Hello, my name is Jeffrey Kwong. I'm an adult gerontology nurse practitioner and HIV specialist and welcome to this learning activity entitled brain health, cognition and mental health. In these modules you'll learn how HIV can affect brain and neurocognitive health in the context of aging. You learn how mood can impact overall well being. The mental health needs of older persons living with HIV is often complex. These issues may go unrecognized or may remain unaddressed societal barriers as well as other system level challenges, Make access to neuropsychiatric services or mental health professionals challenging for older adults. These conditions can escalate and contribute to decreased quality of life for many individuals in this learning activity you'll hear from Dr David Vance, a psychologist and expert in the field of HIV and neurocognitive health. He'll cover information on the latest research and data on HIV associated neurocognitive disorder as well as provide information on how to best care for this condition. Additionally, Sarah Dobbins, a psychiatric nurse practitioner will highlight other contributing factors that can impact cognition and mental health and finally you'll hear from anna folks, an older adult living with an aging with HIV who will share her personal experience coping with isolation and the impact of stigma and mental health on persons aging with HIV. Thank you for taking the time to view this learning activity for additional information and resources. Please refer to the links provided on the main page of this learning activity. Hello I'm David Vance, a psychologist and researcher at the university of Alabama at Birmingham. Welcome to this module on brain health and cognition. This is one of several learning modules which are part of an ax HIV and aging educational series. On completion of this activity, participants will be able to describe how HIV and aging intersect to increase the risk for poor brain health and cognitive functioning, discuss strategies to prevent or mitigate cognitive decline and adults aging with HIV and discuss general patient assessment and management tools for adults living with HIV, brain health and cognition and adults. Aging with HIV is a huge topic and the knowledge base is growing fast. This module is based on the most current available evidence focused on preventing cognitive decline and reducing the effects of cognitive aging. Designed to introduce RNS and mps to these issues. All learners are encouraged to review the references and reach out to psychologists, neurologists and others in order to learn more about these issues. It's also important to keep in mind that cognitive aging is heterogeneous. These are some of the abbreviations that we'll be using in our talk today, According to the CDC in the United States, over half of people with HIV are 50 and older. It is estimated that by 2030, of people with HIV 15 older will have at least one co morbidity, while 28% will have at least three comorbidities. The most common comorbidities include diabetes, cancer and cardiovascular diseases. When we think of successful aging, there are many components of this, including length of life, biological health, cognitive efficiency, mental health, social competence, productivity, personal control and life satisfaction, cognitive efficiency is an important pillar of successful aging. However, aspects of HIV can interfere with cognition and brain health. HIV impacts the nervous system in several ways. As shown here, it impacts the central nervous system, the brain, the spinal cord and the peripheral nervous system. In our talk today, we will be focusing on HIV associated dementia and cognitive and motor disorders. So how does HIV impact brain health? Well, that's a complicated question with complicated answers. Succinctly HIV crosses the blood brain barrier through infected mono sites. Once there it infects oil sales the infected little cells to create neurotoxic molecules that then increased neuro inflammation and likewise decreased neuronal health Over time. This decreases cognitive reserve and eventually cognitive impairments emerge. Some cognitive decline and cognitive complaints are part of just normal aging. However, people with HIV are at increased risk for cognitive and functional impairments as they age. In fact, approximately 30-50% of people with HIV has some form of HIV associated nor a cognitive disorder, or hand as we call it. Hand is determined by a neuropsychological performance battery. From 5 to 6 normed cognitive domains such as executive functioning, speed of processing attention, verbal memory, spatial memory and so forth. From these measures, we can determine whether someone is performing within their age and educational level. If someone has a symptomatic neurocognitive impairment. That means that they scored more than one standard deviation below their norm for their age and education level in at least two cognitive domains, but their everyday functioning is largely unaffected, mild neurocognitive disorder is the same, except that there's some impairment everyday functioning. So their cognitive impairment could impact financial management, vocational skills, shopping, cooking and so forth. For HIV associate dementia or had. This means that the person scored more than two standard deviations below their age and education norm and two or more cognitive domains. And typically this moderately or severely impacts their everyday functioning. Fortunately we don't see as much HIV associate of inches before it only occurs in about 2% of the HIV population. We do know through a variety of studies that everyday function is compromised by poor and suboptimal cognition. We see this in a number of areas including instrumental activities, evaded living, financial and medical management, medication, adherence. Employment people may be more prone to risky decision making or it may lower health related quality of life, interestingly, it also is related to higher risk of mortality. It is important to understand what the risk factors of cognitive decline are. So we can prevent or mitigate the effects. First of all, not all people with HIV experienced cognitive decline. It is also important to be mindful of the role of cognitive reserve. So what is cognitive reserve, cognitive reserve is the ability of the brain to absorb insults and injury and yet keep working. In other words, the brain can keep functioning and cognition keeps emerging and there are many factors involved in promoting or diminishing cognitive reserve which can impact cognitive aging. This figure is a gross example that summarizes the vast literature on what factors impact cognitive reserve. As we age on the X axis we see the lifespan from young to old and on the Y axis we see cognitive reserve from being low to high. And the line in the middle represents cognitive reserve over the lifespan and represents what things can impact it. So we see our cognitive reserve often increases when we get more education. Also when we're engaged in more occupations that are highly stimulating for our brains. So we also know that more education is just better in general. However, there are things that can also impact our cognitive reserve over the lifespan, depression, anxiety, being one of them substance use and comorbidities. Unfortunately there are things that also promote our cognitive reserve of the lifespan, one of which being social interactions, we are social beings and our brains are stimulated by social interaction. We also know that intellectual pursuits are important. So we'll be talking about some of that as well. And also probably the number one thing you can do to improve your cognitive reserve is physical exercise. There is a mountain of research on this topic and it's been shown that moderate to intense exercise is very beneficial for brain health To get a flavor of these cognitive risk factors. This is a summary of 12 studies on cognition from the women's interagency HIV cohort study from 2013 to 2016. What all these studies have in common is that they find that women with HIV are more vulnerable to developing cognitive pyramids than women without HIV, but it's important to keep them on. There are several predictive factors of this cognitive impairment, one of which is recent, illicit drug use. Another is low reading level or low literacy stress, post traumatic stress, insulin resistance, liver fibrosis and older age surprisingly aged by HIV interactions are not observed to impact your cognitive performance in these studies, these are findings are largely supported by the literature uh In general. However, such interactions may be observed as this population ages. So for these studies, these are still relatively younger. Women with HIV. In fact, age accentuates many of these factors associated with cognitive impairments such as insulin resistance. Other risk factors of cognitive impairment found in the HIV literature include, as already mentioned stress, depression, anxiety, post traumatic stress, age, income, educational level and attainment, reading and reading quality, insulin resistance, hepatitis C and liver fibrosis, cognitive activity and employment treatment status for HIV substance use, head injury and the risk for Alzheimer's disease, such as having the A P. O. E. For lille. If you can measure it, you can change it. That's why it's important to have the tools to monitor cognition in our patients. Uh There are several brief screeners. One can use uh some of the most popular ones are the Montreal cognitive assessment. Sometimes referred as the mocha. There's the mini mental status exam or the M. M. S. C. There's the cognitive assessment tool rapid version or the cat rapid. There's also several HIV screeners as well. These screeners are very excellent for a clinic environment where they can be administered in 5-10 minutes and scored where you can get a general idea of where someone is functioning cognitively from those scores. If one suspects that there is some cognitive decline. That's when there is a recommendation or referral for a formal cognitive assessment. With norms of measures that are known for one's age and education level. And in the blue box here this is an example of such a cognitive assessment. So with such a formal cognitive assessment, assess different cognitive domains such as processing speed, attention, working memory, learning and recall, executive functioning, verbal fluency, motor skills. And there are specific norm measures within each of those. It's also worth noting that more automated uh self administered and automatically scored approaches are becoming available. NIH has some uh leah Rubin has developed the brace plus which is also automated uh neuropsychological assessment that we are adopting in the max and wise as mentioned earlier, a full neuro neurocognitive assessment is used to diagnose hand. The hand criteria I mentioned before is officially called the Frascati criteria and we've already reviewed the diagnostic criteria for that. However, it's worth pointing out the prevalence of each type of hand. For asymptomatic cognitive impairment. The prevalence is around 33%. For mild neurocognitive disorder it's around 14% and for HIV associated dementia it's around 2%. And from this it is essential to point out that most people with HIV do not have cognitive impairment. In addition to cognitive assessment, it is necessary to pay attention to the clinical symptoms of cognitive decline. These include missed appointments or forgetting appointments, forgetting to take medications, confusion and slowing, self reported cognitive complaints, depression and apathy, interestingly changes in smell and poor olfaction, Caregiver partner, friend concerns and problems with everyday functioning. A loss of cognitive ability is a major fear with aging and those with HIV share that concern as well. We conducted a qualitative study of 100 and 39 participants with HIV and informed them about their hand diagnosis And around 10-12 weeks later we asked them what their reaction was concerning. This. Then we coded their verbal responses and what we found was really surprising. Uh 23% of respondents had some negative reactions which is understandable but 80% also had positive responses to this specifically for 26%. This was a confirmation. They suspected that they had some cognitive problems and were not functioning at their full capacity, 23% were grateful for the information we provided them about their hand diagnosis and 21% wanted to do something about it. In fact, they wanted that desire to improve and wanted more information. So what can you do about a hand diagnosis? There are several major areas in which we know we can protect and improve cognition in people with HIV. First is antiretroviral therapy if we can keep the immune system healthy and keep the virus from replicating, we already know this is needed for brain health. Second is treatment for comorbidities, hypertension, diabetes, heart disease, liver disease and so forth. Exert a detrimental effect on brain health. Therefore it's necessary to manage these comorbidities to minimize their negative impact on the brain. 3rd is health literacy specifically brain health literacy studies show that people with HIV need more information about brain health. In fact, this is probably needed with the general population as well. Fourth is cognitive training. Studies show that cognitive training can improve some function in specific cognitive abilities. Finally, there is the active lifestyle studies show that those engaged in work physical activity and social activity may have more cognitive benefit as they age. A tool clinicians may use to communicate these strategies is with a cognitive prescription, reviewing a cognitive prescription like this with patients can help educate them about what things are important for promoting brain health and supporting their ability to think well, as you can see there are several areas in which one can focus a change in behavior or behaviors including physical activity, mental exercise, sleep hygiene, social activity, stress reduction and mindfulness and diet and nutrition and using. This is important to make specific goals for it to work Well, Fascinatingly. Studies show that employment itself is also very beneficial for brain health. When you think of employment, it provides many vectors for increasing cognitive reserve. It provides social engagement. It requires one to learn new skills to keep up with their job. It helps one establish a routine which helps with medication taking medication on time over our with just general health management. It provides purpose and meaning that can protect one from depression and it provides income which has a host of benefits. Unfortunately, according to several studies, only 20-30% of people with HIV are continuously employed, full or part time. That is why for those not working, other ways to protect cognition should be explored. Unfortunately, it's not always possible to improve cognition. Sometimes in light of cognitive decline compensation strategies are necessary. Here we organized a few low tech and high tech suggestions for consideration. Uh so for our low tech considerations, we have medication adherence. One easy, low tech solution is to use a weekly pill box. Many people with HIV report losing items in their home. So it's nice to have redundancies like redundant keys, redundant medications. Some people have problems with episodic memory. So they have a hard time keeping track of what happened. So that's why journaling is a good way of keeping track of events. Mm Monix are a common technique used in all sorts of populations just to help remember things. High tech solutions include Evernote and Wonder List for keeping track of lists and reminders. Uh Electronic calendar is often helpful. There's an ipad version. I know I use my outlook calendar for everything uh for both my personal and social events for some people with HIV, they mentioned that their sense of timing is off so they may spend too much time on one particular task or another. So a 30 30 app might be appropriate or even just a regular timer and to help people with their financial management. Some people might use a check app to help keep up with bills, credit cards and bank accounts. In fact, some people use a banking app these days. I know I do and I find it very helpful. In conclusion, there are several themes to keep in mind and advising patients on how to protect and maintain brain health as they age. These include treat HIV and underlining physical and psychiatric comorbidities encourage patients to continue to pursue interests, especially if they're cognitively challenging. So with this, ask patients what they're doing to protect brain health. Empower patients to be proactive about their brain health. The activity that they're doing needs to make their brain sweat for them to get any benefit from it. So it can't be something easy just like playing solitaire. It needs to be something much more challenging. Start early to protect and preserve brain function. Also be on the lookout for new therapeutic strategies these are being developed and tested all the time and finally recognize that there are compensation strategies available when cognitive problems emerge. Here are some resources for additional information. To assess what you've learned in this module, please answer the following question. Cognitive reserve is an important concept to consider in people with HIV because it helps us understand a how the brain can continue to function when it is exposed to insults such as inflammation. Be how it can be influenced by lifestyle factors across the lifespan. See how it can be influenced by comorbidities across the lifespan. D how people have varying degrees of cognitive reserve. E all of the above. The correct answer is e. All of the above cognitive reserve is influenced by several genetic lifestyle and psychosocial factors. That means there are many strategies in which we can prevent cognitive decline and improve cognitive function and brain health. For example preventing or reducing inflammation will preserve cognitive reserve. Likewise preventing physiological decline will also be protective against poor cognitive health. What is a risk factor for developing hand? A low education level? Be substance use C stress and depression. D. Insulin resistance. E all of the above E all of the above. There are numerous risk factors and protective factors that interact that counterbalance each other's effects on cognitive reserve and brain health. How many adults with HIV have HIV associated dementia a 2%. B 5%. C 14%. De 32%. E 50%. The correct answer is a 2%. The prevalence of profound cognitive impairment is rare in people with HIV. However, we are concerned that as people with HIV age they may be more vulnerable of developing dementia. Finally, thank you for viewing this learning module. Please be sure to view our other modules as part of HIV and aging educational series. My name is Sarah Dobbins. I'm a psychiatric nurse practitioner at the University of California san Francisco. Welcome to this module on cognitive impairment and mental health considerations in people living with HIV. This is one of several learning modules that are part of an ax HIV and aging educational series. The learning objectives for this module today are as follows. First to describe the importance of considering contributing and confounding conditions in hand. To recount at least one approach to cognitive screening and assessment in your clinical practice and to recount at least one clinical management strategy for a client who presents with possible hand. So I want to start here by just reviewing the ideology or the progression of hand. This is a diagram from a paper that I think summarizes things really nicely. It was published in 2020 in the Lancet and what it does is it breaks down the risk factors for neurocognitive disorders in HIV into three groups. First, there's the group of ongoing factors, things that might be continuously affecting an individual and continuously contributing to risk of hand. These include things like hepatitis C infections, diabetes or insulin resistance, mental health conditions, stigma, trauma and violence, the medications that people take on a daily basis, either for HIV or for other um indications substance use disorders, social isolation and loneliness is left off of here. But I added that in because I think it's particularly important and smoking tobacco major risk factor for hand. They also talk about the legacy factors. So these are things that might have happened to a person in the past but aren't continuing to affect them. This includes things like opportunistic infections of the brain or the body or having any kind of AIDS defining illness. Having HIV virus escaped into the central nervous system, meaning the spinal cord in the brain. HIV actually activates an inflammatory process in the central nervous system and this can contribute damage, physical damage um to the central nervous system and it's what we call neuro inflammation and then there's other factors that might be affecting any individual in terms of their risk or disease progression towards hand. This is includes the general process of aging and also genetics, things that someone might be carrying around in their genome, like the O. E. Gene or other genes that haven't even been discovered yet. So I also want to talk to you about contributing and confounding conditions. I'm gonna start by defining what this actually means. A contributing condition is defined as a second level or co morbid condition that occurs in conjunction with HIV. This might include things like lower educational attainment past T. B. I passed stroke, seizure disorders, diabetes, cardiovascular disease. Then a confounding condition is defined as a condition that interacts with HIV. S effect on the brain, leading to a compounding of the cognitive deficit. So this might include things that overlap with contributing conditions. This is where it gets a little confusing examples of both of these things are listed below lower educational attainment, chronic co morbid conditions, hepatitis C or those opportunistic infections of the central nervous system, psychiatric disorders and substance use disorders. This is a really illustrative graph from a paper that was published in 2010 and it really shows you the additional probability of impairment for folks who have those contributing and confounding conditions. So in the middle of the graph there, you can see folks with contributing conditions have a higher probability of cognitive impairment than folks with incidental conditions. Things that aren't thought to contribute to cognitive impairment. And on the far right in the confounding group, there's an even higher probability of neurocognitive impairment. And this graph really shows you how these contributing and confounding conditions, increase the probability of cognitive impairment and folks living with HIV and what makes our lives hard as clinicians is that contributing and confounding conditions, as I mentioned, not only can overlap with each other, but the manifestations can overlap with cognitive and symptoms, mental health symptoms. And it can be really difficult to tease apart and disentangle these conditions from cognitive impairment itself. And it makes the clinical assessment and management of hand difficult, a major contributing and confounding condition that I want to talk a little bit more about is depression. We know that people who are living with HIV are at higher risk of depression. And it's estimated that about a third of people with HIV have a diagnosable depression. This is a construct is also intertwined with loneliness, stigma, isolation and anxiety. Things we know also disproportionately affect people living with HIV to make things more complicated. Depressive disorders affect both subjective cognitive function and objectively measured cognitive performance. And some depressive symptoms overlap with symptoms of cognitive impairment. So it's again, it's very difficult to tease apart what part of your client's experience might be a treatable condition like depression and what might be a cognitive impairment that you might think about working up or managing in a different way. So, I'd also like to do a little bit of a deeper dive into substance use disorders, um, which are both contributing and confounding condition for hand, different substances affect the brain in different ways. And I've listed here on the slide, the current evidence as to how these substances each effect. Um the risk for neurocognitive disorders and what you'll find here is that it's pretty heterogeneous the way that people think that these substances affect people. For example, there's not a lot of evidence that opioids contribute substantially to cognitive impairment, but there's a good amount of evidence that alcohol use is very damaging to the brain and heavy use is associated with cognitive impairment and even may have persist for years after use is stopped. So, substances are very not a lot of known about them and cognitive impairment because it's very difficult to tease apart cognitive deficits from the effects of substances and it's just, it's an area we don't know that much about yet. And more research is needed to understand how substance use affects cognitive impairment, especially because it's relatively more prevalent among people who live with HIV cannabis is an interesting and special case of substance use disorders. There was a recent study published in 2020 that suggested that people who used cannabis actually had a lower likelihood of neurocognitive impairment than folks with HIV who didn't use cannabis, which just kind of throws more complexity into the mix of our assessment, cannabis is used by a lot of people living with HIV to self treat conditions like neuropathic pain, nausea, anxiety, appetite loss and weight loss. And there's a lot of increased access to cannabis now with, you know, state based legalization of medical and recreational use and all of the other studies on cannabis up until recently have been either completely null, showing no effect or showed adverse effects of cannabis on cognition in folks with HIV. So this just goes to show you how much we don't know about how much substances are affecting people, especially cannabis. And it tells us that there's a lot yet to be discovered about this relationship. And it's really important to consider whether your clients are using substances or have a history of substance use in their risk of hand and whether this might be something that you can help them treat. So, moving on to the screening and assessment of hand, some folks who come into your clinic or who you might be working with in an outpatient setting may not be presenting with kind of classic cognitive symptoms in the way that we think of them. They might not be saying I'm getting lost all the time or I'm losing things or I'm having trouble with my memory and concentration, they might be not complaining of anything, or they might be showing different types of behavioral symptoms. And what we know is that oftentimes cognitive impairment can present with these neuropsychiatric and behavioral symptoms, not necessarily with cognitive symptoms proper. So, some common behavioral symptoms associated with hand could include apathy or social withdrawal, a sudden lack of spontaneity or abolition, meaning that it's really difficult to get motivated to get up and go that they don't want to do things anymore. They might be noticing psycho motor slowing, which means slowing of movement to the degree that you would actually be able to notice it. Um complaints of poor attention and concentration becoming emotionally label or irritable all of a sudden and then in very rare cases mania. So in periods of increased goal directed activity and psychosis can be neuropsychiatric manifestations of a cognitive impairment disease process. And it's important to know this so that you can make the proper assessments and also have in your mind. Hey, maybe I should be thinking about screening this client for cognitive impairment while I'm talking to them about their mental health symptoms. There are certain cognitive screening tools that might be useful to you in a clinical practice. The first one I want to describe is the mocha or the mocha B, which is the most mocha basic. Both of those tools are not super time intensive. They take about 10-15 minutes to administer. You need a little bit of training to do it. But in general anyone can do a Mocha. They're not as reliable or sensitive as our gold standard tool of neuropsychiatric testing. However, there's something that you can do with your client during your visit that might give you kind of a general sense of their cognitive functioning and if you do them over time it can give you a sense of how stable this person's cognition is and how they're doing. Another tool I want you to be aware of is the international HIV dementia scale. This is a really useful scale and is good at detecting later stages of cognitive impairment. It's not so great at detecting disease at earlier stages. So it has some drawbacks. But if you are working with someone who you are concerned might have substantial cognitive impairment. This is a great scale to reach for so subjective cognitive symptoms. So when someone comes to you talking about, I'm feeling like my memory is not the way it used to be. I feel these changes. I've noticed that my attention and my focus is off. These are subjective cognitive symptoms and these are important to take seriously. But it's also really important to know that in general, in the data that many, many folks have looked at, there's not a good concordance or a match up between the subjective cognitive complaints and the performance based testing the neuropsychological testing that really gets at the degree of cognitive impairment. In fact, the subjective concerns about memory or attention and concentration more often reflect mental health symptoms. They might be a signal that your client is suffering from a mental health condition such as anxiety or depression. PtsD bipolar, lots of things that might be on your mind and it's not necessarily that they're gonna have cognitive impairment just because they're complaining about memory. This is why it's really useful to have those cognitive screening tools that you can do with your client during your visit. You don't have to refer them for hours of testing to work up a cognitive complaint. And also really useful for you to maybe start asking some questions about mental health, to open up the door to talk about mental health symptoms and to have that on your radar as well. So I just want to summarize what we've talked about so far in terms of screening and assessment for cognitive impairment in your clinical practice, screening for milder forms of hand continues to be a clinical challenge. Often it's complicated by those contributing and confounding conditions that we've discussed. Substance use disorders, psychiatric conditions, co morbid diabetes, cardiovascular disease or brain injuries, really make screening and assessment a difficult process. A psychiatric assessment could be a valuable tool for you once you've opened up the door to those questions with your client about their mental health symptoms and their mental health challenges and screening instruments are a valuable clinical tool, even though they're not the most sensitive or specific. And it can be really helpful to reach for them regularly. So, every few months when you see your client pull out that mocha or that mocha basic for folks with lower educational attainment and try to track how they're doing cognitively. So now we're moving on to a discussion of diagnosis and management and unfortunately this is not clean cut, It's complex and it's hard. Ultimately, your client, if you suspect cognitive impairment after your assessment and your screening tools and your work up there. Probably going to need to see a specialist the gold standard for diagnosing a neurocognitive disorder is a comprehensive assessment. Usually involves neuro psych testing and a neurological exam an M. R. I. Or other brain imaging and functional assessments. So assessing how they're doing their daily tasks there A DLS and their I. D. S. And it's a good idea to prep your client for what to expect during this assessment that it could take a long time that it could be a little bit challenging. A little bit frustrating setting the stage for them to understand why you're referring them for this work up and get a little bit of buy in because it does take a long time to get through other aspects of clinical management of hand are you know not very clean cut. Again, You want to be considering maybe closer clinical monitoring of these clients. Perhaps you're seeing them every year and you want to transition them to every 3-6 months. Um you can decide how often you think you want to be doing a mocha or another screening instrument as part of those visits. A. R. T. Adherence is one of the best ways to prevent hand to prevent that cognitive impairment process. Always talking about adherence and taking medication if you can treat those underlying conditions those contributing or confounding conditions. Depression, anxiety, mental health conditions are oftentimes treatable. That's where that psychiatric assessment and psychiatric evaluation could be really helpful referrals to outpatient treatment like therapy, treating someone's cerebrovascular disease or cardiovascular disease, treating substance use disorders and never forgetting about smoking as a substance use disorder, treating someone's hep C. Something else that you would consider counseling your clients on is to encourage social connections. There's an expanding literature about social isolation and loneliness and the impact of these experiences on cognitive disorders in the general. So negative population, this is very well established that there is definitely a risk of dementia for people who are lonely and isolated and this is expanding also in um populations of folks living with HIV and this. I also want to let you know that there's a lot of research still being done. There's a lot of information still emerging about neurocognitive disorders in HIV. Um so, stay tuned for more information and more research on soluble biomarkers that might help to indicate risk or disease progression. Things that can be integrated into a clinical practice. Um anti inflammatory treatments. Maybe cannabis will be the answer to all of our prayers. Probably not. Who knows, mindfulness based therapies and other non pharmacological interventions are also being trialed right now as treatments for hand and the symptoms of hand. So now I'll just kinda let you know that I've put all of my references and resources on this slide for you. Feel free to dig in If anything was particularly interesting to you or you want to learn more to assess what you've learned in this module, we're gonna do a quick knowledge check. Please answer the following question. Clinical management of Hand includes a treating underlying conditions, be encouraging social connections, see changing A, R. T. Medications, D. A. And B. Only or E. All of the above and the answer is D. A. And the only the rationale is that clinical management of hand includes treating underlying conditions such as mental health conditions or substance use disorders and encouraging social connections to minimize the impact of isolation and loneliness on individuals. Thank you very much for taking the time to view this learning module. Please be sure to view our other modules as part of an ex HIV and aging educational series. Hello, my name is Sarah Dobbins and I'm a psychiatric nurse practitioner from the University of California san Francisco. Welcome to this learning module which is part of HIV and aging educational series um joining me today is ana folks from Baltimore Maryland. She's a nationally recognized HIV advocate and educator who will be sharing her perspective and experiences as a person living with HIV. So anna, thank you so much for joining me today and thank you for your time for stuff. I'd like to hear just a little bit about your experience overall as a person living with HIV. Um well I guess the hardest part was I was diagnosed at the age of 59, so I was an older adult first diagnosed with HIV. And the first thing I found out was there was not a lot of information about HIV and aging and I needed to know what part of me was getting older and what part of me was dealing with HIV and nobody could answer my questions. So I began asking a lot of questions everywhere. I went, I went to conferences, national conferences, I even went to the international AIDS conference and asked questions and eventually over time they began to provide more and more information on HIV and aging. After that, um, I realized that a lot of my peers were uninformed about their vulnerability and they were really very vulnerable. They were misinformed, uninformed, undereducated and that's what started my advocacy. I reached out to my peers to older adults to informed them about their risky behavior and to encourage them to be tested and to take care of themselves and to protect themselves. And I realized it was not just the older adults, it was the young ones too, but it spread to everyone. So that's how I got started. So it sounds like you really had to do a lot of self education around HIV and aging. I did. I really did. Uh, I was fortunate to connect with some people at the university of Maryland in the geriatric department and the pharmacy department that did uh piece once a year on HIV and aging and they invited me there to speak and they had clinical people there? And that gave me a lot of information and allowed me to interact with others that could uh update me on what was happening. What's some information that you would want future healthcare providers or would have wanted your own healthcare provider to know about caring for someone such as yourself who is aging with HIV awareness of aging if you have a primary care uh infectious disease doctor quite often, they're not aware of the aging portion of someone that's older, that you're going to have a lot of comorbidities. Um You're not gonna move as fast, your bones are gonna take, everything is gonna seem like it's wrong. And so they need to slow down take more time. I know they only allow a certain amount of time, but they need to take more time with older adults because like I said, I didn't know if the aches and pains I had were arthritis bursitis. HIV. I don't know what they were, they were just there, my body hurt. And so I think doctors need to be more aware that an older adult with HIV may not present the same as a younger person. Mhm. I'm curious about your thoughts on folks who are aging with HIV and the fear of dementia and cognitive impairment as dr Vance mentioned in his presentation and as we know what he said, is that only a small number of people who have HIV are actually going to develop dementia. Um can you talk about your experience with, you know, the fear of cognitive impairment? Yes. Well, you know, when I was first diagnosed, it was said a lot that you aged faster with HIV so that someone that was 40 may appear to be 60 and have symptoms like a 60 year old person and that you would probably have symptoms of dementia or alzheimer's as you grew older. Um A lot of people worry about that. I they have actually done here in Baltimore, some testing on memory and cognizance of HIV patients at johns Hopkins and I participated because I wanted to know if I had markers that might lead to dementia, fortunately I didn't, but a lot of people still feel like uh they're gonna lose this, that or the other. I have some memory issues. Yeah, some 70 for almost 75. So, you know, I can put my glasses on the top of my head and what I'm looking for him, that's just a part of aging and it is not dementia due to HIV. Uh they don't talk about it a lot. We do have several groups here that are addressing aging and HIV and care for older HIV patients, which is a good thing because they are addressing those cognitive issues, they have found that individuals who are active if they garden if they walk, if they read if they uh do puzzles. Um a number of things, hobbies keeps their mind more active and so they have less issues. Another aspect of aging with HIV and also cognitive impairment is mental health symptoms. And I'm wondering if you would speak about a little bit about your experience with mental health symptoms either for yourself or um, anecdotally with folks in your community. Yeah, during Covid, that's really bad. You know, isolation is one of the biggest problems for older adults. Most of us live alone or if you have a partner, you live with your partner. I saw four of my Three of my four grandchildren on Christmas Day one. I have not seen for five years, one I had not seen for two years and we don't have contact with family. A lot of our friends, our peers are no longer living, so we're isolated and yes, you get depressed, You get depressed because there's nothing to do and you get tired of doing nothing and you don't know what to do with yourself. So it's it's hard. Uh, Covid has made it worse because those that did have things to do, like I used to go out to uh, HIV events and I used to speak at churches. I haven't done this in two years. So I'm sort of stuck here, fortunately I like to do other things like puzzles and read that sort of keeps me mentally active, but the process of being isolated is a real challenge mentally for most people. And for older adults, it's even worse because they don't hear from family, you know, more or less have a lot of friends left at a living. Do you think that loneliness or isolation is particularly pronounced among folks who live with HIV for older adults? Yes, older adults. Um, so many of the older adults felt the stigma of disclosing their status would further isolate them if they only saw their Children or grandchildren three or four times a year and they tell them they have HIV, they may never see them again. The fear of that happening uh, prevented a lot of them from disclosing and unfortunately they didn't realize that disclosure is healthy. It helps you, uh, it helps you health healthiness. It's a weird word, but it makes you feel better inside. You don't have to worry about, who knows if you've already told everyone and if anyone treats you differently because of your status, it's their problem, not yours. Yeah. You've mentioned a lot of things that seem to be really intertwined, you know, mental health symptoms, isolation, especially during covid and stigma and the experience of aging and all of these things are kind of layered on top of each other and can make things particularly difficult. I'm wondering if you would be willing to share about your own experience with mental health symptoms, aside from isolation. Maybe things like anxiety or depression. Well, yes, I will, I, um, I do, or I have suffered from depression. I'm actually medicated, taking medication now to leave that um due to some things growing up in my childhood, I think I was probably suffering from depression as a teenager and didn't recognize it as an adult. I knew I had mood swings, I just didn't feed into it as being a mental health issue. So if I felt uh manic or hyper, I scrubbed the floors on my hands and knees, I channeled the energy, and if I felt depressed, I closed the curtains, I locked the doors. I didn't answer the phone and I just isolated myself for a time until I felt the depression go away and my friends understood, oh, she's in that mood and they left me alone, and and I always set a limit, you know? So if I was feeling depressed, I would say, okay, I'm not gonna deal with people for a week and I didn't deal with him for a week. When the week was over, I'd come back. Hey, how you doing? Not that the depression was gone, but I was able to cope better. Um after I was diagnosed, I had a car accident and the person hit me broadside and that broke something. I just broke down. I started crying, I couldn't stop, I was shaking. And so I went to the er and they put me in a quiet dark space and they gave me medication and when I left there I went to my health clinic and I saw a psychiatrist and she added more medication. At which point I thought I was over medicated. So I stopped taking half of it. But I realized that I needed something. I had had a panic attack And it was the first time and I was like 60 something years old, the first time in my life I ever had a panic attack. But it made me aware that yes, I do have some mental health issues and I do have to cope with them and deal with them. I think my personal blessing is understanding what's wrong, accepting the problem and knowing that okay, this is my problem and I can take the medication which sort of levels me off. So I don't have extreme highs and extreme lows, I'm sort of in between. But I know what's wrong. If I'm feeling down, I can address it as such and say to some, well, I'm just feeling a little down, leave me alone. So that's, you know, my personal uh battle. But it's one that it was harder to deal with in HIV. It's harder to deal with an HIV because first off I had to acknowledge that I had that issue. I had to accept the fact that yes, you have a mental issue and when I look back to my family, I realized several other family members had similar issues. So then accepting what kind of treatment I needed for that. Fortunately when I went through talk therapy and all of that, I had, I had talked to myself enough and I had talked with some of my friends and so my awareness that was not what was needed. But I did take a pill a day and that sort of leveled me off. And um, with the HIV, I mean, I knew I wasn't going to die. I think the medication I get better. So yeah, that was the hardest thing to deal with. Thank you so much for sharing your experience. I know these are really personal details and it's really useful and helpful and valuable to hear about your experience. So, thank you. I'm wondering if you noticed any connection between your mental health symptoms, your depression or your panic attacks and cognitive symptoms, cognitive changes. Uh, I can't say really because I guess because even when I was kind of depressed, I would occupy myself with reading mystery novels. So I was like, take me away from the reality of my life and let me delve into this book, agatha Christie mysteries and things like that. And I didn't have to look at my world. I was off somewhere else. So it wasn't as bad as it could have been. I can understand for a lot of people that the first step is knowing what's wrong, Knowing you have an issue and then you can cope with it. I have friends that have been, we've been friends for 60 years 50 years, you know, so they are the type of friends that will tell me about myself, you know, if I lock myself in and wouldn't come out, they were like, okay, that's long enough, open the door, we're gonna sit out here and bang on the door until you open up and those type of friends everybody needs, you know, So that helped me too. I have family that's very, very supportive, you know, I have four brothers, but I have one that in the beginning when he found out my diagnosis, he called me every day, we live in two different states, but he called me every day, you okay? I'm like, I'm trying, you know, but having that support, knowing somebody cared, knowing somebody wanted to know if I was alright, made a big difference. You've been mentioning the coping strategies that help you deal with your mental health symptoms and the experience of aging and having HIV some of those I think were, you know, having those friendships, those longstanding friendships, people who can reflect back to you what they're seeing? Um, reading, staying, keeping your mind active, maintaining those social relationships. Sometimes medication is helpful. Are there any other coping strategies that you think are particularly helpful for any of the conditions that you're living with? Either HIV depression or those memory changes you mentioned? Well, I will say the biggest thing in my life is having a relationship with God, I pray. I grew up in a church, I have a lot of faith and so I know I have no control over a lot of things that happened to me. I believe God is in control and that he has not let me live this long to dessert me that he always has my back and so I can wake up every morning with a smile and say thank you Lord, I got another day and that has sustained me through everything, having the face that God is there and he cares, he loves me and I love me and a couple of my friends love me too. Absolutely. How did your healthcare provider bring these issues up with you when they were talking to you about aging with HIV. Uh they didn't I did you know they they yeah, I mean they check you out, they listen to your heart, your lungs, they take your blood pressure, your pulse, your temperature, they say how you doing. And I say, oh I'm okay but my back hurts or my knees hurt. I don't know what this problem is. And unfortunately my doctor is very good about saying, well let's find out. And so he sent me for bone density testing. He sent me for x rays to see if I had arthritis or bursitis or asiatica or whatever. And like I said, I volunteered for a memory program that did an extensive brain scan and all of that. So my doctor listens to me um maybe because of my personality because I tell him what I wanna do, I tell him what I'm not going to do. I mean we had a big discussion about having a colonoscopy and I was like I don't want to do that. And he was like well you need to I don't want to do it. I said okay I'll do it when I turned 70. You know? And so he stopped asking. He said well when I turned 70 he said well you're 70 are you gonna do it? So I was like okay I'll do it next year. And he waited till next year and he said your time is up. And I was like okay I'm gonna do it. I said but this is gonna be one and done. And he said we'll see. So I had the colonoscopy and the surgeon that did it when he came when he came in and talked to me I said look I want one and done. And when it was over he came back he says and you have one and you're done, you don't have to do it again. So my doctor listens to me, you know I told him at my age I've never had a bad mammogram, I don't think I have a problem. I know how to self examine. I'm not taking any more mammograms. As I read where a lady said when she was old enough to die and if you're old enough to die there's some things you shouldn't have to do and mammograms are not comfortable. So I decided unless I sense something is wrong, I am not getting another mammogram. And I told my doctor and he said okay, it sounds like you have a really trusting relationship with your doctor. You trust him to listen to you to hear you and he trusts you at the same time to know what's right for you. And that's really wonderful. And also kind of unique. I'm wondering what you would tell people who are maybe struggling with their communication with their health care provider or may not have the confidence to express themselves the way that you do. What advice could you give to those people? I would think um if anyone had questions in their mind that they thought the doctor could answer, write them down because you're not sure you're gonna remember. So the first thing is write them down, take a list with you. Remember the doctor is there to help you And if you don't ask the doctor will not know if you have an issue, the doctor will not sense it. He's not going to read your mind. So you have to advocate for yourself. You have to tell the doctor my big toe hurts what's wrong with it and then the doctor can find out. But speaking up is the best thing anybody can do. A lot of people are afraid to a lot of people have doctors, they don't even like you know and I was like if you can't talk to your doctor you don't like your doctor find another doctor. Don't continue to deal with someone you can't communicate with because that's not going to keep you healthy. So communication is the key. But if you're having a problem just saying what's on your mind, write down what you want the doctor to know or take a friend with you someone that you can talk to and you can tell them look I don't know how to tell the doctor this. You tell them for me and your friend can do that. I've done that for some of my friends who told me they didn't know how to tell the doctor what was wrong. And one friend I could see obviously with having some mental health issues and I said why don't you tell the doctor you need some mental health help? You know she's like I'm not saying that you tell the doctor. I said no problem. So I went with her and I said to the doctor have you ever thought of suggesting that she see a mental health professional? And the doctor said well I was a little afraid to ask her you're the doctor why are you afraid? She said well I didn't know how she would react. So I said so ask her and my friend said well if you think so, okay, so sometimes doctors need a little extra training to be able to speak up and that sometimes is an issue with older adults and doctors because most doctors are young enough to be our Children, you know? And so do you want to ask your mother if she sexually active or your grandmother? No, you don't. But doctors have to learn to ask the tough questions and to consider the health of the patient and not the feeling. So much of the patient is not gonna like me asking this. And with older adults they will answer anything you ask them, they're not ashamed or afraid to answer, but a lot of times they won't volunteer. So it takes a doctor to open the door and then they'll let it out? Sounds like it's really important for doctors to ask those tough questions. Beautiful. Um So I'm wondering if you have kind of on the same topic, you know? This module is not just for um folks who are treating people in an outpatient or primary care setting, but also um nurses and providers who work in long term care facilities in home care, um Hospice care or even inpatient in the hospital and kind of in this vein of like how to ask those tough questions, how to communicate effectively with your patients who are aging with HIV. Are there any other things that you might be feeling like folks might really need to know or would need to hear from you? Well, I think if you're in a hospital nursing home or some sort of care facility, it probably would be more important for whoever is asking the questions to sit down face to face with the person and look them in the eye instead of standing over them and looking down at them because that gives a different perception of, you know, why you're asking me these questions and before you ask um, the medical questions, just ask, how are you, how you feeling today? You know, uh, did you have a good breakfast? You know, just a little bit of conversation because particularly with older adults, they don't have conversation with anyone. You know, it's the nurse comes in, takes the temperature, doesn't even say anything. If the nurse came in and said, hi, how you doing today? You're feeling all right? Let me take your temperature. That's going to make that person feel a little better because they're gonna feel like somebody cares. And so if something is wrong, then we're apt to speak up about it. Great, great thoughts. Thank you so much for all of your wisdom and everything that you've shared. I'm wondering if you have any other thoughts that are um, things that you wanted to share with us today or anything that's on your mind that we haven't already talked about. No. Only thing I would say is for every medical professional to encourage all patients to be tested for HIV as well as covid. Um You know, it's a hard question for a lot of doctors to ask an older adult if they're sexually active but do it. You know, uh knowledge is power and helping your patients understand their risk is a good thing. So just help them learn, help the patients learn and hopefully we will learn in exchange. Alright, well thank you very much anna for all of the information you shared and for sharing so much about yourself. I really appreciate your time. Oh thank you for having me.
BROADCASTMED