing socialization for dementia which is so important because we know depression and Alzheimer's go hand in hand. So, it’s about being able to utilize technology to bring joy, culture, and things that people really love back to their life.

Michael: Well, that's wonderful. How do people find out more about the gala?

Eleonora: You just go onto our website, cknyc.org. That would be wonderful. And you can just click on the gala page and get your tickets. We're now actively selling tickets and tables. We’re at Cipriani 42nd Street, which is a great location in Midtown. It’s easy to get to on the train and should be a lot of fun -- dancing, food…we’re activating all the senses.

Michael: Well, I'm sure it's going to be a terrific night. So, Dr. Anne Kenney, I think we've established at this point that it's a pretty exciting time to be entering the field. I'm wondering for the medical students and the early career professionals listening to this podcast today, what's your advice for some first steps they can take to get engaged in this space?

Dr. Kenny: I think if they're interested in aging and dementia care, it's to get out there and mingle with people. The reason I'm in geriatrics and in dementia care is the first thing my mentor from years ago had me do was go meet some people and it just changed my perspective so much. It opened my eyes. So, volunteer at something like CaringKind to facilitate some of these programs they're talking about, and you will meet incredible people and you may get hooked, like me. I you're more interested in something like pediatrics, you start thinking intergenerationally. There's so much evidence on programs that when you include young children and older adults that both benefit tremendously. So, just use some of your creativity that way. 

One thing that happens when you're in medical school is you often put down some of your humanities. It's so daunting to be in medical school, but using some of your humanities as a volunteer can open you up. Music and arts have been so powerful in assisting people living with dementia to engage in meaningful ways, in important ways. To open yourself back up to the part of you that made you want to go into medicine in the first place, part of that humanities of you, I think is a good idea and you can do that as well.

If they are interested in research, I think what I would add to what Stephani was saying is we're finally at this place where some of the research has finally coming to some fruition because the NIA was created back in the seventies and 50% of the money they got had to go to cognitive change research.  I think that attention, much like the space program, things happen when you put some focused attention. But it takes time and research is a lot about mistakes. And so I think we're finally at this place where we've made enough mistakes and we're starting to see how multidisciplinary things are. So, if they want to get involved in some research, it's just a fascinating area in so many ways. But mostly meeting with the people would change their lives in a positive way.

Michael: Well, it's a lot of food for thought. Some great suggestions to act on there. So Stephani, you mentioned a minute ago a new program from the Center for Medicare and Medicaid services called Guide, G-U-I-D-E, which as I understand it is designed to help dementia patients and caregivers navigate the really complex healthcare and social support systems. What else should our audience know about that?

Stephani: Sure. So as I was saying, there have been these comprehensive care models that have been studied that are basically designed to determine if some level of ongoing care and support is provided -- check-ins on a regular basis with families, getting them connected to supports and resources, providing some education support around that -- will that ultimately decrease hospitalizations, premature institutionalization and those big financial expenditures that Medicare and Medicaid ultimately end up paying for?’ Thankfully there's been enough work that the evidence has been established that yes, there are several ways that we can do this. 

And so finally, through some lobbying efforts, we have gotten to the point where CMS is now piloting an eight year project called the Guide Model. It effectively connects a person living with dementia and their family care partner to an interdisciplinary team comprised of whoever their clinical specialist is and then a care navigator. Then depending on the complexity -- where the person is and their stage and the complexity of their symptoms -- they are staged, and then the payment is on a per patient per month reimbursement based on the different acuity levels. 

This program is designed to test a payment mechanism because there hasn't been one for this type of program. If we fund regular consistent navigation and connectivity to your care team, will that ultimately save money and provide a different level of better quality of life and quality of care for families? So, that's being tested starting in July. They put the call out for anybody who wanted to be a part of that project could respond to the RFP and so those folks have been selected and notified. 

There's a couple of ways that you can kind of put it together. There are nine core elements that every GUIDE participant has to deliver as a part of their kind of wraparound care for the family. How they actually deliver that is -- there'll be some variation on the theme -- but the design has to be an interdisciplinary team and hopefully it will be a combination of the medical community and community-based providers working together. CMS was very clear that that's the intention of this, to really provide kind of a comprehensive wraparound team that's not just rooted in the medical community. And so we'll see.

CaringKind is involved with three different providers who are going to be a part of this project. We're all trying to figure out what it looks like and how we share the reimbursement, which of course we all know is not enough, but we have to push back and say, ‘here's what we're doing and here's how much it actually costs and here's how much you're giving us.’ And so that game begins, but at least it's a start.  As Anne was saying before, it's really recognizing that this is more of a chronic disease type of a model that needs ongoing support, similar other chronic diseases. It's a wonderful, exciting time. We've been pushing for some type of payment that gets into that area prevention and so we're looking forward to seeing where the successes are and what the lessons are that we'll all learn through it. 

I's nice because CMS seems to have set up a precedent for really creating a network so that people are sharing their learnings and accessing the resources from everybody who's participating in order to kind of move the needle in a successful way through this project. So, hopefully in eight years we'll have it all figured out and you will be able to produce a different level of lived quality for people who are impacted.

Michael: Well, we'll definitely have to keep our eye on that. As we wrap up today, I want all three of you to weigh in from where you sit and just give me your take on where you think Alzheimer's and dementia as a field is going to evolve in the next five or ten years. Eleonora, what about you?

Eleonora:  I think we've already seen it in just the last couple of years. Again, I've been doing this over 2twenty-five years and the term caregiver now seems to be in every article in the newspaper when you barely saw the word caregiver in the newspaper or the aging issues or aging well or any mention of memory impairment. I mean, you can't really open up a newspaper and not see an article about a potential treatment that's sort of in the pipeline and some lifestyle intervention that you should be taking for prevention for Alzheimer's disease. So I think for so many of us -- like Stephani and Dr. Kenny that have been doing this for so long -- it's been a lonely field. It's been a field where if you’re young, people are wondering why you ended up in the field of aging and memory loss.  I started right out of college and graduate school and people wondered why gerontology, why Alzheimer's and not something a lot more exciting? 

I think now is the time for this field. As I mentioned, earlier this week we had an event at which a young lady who's 32 years old spoke about not one parent with Alzheimer's, but two. And so where do I think this field is going? Unfortunately, it's going there and we need to prepare the country for that. We need to lessen the statistical number continuing to go up because we do know that there's some environmental factors and health factors that can make a difference, and we need to do a better job in the lower socioeconomics areas because there are some cultural differences that we can do more about. So, I'm looking forward to CaringKind being part of that army of organizations to help families with what's to come.

Michael: Dr. Anne Kenny, put your prognosticators hat on, or look in your crystal ball or whatever you want to do and tell us what you think is coming down the pike?

Dr. Kenny: I think I've spoken about it a bit. I think we're going to get better at diagnosing specific diseases and having care plans for them. I completely agree with Eleonora. The next challenge is changing some of these health disparity issues and getting the advocates from different communities to help us work with communities that have been ignored. I think that will be amazing. And as we have these better diagnoses, as they get more specific, I think that will ease some of that burden as well. 

I do see a bit of a dichotomy in that I think people who are living well with dementia will expand, that there will be less stigma and they will live well with it. But I'm also very interested in the end of life issues. I also think people living with dementia will have a much stronger voice in how they want to see the end of their life come and not have it be kind of on this medical model where we just kind of perpetuate. I think that will shift as well. 

So, I think both people living with dementia early will have a larger voice, have more clarity, and I think that clarity will then transform how people live at the end of their life with dementia.

Michael: Very interesting. Stephani, what would you add to that?

Stephani: I would say that I think the pace in which everything is happening is going to escalate. Certainly with technology solutions and with AI, the pace is quickening, which I think is good news, so I think that more solutions will come quicker. I also think that we're going to see more grassroots driven change. Again, we can look at analogous fields and see how does change actually happen? It doesn't happen from top down. It happens from bottom up. What kind of initiatives are being successful in this arena within the Hispanic communities, within the Black and Brown communities? There are grassroots initiatives where people who are members of those communities are actually driving the change. And so I think that will definitely happen. 

We're going to see more and more of people living with dementia driving priorities, their priorities being at the table. They will be an active presence.We're seeing just the glimmer of that now, and we're beginning to see the fruit of that.  I think you are going to see that escalate as well, where we've got people living with dementia who are not just participants in research, but who are partners in research, who are actually pushing policy change themselves. They're advocating on legislation that's designed to impact them. So, I think that that's the future. I'm pushing it into reality, I think, by naming these things, I think it's exciting. I mean, I'm hopeful that we're all going to be out of a job.

Michael: Well, that is an interesting note to end on! We'll talk about unemployment and what's available for support for all of you people who are going to be out of work. 

Stephani & Eleonora and Dr. Kenney: (laughs) 

Michael: Well, I'm afraid we'll have to make that the last word. I want to thank you all so much for being with us. It's really been fascinating. I've learned a lot. I'm sure our audience has, and we want to wish you all the best with the gala and with all the important work that you're doing. So, thanks for coming. 

Eleonora: Thank you so much for doing this interview.

Michael: I'm Michael Carrese. Thanks for checking out today's show. And as always, remember to do your part to raise the line and strengthen the healthcare system. We're all in this together.