Although timely diagnosis can significantly improve a patient’s future, dementia is underdiagnosed and often detected late. To help PCPs make thorough and efficient evaluations, two experts from the UCSF Memory and Aging Center describe their five-step workup process for possible cognitive decline, including tests for finding reversible causes. Providing important updates on a fast-changing field, they offer clinical tools and patient resources as well as a look at better disease-modifying therapies.
Right. Well, so excited to be here today. Thank you everyone for taking the time to learn a little bit about um dementia assessment in primary care. So I'll get us started. Um, so in this talk, we'll give you an overview of cognitive function. We're gonna really focus on two diagnoses that we think are best made in the primary care setting, and those are mild cognitive impairment and dementia. And we'll talk about what is the role of primary care in diagnosis. And to do this, we'll present what we call the five-step brain health workup. And we'll, uh, Lisa's also gonna present some smart phrases that are available to those of you working, uh, within the UCSF system to support care. Um, we'll talk about specialty referral to the memory and Aging Center, and we'll talk a bit about some future directions and innovations. All right. So, just to get us started, um, dementia is underdiagnosed, and when it is diagnosed, it's usually diagnosed very late. And the actually the um race and ethnic minorities experienced, experienced the most delays in diagnosis of dementia. And this is a major gap in care for patients and families. With timely diagnosis, you can improve medical care, including retreat, treat reversible causes of cognitive impairment. Um, optimize medications. You could connect families to supportive care. You can identify candidates for clinical trials and disease modifying therapies that are actually one already approved now, but really more uh on the near horizon. Um, and also, I think really engage patients in planning for their, their care when they're still at a stage of disease when they are able to do that. Um, so I think that's, that's really ethical. Um, families want earlier diagnosis and I, I think it needs to start in, in primary care and really require, requires a partnership between primary care and dementia specialists. And you know, Lisa and I really invite all of you to think about how we can better partner together to help address this gap. Primary care providers are often in the best position to spot the early signs of cognitive decline. Um, so here's a quote from a caregiver of a person with Alzheimer's. We've been going to our primary care provider a long time. We feel very comfortable with her in the practice in general. She's always concerned about both of us. It was natural that she was the first person we talked to about his memory problems. And indeed, primary care providers are usually the first provider to hear about these problems. All right. So here's an algorithm um of our evaluation and assessment when a patient comes into our clinic with concerns of memory problems or cognitive changes. So, first, we assess if there are, if there are indeed concerns about cognition. This could be memory, executive functioning, like planning and problem solving. This could be language, visualspatial, maybe they're getting lost. Um, and then we look for evidence of progression or decline of these symptoms, um, and who has noticed these symptoms. So, for example, if it's just the patient, um, or if it's also family members, then we assess if there has been objective evidence of functional decline, um, meaning that they now need more help with, with certain tasks that they were able to do before. So, if we look at this diagram, First, is there objective evidence of decline, meaning through memory or thinking testing or perhaps an outside observer. If not, and it's only the patient that's noticing these changes, we take note and call it subjective cognitive impairment. If there is objective evidence of decline, we then look for loss of functional independence. Um, so if the patient is now needing help with tasks that they used to be able to do independently, we call this dementia. And if they're still functionally independent, we call this mild cognitive impairment. OK. So, mild cognitive impairment or minor neurocognitive disorder is defined by concern about cognitive decline, which can come from the patient or perhaps a family member or friend. Um, there is objective evidence of impairment and decline, and this can come from sort of a clinical judgment, you know, you're noticing this, um, and it's often informed by cognitive testing, either sort of a full neuropsych assessment or a test such as the MOCA or the MMSE. And patients with mild cognitive impairment still retain functional independence. And of note, we wouldn't consider someone to have MCI if they have loss of function due to strictly physical limitations. Um, and we further subtype the type of cognitive impairment. So, for example, there's amnestic mild cognitive impairment, which is predominantly a memory change, and then we have non-memory domains, which could be language, executive functioning. And then there can be single or multiple domains that are affected. Um, so perhaps it's not just memory, it's also visual, spatial, and executive functioning. And we want to keep track of MCI because it is very common. It affects 15 to 20% of people over 65 years of age, and there is a high risk of progression um to dementia in a patient that has an MCI diagnosis, and this is about 10% per year. However, not all progressive dementia, and there's a very small amount that might actually revert to a normal profile, um, if they're treated for perhaps the causes that of their MCI. And mild cognitive impairment has many different potential causes. So the majority of cases are caused by neurodegenerative diseases like Alzheimer's or frontotemporal disease. Vascular disease is also a very common cause of cause of mild cognitive impairment. And then there can be other medical causes like a B12 deficiency, um, infections, electrolyte imbalances, and So, the risk factors for progression to dementia include an older age, If the impairment is amnestic and or multi-domain, If the cognitive changes are accompanied by neuropsychiatric symptoms like apathy or depression, If there's also a high burden of vascular disease risk factors like diabetes, high cholesterol, hypertension, um, if the imaging shows temporal volume loss, um, so more, more brain atrophy, then that's normal for age, and or white matter hyperintensities, which would indicate vascular disease. And then lastly, and perhaps very interestingly, there's also positive AD biomarkers, um, which also indicate a high risk of progression, and this can be through the lumbar puncture collection of cerebrospinal fluid, um, or through amyloid PET imaging. And so, please, you know, refer to the memory and Aging Center for CSF testing and also we have research projects that um collect PET imaging as well. OK. And then dementia, or major neurocognitive disorder. Is defined by concern about cognitive or behavioral decline, with objective evidence of this decline, and a reduction of functional independence, such as difficulty with instrumental and or basic activities of daily living. So, instrumental activities of daily living, I'm sure we all know this, but they include higher level tasks such as food preparation, shopping for groceries, managing finances, using transportation, um, and the basic ADLs are, you know, bathing, transferring, toileting. And of note, um, a person with isolated delirium is not considered to have dementia, so we're talking about changes over time. Um, and we can stage the level of dementia based on functional decline, so mild, moderate, severe. And there are many different clinical syndromes of dementia. So, such as Alzheimer's type, which maybe is the more typical um memory predominant and non-typical Alzheimer's. There's Lewy body dementia, which would include some neuropsychiatric changes like delusions, hallucinations, maybe some high anxiety. There's primary progressive aphasia, which is predominantly a language problem. Especially initially for the first few years, um, and then frontotemporal dementia, which is, um, evidenced by, you know, clear behavioral changes. And we just wanted to come back to our algorithm. Um, so, when a person comes in with memory or cognitive changes, we assess if there is objective evidence of decline and evidence of progression. And then we look for a loss of functional independence, and a loss of functional independence indicates dementia, while preserved functional independence indicates MCI. Thanks, Lisa. So, um, you know, so MCI and dementia, as Lisa explained, really get at how bad the cognitive impairment is, right? But it doesn't tell you anything about what's causing it. Uh, there are actually reversible causes of cognitive impairment, um, that, you know, for example, might include a vitamin deficiency, a thyroid imbalance, sleep disturbance, mood changes. These are all things that are commonly assessed in primary care. Um, but, um, you know, most cognitive decline in later life is caused by neurodegenerative pathologies. The most common is Alzheimer's followed by vascular, Lewy body and frontotemporal. And actually, the most common is mixed. So most, um, older adults actually have a combination of pathologies. To get at what the causes of the dementia, that requires typically a specialist evaluation. This really goes beyond, I think, what we expect in the primary care setting. So we do, I think that primary care is really well suited to diagnose MCI or dementia. Um, and then to get at the cause of the dementia or the cognitive impairment, um, beyond those reversible causes I mentioned. That, that requires a specialist evaluation. Um, a bit a question in the field is, does everybody need a specialist evaluation? People have different opinions on that, um, and I, I think, uh, one way to think about it is you may be comfortable if it just seems like a very typical presentation, there aren't a lot of complications. Or challenges um beyond the normal, maybe you're able to handle it in-house, but if it seems like an atypical presentation, um, or if the family has a lot of extra challenges, uh, then you might, uh, do a referral in that case. But, a lot of it depends on sort of your level of comfort as well as the family's wishes. OK, so we're gonna be walking you through now the five-step brain health workup. And this you can find details at this website. So I hope many of you will write down this website at the bottom of the page. It's really designed for primary care. To guide you through doing that diagnosis of MCI and dementia. Step one, identify if there's a concern. So this brain health workup should be initiated when you have a concern that your patient has experienced cognitive decline. This can be based on your own observations, or because the patient has brought it up or endorsed uh a concern or a family member. And we do encourage you to regularly ask your patients about whether they may be experiencing any changes in their memory or thinking skills. So step 2 is to detect objective cognitive impairment. So when there is a concern, the first thing to do is to administer a standardized cognitive assessment. And I wonder if people could just quickly put in the Q&A, um, what do standardized cognitive assessment do you use in your practice? And I can't see the Q&A, but maybe Lisa will, will shout a few of them out to me, but please just throw it in there, or you can say, we don't use one. That's also acceptable. I just want to hear what's going on with standardized cognitive assessment in your clinic. We have a few MCAs so far. 2 MCAs, 3 MCAs, 3 MCAs. All right. Great. Still on mochas? The slums, we have a mini mental status, the Rudas sometimes. Mhm. And more slums. All right. Great. Well, um, so great to hear that everyone's using these, um, standardized cognitive assessments. I know they're challenging to integrate into primary care. My understanding is usually the physician does this themselves, um, uh, although I have heard of some practices where an MA or other clinical staff are trained to do the assessments. And then step 3 in this 5-step, uh, brain health workup is to evaluate for treatable causes. Um, so first, we want to rule out any possible reversible causes like a thyroid issue, an infection, um, or vitamin deficiency, rule out anemia, um, And we also sometimes, you know, we'll also get a syphilis or HIV test just to make sure that this was not missed as a potential cause. Um, and there might be other labs that are ordered based on various risk factors or just the presentation of the symptoms. Um, we review medications. So as we all know, polypharmacy is a big issue with our older patients, and we want to optimize our patients' medications. Um, so they're taking fewer with any potential cognitive effects such as anticholinergic medications like amitriptyline, amitriptyline, first-generation antihistamines, and oxybutynin. And we can also order neuroimaging, um, either non, non-contrast CT or an MRI to look for abnormalities in the brain, uh, including different atrophy patterns. And depending on the presentation of symptoms, for example, if you think that there could be some seizure activity, you could order an EEG, and then sometimes EMGs are also ordered. And then step 4 is assessing for function. So is this sort of an MCI versus a dementia? And as mentioned before, we need to determine if the patient is now having difficulty functioning independently. So we assess this by again talking about the IADLs and ADLs. And so the instrumental activities of daily living are listed here, household chores, medication management, Are they still able to manage their finances, pay their bills on time? Um, driving, are they getting lost or making poor decisions while they're driving? Um, communication, um, are they still able to use the cell phone? Um, any, you know, is there any concern about them being able to call 911 when it's appropriate? And then basic activities of daily living include transferring, dressing, feeding, bathing and grooming, toileting and continence. So if you're assessing a patient and you notice that they're really having trouble understanding their medications, or they keep forgetting to take their medications, which you then sort of see in different abnormal labs, um, it's possible that this could be a sign of functional decline. Um, and we continue to ask about IDLs and ADLs at follow-up visits just to kind of get an idea of, of the progression. Thanks, Lisa. So, um, disclosure is, is really the next step, right? So after you have identified that a patient has cognitive impairment, you've done your reversible causes workup, you've assessed function to figure out if it's MCI or dementia. The next step is to disclose this, um, to the person with cognitive impairment and ideally with a family member. But, and then do, and then, of course, take the next steps and follow-up care. But this piece here, I, I get the sense from my work is one of the biggest challenges in primary care. Um, as noted by this person living with early-stage Alzheimer's, it took nearly 4 years for us to get a diagnosis. The doctor told us it was Alzheimer's, that there was nothing he could do and to come back in a year. We were first devastated and then angry. I also have diabetes and I got medication, education, and care management for that. Now, I have a fatal brain disease and we got diagnosed in Adios. We have to do better. So, um, how do you disclose and provide follow-up care for diagnosis like MCI or dementia? So we think that primary care providers who have a long-standing relationship with that patient, they're really in a, a, a good place to do this diagnosis and disclosure. And we think disclosure is a process that it should involve the patient and the care partner and, and probably needs to happen over time. Um, and Um, if you, a specialist appointment like the memory and aging Center is usually needed for a differential or etiological diagnosis. For example, saying if it's Alzheimer's or Lewy body, especially an atypical or complicated presentations. So getting back to that 5-step brain health workup, we're gonna take you through that last step now. Step 5. Disclose MCI or dementia using pass guidelines. So first, you wanna prepare and set up the conversation. Um, assess what the patient and care partner already know, their hopes and worries. And you, so you wanna also get a sense of how much they wanna know. Now, most people, uh, in this situation, want to know if, what the doctor thinks in terms of their diagnosis. But sometimes a patient doesn't wanna know, and so we need to respect that too. So, um, trying to find out what they already know and how much they wanna know is important. Then, assume it's what the patient wants, you then share the diagnosis in clear language. Don't try to like hide it or pretend like it's not a big deal. Be open and honest about what you know. Um, you know, for example, if this is mild cognitive impairment or dementia. And then, of course, support. Support empathically, um, explore their response, check for understanding. So we recently finished a study that's um that's just still in progress that where we um tried to look to see what happened after this disclosure in primary care. Actually, others have done research on this as well, and patients usually don't understand the diagnosis after this primary care disclosure. So more, it, it probably more needs to be done, um, in, in most practices. So how do you share it? So here's some, some scripts that you can weave into what you say. Um, so let's say it's MCI. You could say, include, uh, in your, in your disclosure that you are diagnosed with what is called a minor neurocognitive disorder or mild cognitive impairment. This means three things that you or a loved one has noticed changes in aspects of your cognition or memory. There is objective evidence of a deficit in our evaluation, and you are mostly independent in your everyday functioning, like medications, finances, cooking, etc. So people with mild cognitive impairment may or may not progress to dementia. OK. And of course, this last sentence is what patients and families often want to know about. Am I going to progress? And you heard from Lisa about some of the risk factors uh for, for likely progression. So how do you share a dementia diagnosis? You could weave in that you are diagnosed with what is called a major neurocognitive disorder or dementia. This means that you or a loved one has noticed changes, there's objective evidence, and you are needing some support for your everyday functioning, like with medications, finances, cooking, etc. For most patients, dementia slowly gets worse over time. So I really support being open and honest about this prognosis piece. Uh, it helps patients and families plan for the future. OK, so just to review, um, OK, so just to review the five-step brain health workup before we move on, uh, step one, you identify a concern. Look for concerns. Ask your older patients if they have concerns about their memory or thinking changes. And when there is a concern, administer uh objective cognitive assessment. Like the ones that you all put in chat. And then evaluate for treatable causes, assess function, and this will help you determine if MCI or dementia is more appropriate. And then use your past guidelines to disclose the diagnosis and start a care plan. And if you, uh, write down this website, you'll always have this five-step plan. So we're gonna talk about um some sort of new directions in this field. So some of my work is with what we call the TACCAT Brain Health Assessment or TDCAT BHA. Uh, this is a tablet-based or iPad-based assessment. And this is actually the standard of care in some UCSF primary care practices now. So what they do is when the provider has a concern for cognitive impairment, The provider asks their medical assistant to do the assessment with the patient in a quiet place. It takes about 10 minutes. Then, after the assessment is done, and this replaces the MCCA, the MMC slums, etc. and it's much more accurate. Than those tests at early detection. So they do this 10-minute test. After the test is done, the results are instantly available in the electronic health record. And this is within UCSF because we've built the EMR integration. So it looks something like this, you can see on the screen, where the results in the form of a text-based report that describes how the patient did, is instantly integrated. So all the You know, so we, we can look to see how the patient performed, and we can do adjustments for age, sex, education, language spoken, etc. and uh instantly tell the PCP, you know, what's the likelihood that this patient has cognitive impairment. And what are the recommended next steps in care? Then, after the PCP reviews those results, and this is the hard part, um, the PCP then needs to evaluate for reversible causes, make sure to engage a care partner, disclose the findings to the patient and the care partner. Not just that they have a high likelihood of cognitive impairment on this test, but that they have MCI or dementia, trying to get it to that diagnosis of MCI or dementia, or normal with subjective concerns, um, cause sometimes the, the, the brain health assessment comes back. That the patient's actually doing pretty well cognitively, and so then you can reassure. Um, and then provide resources and referrals, and actually in a few moments, Lisa's gonna be, um, ending our presentation today with a lot of discussion of what are some of the good resources and referrals. So this is now, as I said, standard of care now at some UCSF primary care practices and it's certainly an option um if, if, uh, if you have a primary care practice that's ready to make a change like this. So, and I ask you to, uh, now, will your dementia-related practice change in the next few years? And I'm gonna say, even if you think the answer is no, it's yes, and by a lot. This field is changing faster. I've been in this field my whole life, and this field is moving at cheetah speed right now. So there is increasing availability of disease modifying therapies. And this is gonna mean demand for earlier detection of cognitive impairment in primary care. A huge increase in demand. Blood blase-based biomarkers for dementia will be increasingly used in primary care. So let's go through both of these a little bit. So disease modifying therapies. The first one was approved in by the FDA in June of 2021. I'm gonna guess most of you heard about it because there was a lot of controversy. Um, and I'm not gonna go into all of that, but basically, it's because there are questions about whether, considering the cost of the medication and the risk for side effects, versus the minimal benefit, if it was really worth it. And in fact, it is not currently offered at UCSF. It is offered in some places. So, but there are more therapies that are in the pipeline that look more promising. And uh just a couple weeks ago, we got this announcement that uh leconumab, which is another anti-amyloid antibody, slowed the rate of cognitive decline by 27% in an 18-month study. In fact, all of their endpoints, primary and secondary, were highly statistically significant. And we're gonna be finding out more details about that in the coming weeks. But all signs point to this medication making a speedy transition to being clinically available. And again, they're more in the pipeline. So we're entering a new era of Alzheimer's therapeutics. Blood-based biomarkers. This is another area of huge advancements in just the last few years. This, the field has been moving with tremendous speed since the groundbreaking discovery in 2017, that brain-derived Alzheimer's-related proteins can be measured in the blood. So previously, they were only measured via, you know, PET imaging, or CSF with lumbar puncture. These are invasive and expensive procedures that would never be deployed in the primary care setting. But blood-based monomarkers, this is probably gonna be entering some of your practices in the near future. In fact, some of these blood-based moners for Alzheimer's are commercially available already. And I wouldn't be surprised if some of the PCPs on this meeting have been asked by patients whether they could get one of these blood tests. It's going to be happening more and more. Although I don't think that these tests should be used in primary care yet. We need to understand better how underlying health conditions can affect results. The clinical performance of these markers in real-world diverse populations has not been Adequately established and more work is needed to figure out how best to inform patients about the results and what to disclose to them. A good example is what if they're cognitively normal and they get one of these blood tests? Do you tell them if they are Alzheimer's positive? So, Uh, well, we really don't know if they're going to get Alzheimer's in, you know, 2 years or 15 years or, or maybe never. So, um, there's a lot of unanswered questions here, but yet, I have to say these blood biomarkers were only first discovered in late 2017, and we have moved so far just in that short time. So, I think it's, it's a, it's really short time before you can expect that this will become part of your practice. So big changes are coming. How is this gonna affect your practice? So for these new therapies, early detection is going to be needed for patients who are likely to benefit. So miniog will not be enough, and I would argue that most of the tests that you guys put in the Q&A are really not ideal either because they're not optimized for the early detection of mild MCI. And this is when patients are gonna be most likely to benefit from these therapies. So we are going to see a transition towards more sensitive cognitive assessments, probably digital cognitive assessments, combined with blood-based biomarkers. So if you were to look into the future, 3 to 5 years, I'm gonna guess that that's what's gonna be happening in your practice. You can expect increasing demand from patients and their families for brain health evaluations. When they hear that there is a treatment for Alzheimer's, they're gonna want to be evaluated if they are concerned um that they have it. And to ensure health equity, we, we want primary care providers, of course, not just to respond to those requests, but we want, we hope for a standardized protocols for primary care providers to identify patients who could benefit. So this helps with health equity. So it's not just the patients who are more health literate, who are better supported, that are asking for the care, but that all patients who might need these therapies, um, are given equal access. OK. And, and, you know, while we're, you know, waiting for these bigger, you know, medications and, and such, we have some resources now that we currently um have available to patients. And so these, you know, we can offer disease-specific organizations um like the websites for Alzheimer's Association and the Lewy Body Disease Association, um, and these different sites have, you know, robust information about the disease, um, and resources for patients and caregivers. Uh, when it comes to legal planning and long-term care, we often refer to, um, CAA or the California Advocates for nursing home reform, and also the Family Caregiver Alliance. Um, a large, as, as we know, a large part of caring for someone with dementia is, um, how we communicate. And so a lot of these websites like the Alzheimer's Association and the Family Caregiver Alliance have a lot of information about strategies of how to better communicate with, with someone who's experiencing cognitive changes and um our UCSF Memory and Aging Center website also has a lot of information on how to better communicate with your loved one. Um, and also deal with sort of difficult behaviors that might come up, um, that the patients and families experience. And, you know, for driving resources, which we know is, is a big concern when it comes with dementia, comes to dementia and cognitive impairment. Um, you know, we're all, uh, as, you know, we're all mandated, um, reporters. If we do give a diagnosis of dementia, we do have to report that in the state of California. And so it's important to have resources um available to our patients explaining all of that, um, and how to work with the DMV. So we also often share information for the DMV um budsman as well. And then it's very important for our patients to stay socially engaged and active and not to mention it's, you know, helpful for the family. So we also refer to the Alzheimer's Association for different activities there and then also try to use day programs as much as possible, like the Institute on Aging in San Francisco and Hong Fuk in Oakland. So there are a lot of these day programs that we should, we should try to utilize. And there are also, thankfully, a lot of educational resources online. And again, we often refer to the Alzheimer's Association um because they also have lots of different languages, which is very crucial for our communities. And then, of course, there's so much, um, you know, burden or, or stress put on caregivers and so we want to um make sure that we're taking care of them as well. So a lot of our discussions and um resources are actually for the caregiver. So there's a lot of support groups that um also have some for the patient. Um, we either Refer to folks at the Family Caregegiver Alliance or the Alzheimer's Association. The, um, we also host a few support groups and you can find those at our website. Um, and also the Family Caregiver Alliance will do a follow-up call for patients and their families and sort of assess how the caregiving is going and offer sort of more, um, individualized resources as well as they can sometimes give respite grants to people. So that's a huge resource. OK. And then for smart phrases. So, there are, we have a whole table of these that we're going to send out after the presentation, um, and these would typically be used maybe in the after-visit summary. So this is information to provide directly to the patient. Um, and so I just want to provide some examples. So, for example, this .mcAD is specific resources for Alzheimer's disease. So, you know, it has some diff different information about the disease and then, um, support groups that are available. Um, And then if you go to the next slide gate or Doctor Pine, um, and then resources for driving. Um, communication strategies. This is off, you know, a quick one you can just put in to share with the family. And then long-term care planning, uh, the sort of information about how to, uh, better explain all the different resources, um, and lots of contact information for the patient and their family. And then lastly, just an example of safety planning. So, you know, we'll often include this in, in all of our notes, um, just because it gives some, some basic safety information to the patient and their family. Uh, but we'll send out all of these, um, afterwards, cause they can be incredibly helpful. Great. Yeah. And I, um, you know, Lisa and I are here representing a big group of people. We're almost 300 people now at the memory and Aging Center. I think we're the um biggest group in the world that's focused on, um, research and care for neurodegenerative diseases and Uh, I think it's one of our central missions these days to think about how we can better partner with primary care to address the needs around, um, diagnosis and care. So, really excited to, to now turn to the Q and A, um, portion. So one more slide to show you guys before I close out the slides. Um, So you can see here where you would go to learn about instructions for referrals to our clinic. You can see the phone number as well.
