Biggest Dementia News You’ve Not Heard of

[Dr. Mia]: 0:39

Welcome back to season three of Ask Dr. Mia podcast, conversations on aging well. And I'm very excited to bring you this first episode coming back to season three. I hope everyone has had a wonderful summer. It has been personally a roller coaster of emotions in terms of personal life and professionally, but today I wanna highlight something that a lot of people have not heard of. And I'm titling this episode as the biggest dementia news that has not been covered in media. I know in my previous episodes, we've talked a lot about Lecanomab and other monoclonal antibodies or medications targeted against amyloid protein, the protein that we think starts to cascade for Alzheimer's disease. But... I know many of you also know that dementia is not just Alzheimer's disease and that a lot of the different types of dementias share similar problems in terms of diagnosis, treatment, as well as support for the person living with dementia and their caregivers. So the big news is that on July 31st, CMS or Center for Medicare and Medicaid Services, the organization in the government that really sets the policies and payments for most older adults, 65 and up, as well as some older adults who also have Medicaid, so the insurance for the poor. And CMS has an additional center that was started during the Affordable Care Act. called CMMI or Center for Medicare and Medicaid Innovations. Over the past decade, CMMI has really started changing the way that healthcare is paid for. And we are in a unique situation where we're transitioning from what's called fee-for-service Medicare to value-based Medicare, meaning that instead of being paid for every procedure or every patient that is seeing Medicare and of course Medicaid are starting to bundle the payments and give a what's called a capitated payment, a bulk of money for a certain number of patients that institutions or health systems or doctors are taking care of and based on pre-specified quality measures, the payments could be adjusted based on how well the patient is doing. that's probably going to be a separate discussion. But today we're going to talk specifically about what's called comprehensive dementia care. So for those who are caregivers or who know of people in the caregiving journey, a lot of times the frustrations and the difficulties are not so much in the medications for treatment or the lack of medications for treatment, but it's really about how to navigate the healthcare system. and how to get the right services for the people who need them. And oftentimes, unfortunately, what happens is that a doctor may give a diagnosis and then say, I'll see you back in a year because there's not much that can be done, not to mention all the people who have not yet been diagnosed, even if they have concerns. So comprehensive dementia care. kind of takes inspiration from cancer care in the sense that it is supposed to address the concerns of both the person with dementia and their caregivers. Just like in any other serious illness, there's oftentimes more than one person involved. And particularly when it comes to cognitive diagnoses, when the person who has cognitive impairment really need another person to help with everything ranging from, you know, reminders to take medications or could be as extensive as total care. So why hasn't comprehensive dementia care been a reality already when cancer care, there are centers or comprehensive cancer centers where most people now probably get an evaluation and treatment. And I think that probably is... multifactorial, but one of the biggest reasons is that under the fee for service payment model, most institutions or healthcare systems are incentivized to see as many patients as possible. And so for each person that is seeing the amount of time gets shorter and shorter. So it's not a provider, which is really not enough time to go into depth about anything complicated. And the payment model for whether it's dementia care or cancer, cancer care really guide how much coordination of services there are. And a lot of dementia care is about addressing the social, the psychosocial needs. of the family, not just about the medical needs. There have been models for comprehensive dementia care, actually for decades. Some of the first evidence-based dementia care models that are coordinated, or what was called the collaborative care model, where a specially trained dementia specialist work with primary care, that's the collaborative model, based on... the collaborative care model used in mental health. So having a dedicated team to address mental health illnesses in coordination and integrated and coordinated with primary care is kind of how one particular model of comprehensive dementia care came into place. I'm going to share in the episode links, some additional reading material for those who are interested. and looking at the differences between different dementia care models. But that is to say, a number of them were developed over 10 years ago. But one of the limitations has been that so far it has not been financially viable for a lot of health systems to adopt it because so much of payment for health care has been based on volume, not based on quality. And We're still in that transition period. So the big news that happened, that was announced at the end of July, is that Medicare is going to, or Center for Medicare and Medicaid Innovation, CMMI, is actually going to start a demonstration project or an alternative payment model, a different way of paying for dementia care, that is called GUIDE. and the abbreviation stands for guiding an improved dementia experience model because this is with the goal of improving the quality of life for people living with the dementia, reducing the burden and strain on specifically unpaid caregivers or most caregivers for people living with dementia, and prevent or delay long-term nursing home use, which as many people tell me being in a nursing home is one of the biggest fears that they have and being a burden to their families. So as I said earlier, there are many different types of comprehensive dementia care, but there are some core features that are important. So as I already said, it has to address not only the person with dementia, but also their caregiver. So the caregiver needs to be supported and educated on a disease process, and that there needs to be a coordination of care, meaning, you know, you really shouldn't be the caregiver who has to call five or six different places to get all the things that are needed. Ideally, there is someone who is navigating the healthcare system to make it as easier as possible for the caregiver. This does not mean that Medicare is going to start paying for someone to take care of the person with dementia completely. Unfortunately, that's not the case, but it's really to make the health care system easier to navigate and to have a more integrated collaboration between community organizations or senior organizations in the community that may offer activities or respite care. as well as the healthcare system. So in the health affairs article that I will share in the show notes, it talks about eight core features. One is caregiver support. One is continuous monitoring and assessment. So it's very common for all of the different dementia care models to really do an initial assessment because dementia is such a heterogeneous disease. Everyone may have a slightly different feature and a different stage. So, and there are different things that are needed and earlier in the disease course that are completely different from what's needed later in the disease course. There needs to be ongoing care plans to address the changing nature of the disease and changes in caregiving or changes in one's social and financial situation. There needs to be psychosocial interventions. Most of dementia care and behaviors can be addressed and preferably could be addressed without using medications, but a lot of unpaid caregivers have never been trained or told about how to do so. For people who could self-manage their care, there's a component of self-management. There's definitely a component of medication management. So not just about memory medications, but all the other medications that someone is taking. And that's a reason why people with dementia are more likely to go to the hospital and in the emergency room, because they might be lacking the ability to taking all of their medications accurately. There needs to be treatment of related conditions. So just like we're not only going to treat memory, but we also need to make sure that one's blood pressure and blood sugar are well controlled. So that kind of gets a sense of the holistic nature of comprehensive dementia care, and it's not just disease specific, meaning that because dementia and memory loss affects all self-management of chronic conditions, this really helps address. different settings of care, as well as different disease processes. So Medicare will pay per member per month for institutions, healthcare institutions specifically, that can sign up for this model. And for those who are already doing comprehensive dementia care, like we are at our institution, we would be potentially be in the experience pathway. There are some... institutions that are newly starting this process and they would be at a later schedule. So based on quality metrics and payment models, beneficiaries, so this is only applicable for people who have traditional Medicare, not any sort of Medicare Advantage plan. So a lot of health insurances are what's called Medicare Advantage plans. meaning that Medicare has already bundled the payment to an intermediary. So, for example, UnitedHealthcare or Humana, where they take a bulk amount of money from Medicare and then they manage and provide additional services, sometimes for transportations or delivery of meals after surgery or hospitalization. This is really for people who already have a diagnosis of dementia. We're not talking about prevention of dementia in this particular case, just like we're really talking about the treatment of people who have symptoms and have impairments in their daily function. And there is a special consideration for health equity, so making sure that these models of care are available. in places that traditionally have not seen, have a shortage of memory specialists and screening for health related social needs. So you know, whether someone have housing insecurity or that they don't have enough money to pay for food and have to balance the need to pay for medications versus food. Those are things that under this guide. program one will need to screen for. What's also very exciting is that Medicare has really never quite paid for what's called respite services. So again, this is not to say pay someone to take care of someone with dementia full time, but for unpaid caregivers, sometimes they don't even have a way of getting a break. You know, there's no chance to. take a week long vacation at the beach because there's no one else who could see, who could take care of the person with dementia. Respite care will pay participants of the model, of the guide model a capitated amount of money per year. So that actually converts to about $2,500 that can be used in a number of different ways. either at a facility that can provide 24-hour care or at an adult day center, so during the day, or some other way of getting in-home services. So this is certainly not enough to provide full-time care for someone with dementia at home for the whole year, but can really be helpful for people who don't have the resources to pay for someone to take a break. And this will also include 24-7 access to a support line. And this support line was really a key feature of the model that was developed by UCLA, where patients and their families need to have a readily accessible line to call for. information and help, especially after hours, with the goal of reducing the use of emergency room and hospitals. Because sometimes going to the hospital, going to the emergency room, is not only a traumatic experience for people with dementia, but also it's not necessarily something that they can bounce back from after they go to the hospital. So, Guide model will really address five key ways of defining a standardized approach, providing alternative payment model. So this will be an additional income to the health care system to pay for the personnel and the time to coordinate these services, address unpaid caregiver needs, provide respite services, as well as screening for health-related social needs. And this is a model that really encourages the healthcare system to partner with community-based organizations. So, for example, the area agency on aging that is required in every county to have collaboration between the healthcare system and local nonprofits and other senior organizations. that might be providing say meals on wheels or transportation for seniors to get to appointments or any other type of volunteer or grant-based programs to help support people living in their home for as long as possible. And one of the reasons why I bring this up now is because without the payment model, there's really no incentive on the part of healthcare systems to implement this. And it is such a big deal because with an promise of additional money, suddenly there's a lot of interest on healthcare systems part to actually coordinate care and provide comprehensive care for people with dementia. It is not surprising, however, that it has taken so long for these care models to get into the real world setting. One particular study that I will talk about at a later episode is what's called the dementia care study or the D-care study, which is the largest pragmatic clinical trial comparing two different models of comprehensive dementia care. that is currently still going on and just actually finished our site, awake for us has been one of the sites. And this is a study that recruited over 2,100 dyads, so over 4,200 participants either with living with dementia or their unpaid caregivers. and randomized to see whether a community-based dementia care model is the same or different or better than a health system-based dementia care model. So more results for that study and more information on that coming up in a future episode. What will this mean for patients, caregivers, health care systems? I think this is one of the biggest. changes that could really make a huge impact in the lives of people who have dementia now and their families because this will hopefully mean that people's health care, not just dementia care, but all of their health related needs are more coordinated, that there's a place for people to go for help instead of trying to figure out how to get everything done on their own. Oftentimes our healthcare system is extremely difficult to navigate, even for folks who work within the healthcare system. This will hopefully mean that caregivers can have the support that they need to be able to keep their loved ones with dementia at home longer, with a better quality of life, and relieve the burden of caregiving a little bit so that... people are not unnecessarily going into a long-term nursing home, which oftentimes it really is an option of last resort. And this will hopefully encourage community-based organizations to work more closely with health care systems because there is now an additional financial incentive for both the health care system and for the community organization. to get additional funding from Medicare and Medicaid. And there has been calculations on a part of organizations that do economic evaluations or programs. And this program could potentially save a lot of money for not just Medicare in terms of reduced hospitalizations and emergency visits, but also for Medicaid. which is the insurance plan that pays for most of long-term care services in the United States. So the longer that as a country, we can keep people where they are the most happy in their own homes. Not only is that better for the person with dementia, but it's actually also lower cost for the system overall because institutional care is more expensive and oftentimes less personable. So I'm really excited to tell you all about this work because it is my passion to work in this space to really create the system that works better for people with dementia and their caregivers. This may not be the newest medication on the market, but it really has the potential to dramatically improve the lives of people who are affected by this disease. And I hope that in the next couple of years, we're going to see more and more healthcare systems take advantage of this program and implement systems that really benefit the people who have the disease. Because at the end of the day, it's not so much the forgetting that is... challenging, but it's really all the other changes and mood and personality and safety and independence and cost that makes this disease so extremely stressful and burdensome. And because the disease is so complicated, there's really not going to be one single magic bullet that gets rid of it, but this is one important pathway forward that can really help make the lives of people who are affected by dementia better. And thank you for listening and hope to see you next time.