Dr. Kristi Williams: The Voice of Ages (Alzheimers, Elderspeak, Dementia)- Episode #18

This is Telehealth Unmuted, a podcast developed by Hartland Telehealth Resource Center. HTRC is one of 14 federally designated Telehealth Resource Centers in the country, serving the states of Kansas, Missouri, and Oklahoma. We know there's a huge need for up-to-date telehealth-related information, from billing and reimbursement to psychology and online therapy. So we're bringing subject matter experts in their insights right to you. I'm your host, Carol Lawler, Director of Health Communication Research Center, and this is Telehealth Unmuted. Dr. Christy Williams is a nurse gerontologist and an E. Jean Hill professor at the University of Kansas School of Nursing. She leads a multi-disciplinary team conducting research to improve care for older adults, focusing on improving care for persons with Alzheimer's disease and other dementia by supporting communication and caregivers. Christy has conducted research with persons living with dementia and their family and professional caregivers using telehealth resources. Her recent research used telehealth to connect family caregivers to experts for caregiving advice. The current study uses online education and training and communication for nursing home staff who care for persons living with dementia. Welcome to the show, Dr. Williams. We are so excited to have you today and to hear about your career journey and insights along the way. I always like to start the show by asking you to give us kind of a description of your career journey up until this point. What? How did you end up here? What led you down this path? Well, thank you for the warm welcome. As a new registered nurse, I was attracted to working in community and home health care. I enjoyed working with families providing care for people at home, especially focusing on older adults who often rely on visiting nurses. I later became a nurse practitioner and then took an opportunity to pursue a doctorate at the University of Kansas' new interdisciplinary gerontology program. I found that the research being done by the gerontologists and our faculty had many applications for clinical care and nursing. My research has worked to develop interventions using behavioral and social science principles in dementia care and looking back, I think I was really fortunate to be in nursing as a profession because of the variety of opportunities to work with patients across the lifespan to improve health. Wow. The incredible, very comprehensive. I'm curious to know, at what point in your journey did you realize your interest in working with people, living with dementia and those living with cognitive functioning decline? At what point did you kind of realize that was an interest for you? I guess when I was in my doctoral study and just seeing the challenges and the special needs of the people and families that were dealing with dementia. And it kind of also keep back to my own clinical experiences with being with older people and their families that have these kind of cognitive issues. Yeah, that is really interesting and I'm always curious when people have a specific specialization, passion, and health care, at what point they got to the spot where they realized that was their passion and so it's really cool to hear about that. I'm curious to know, what is a typical care plan for somebody living with dementia or Alzheimer's? Well, a typical plan for someone who's living with dementia would focus on just to have them live their life, how they want to live it, but it would really be focused on providing a level of support that they need but not more support than they need so that they can continue to function as best they can in their daily life. And it can be really challenging for both family members and professionals, nurses, doctors, or other care staff and nursing homes in that to identify the exact level of support they need and not to provide too much support to allow them to really do as much as they can for themselves to support their autonomy and independence. That makes a lot of sense. And what, thinking about the care plan, what would the care plan need to include when considering telehealth services? A kind of sensitivity to the person's technology, comfort, and experiences and abilities, and you know, that they could really feel comfortable and communicate via a screen versus seeing a real person, so that could be a little bit challenging, probably with the help of family members or significant others, it would be a big issue. How has your work explored the necessity for clear communication between healthcare staff and Alzheimer's patients? Well, I talked before about the tendency to do too much or over support the person who's an older adult with dementia, and that also applies to communication. And there's actually a theoretical model called the communication predicament of aging that details how we have negative stereotypes of older adults, especially those who appear frail or infern, and that this causes us to modify and use oversimplified speech that we might call elder speak when we're working with older persons, especially people with dementia. And the problem with this kind of communication is it's an oversimplification, and it works like you wouldn't want to be talked to like you were a baby, and neither would the person with dementia. It's not recognizing their remaining communication strengths and cognitive strengths. So when someone receives a message that they're from this elder speak that applies, they're not really competent, they can respond negatively with things such as feeling depressed or injured to their self-concept, they isolate themselves so they don't get that message again. And they might actually start to behave more dependently to be consistent with that message that they receive through communication. It's very interesting. It makes a lot of sense why elder speak would be harmful to the patients, because as people respond to the stimuli presented to us, and so there's an element of self-fulfilling prophecy where it's like if we expect these things from people, if we speak to people with a certain expectation, people will often rise to meet that. And so if we're speaking to people below their capacity, that is going to have a tremendous impact on how they view themselves and how they interact in response. Have your patients that have encountered elder speak? They react strongly to that, do they recognize it for what it is, and experience like defensiveness or being offended by it? Well, that's a good question. Some of our early research actually used video recordings of daily care sessions between nursing home staff and residents with dementia, and these video recordings so that we could look in detail at what was going on as far as the staff communication and the response of the resident with dementia to identify how that communication impacted their care. So we used behavioral coding of the staff communication and its temporal relationship to the resident's responsive behaviors. And we found that nursing home residents with dementia were more than twice as likely to respond to staff use of elder speak communication with resistiveness to care or not cooperatively with care compared to when staff talked to them with a normal adult to adult communication. Wow. And this resistiveness to care is just a way to look at the responsive behaviors of persons with dementia who can't readily communicate with their caregivers. So it could range from just frowning to show displeasure or physical gestures such as turning away or even pushing a caregiver away when they try to assist with care, or such as like if you were trying to watch somebody's face or something or feed them. And we believe that these people with dementia who are not able to verbally communicate with words, maybe lie on these behavioral responses to indicate that their needs, such as the need to be treated as an adult and communicated with to their capacity are not being met. Wow. Because these findings we explored ways to educate nursing staff about elder speak, why it occurs, and how to use better communication. Fascinating. It makes so much sense, and it breaks my heart to hear that this is something that is ongoing in this community. I'm curious among healthcare professionals is it a common term at this point, do you think most people are familiar with it, or is it still something that's still being acknowledged in the healthcare community? So the term elder speak? Yes. Well, some people, it's becoming more recognized, but certainly, if people don't know the term for elder speak, when you play them an example or describe this kind of baby talk, the honey dairy sweetie words that are inserted, most people will readily recognize it. And I think it's important to say that people who use elder speak are really trying hard to do a good shop, job, communicating and show they care, they just don't actually realize some of the negative messages that are implied by that communication. What issues arise in how nurses and healthcare staff, how they communicate with patients experiencing Alzheimer's and dementia, how do these issues inform telehealth care as well? Well, although our nursing staff education and communication to overcome elder speak was first provided in a traditional classroom setting in person, this format had a number of limitations. For example, the nursing staff are very busy, so it was difficult to get them to be able to attend in a group session, and there was also travel considerations to go to different places where nursing homes were located. Based on that, we worked with an instructional design team to transition this educational program to online module format, so not exactly telehealth because it's asynchronous, but similar to telehealth, it provided that content in a more flexible format, so there was increased access for people to the training. And we're currently testing that online training in a clinical trial for staff in over 100 nursing homes across the nation. That's fascinating. And across the nation, are there specific hubs where these will be located? Are they primarily lig in the Midwest, or is it truly just across the US? No, we actually have a stratification grid. We're looking for all the different regions and different sizes and other types of characteristics of nursing homes to reach staff and residents of all kinds. Wow. That's really interesting. I'm curious from a research perspective, do you anticipate the success outcomes to vary depending on the region within the country, or, I guess, because we have such diverse landscapes, we have rural urban communities across the US, that impacts population, lifestyle, all of the things. So, therefore, I'm curious that if it would also impact success outcomes for the patients, do you have any, like, you know, kind of anticipation about that either way? Well, I guess we don't really have a lot of strong hunches, but we realize this is an important question. And so we're collecting information and we'll use that in our analyses to see if there are certain things about areas of the country, or sizes of nursing homes, or whether they're rural or located in a city that impact whether this intervention is successful and how residents respond. How has your work explored the benefits of using telehealth to facilitate communication between nursing staff and patients with dementia and Alzheimer's? Well, so basically, using the program with the online access to the training is really the main way we've been working to improve communication and evaluate how that affects care in the nursing home with the staff and patients with Alzheimer's and dementia, kind of the primary outcomes or goals of our research to improve communication by the staff in the nursing home, and then evaluate whether that improved communication reduces some difficult behavioral and psychological responses of the person's living with dementia after staff do this training. So there would be more cooperation and a better experience for both staff and residents. We're able to review clinical data that's collected by Medicare, the Center for Medicare and Medicaid Services on all nursing home residences at quarterly intervals, to be able to see if behaviors change over time related to when their nursing home participates in the study. We can also look at medications that are prescribed to control some of the behaviors that are really problematic and are hoping that improving communication could reduce the need for the inappropriate medications. Thank you so much for providing such comprehensive answers. This is really informative and helpful for our listeners in understanding the complexity of Alzheimer's dementia and the intersection with telehealth, kind of switching gears a little bit, a big part of our work in healthcare, in medicine, and especially in the digital space is innovation, we're always innovating, we're always applying new research insights to better modify our programming and subsequently serve our communities and our patients better. The ultimate goal of taking care of our patients, and so I have a series of questions really looking at the innovative aspect of your work and just starting right off, what changes in innovations in care for patients with dementia and Alzheimer's have you seen throughout your career? I'm sure there's many, but are there any that really stick out to you as kind of, as that stick out to you as very profound? Well, actually there's quite a few and as technology continues to develop, there's continued mostly more ways to apply technology to get care for people with dementia and it's really exciting to see this progress and consider the ways that this can improve care. Some examples would be tracking sensors to locate and keep safe persons with dementia who wander, use of sensor technologies in homes or apartments that can identify changes in an older adults daily routine that indicate that they might be having a health issue, advancing dementia, and also use of wearables to caregivers of elevated stress levels in themselves or their care recipients. All those are some, I think, really exciting new developments. Immediately, my question is, how do you think technology companies end up being able to find significant problems that need to be addressed? For example, how do they pinpoint that elevated stress levels or something that they could potentially monitor in patients? Like, how do they end up prioritizing certain indicators of health and well-being that could be really helpful for this community? Well, there are some basic stress monitoring factors that are pretty readily evaluated by wearables and that, such as when you get excited or you get nervous or you get upset, your pulse rate goes up. So seeing an ink, there are also different electro-dermal signals that, like, little electrical signals that can be picked up by some of the more advanced wearables that are strongly connected with stress. Right. I mean, stress-pleasy, major role in our health and well-being, you know, across the other factors, too. I mean, stress-impacting sleep, sleep-impacting stress and less cycle. I'm sure I'm overlooking others as well. If there's any others that come to mind. Well, and, you know, the sensors can monitor sleep. And if the person's sleeping well or having a change in their normal pattern, all those just different aspects of life, I mean, even things like, if they're not taking their medications, they have different devices so that it can, you know, tell if the medications are being taken. So if there's a lot that can be done using technology. Fascinating. It's really cool to be in the world we're living in where, you know, technological innovations are just popping up left and right. And we're getting smarter and smarter and more aware of the information that we're able to capture. I'm curious, a perfect little segue. What technologies or strategies for treating dementia and Alzheimer's are you most excited and hopeful about? Well, there's new research currently going on that explores the use of social companion robots that it would be a robot. It might look like a pet or not, but it could be used to help reduce isolation and the isolation's additive effects on loss of cognition. So that's an exciting and promising new technology. I think future applications might even use natural language processing with the potential to identify changes in their communication complexity to identify changes in their cognition, need to be followed up on. And this capital lies on the fact that your speech relies on multiple cognitive processes that are affected by Alzheimer's disease and other dementias. And as disease modifying treatments for dementia are now being developed, and they need to be used when a person's in their very early stages, identifying these subtle changes is really critically important to get the treatments to people to prevent further decline. I'm just very impressed by the level of brain power and intellect that's being put into this industry. Obviously, very interested in the role that Telehealth is going to continue to play. How do you see the rising role of telehealth in healthcare impacting the future of your work in dementia and Alzheimer's? How do you think telehealth will impact those two subject areas? Well, I think that telehealth can really supplement, but not totally replace, care by family and professional healthcare providers. It can be used not only to connect persons with dementia and their caregivers in the community to access experts in the field, but it can help caregivers realize what a care recipient's condition has changed. I think that connection is really important because there is a limited amount of people with expertise in dementia. So, for example, rural areas don't frequently have the expertise that major metropolitan centers to do, so that's really a strategic way to be able to improve access to care. Also, looking at the potential for telehealth to improve dementia care, the National Institute on Aging, they're part of the National Institute of Health. They have actually identified a number of new areas to focus research on moving forward, and telehealth is one of those areas that they're requesting research to further that along. So, it is really important. I, you know, there's something that really stuck out about what you said, and it is telehealth, you know, can play an instrumental role, but there is an level of human connection that we need that extends outside of virtual care. And I think that's an ongoing concept that people in the telehealth world, you know, are considering and working to, you know, innovate with and adapt to, you know, the human choice that we need, that level of community and engagement. I'm curious to see what happens going forward because, you know, we have, we have moved leaves and bounds in the last couple of years, you know, especially as a result of the pandemic. So, it will be interesting to see what the telehealth landscape looks like in five years and ten years. I can't even really fathom it, especially with, you know, the rise in AI and robotics. I mean, there are things that are happening in real time that, you know, are just hard to like conceptualize. So, it's, it's one of my favorite parts of being in healthcare in this world is, is watching and having a front-seat view on the innovation that's happening in real time, you know, that will ultimately save lives and help people. So, well, and it's interesting as a nurse educator, we're starting to incorporate providing a telehealth care in our curriculum for our nursing students and other health professional students, which will be really important as well as doing research to see how to do it the best way possible. That's awesome. Yeah, I've heard that a lot of medical schools as well have really started implementing that into their curriculum because, you know, it is a fundamental, established route in healthcare that is here to stay. And so, I do think it's important that, you know, our future providers are educated and aware of its existence and also trained to to be part of it and to serve people via, via digital care. So, as we kind of wrap up today, I always like to reserve time at the end to ask, is there anything that I didn't ask that you would like to cover across, you know, your work in dementia and Alzheimer's, your work as a nurse educator? Is there anything that you want to talk about? Maybe just to say that exploring and trying out how telehealth can advance care for people with dementia and the people who care for them is really because of the growth of the older adult population and the fact that the number one risk factor for getting Alzheimer's disease or another dementia is an enhancing age. And that it's currently estimated that we have like six plus million people with dementia and this is going to grow pretty much exponentially. Not only the person themselves with dementia is affected because it's now estimated that we have 40 million family members that provide at least 20 hours of care for a person with dementia every week. So, those people can also be supported through the use of telehealth. I have so many follow-up questions to that. I'm curious immediately as family members, as supporters of the patient with Alzheimer's or dementia, how, as an educator, would you recommend they support that person? Or what are like, I guess the common, you know, core steps that you can take if you have a family member or friend that is diagnosed with these conditions? How can you, how can you support them? Well, I guess it kind of depends where they offer in the course of their disease. I mean, initially, despite be reminding them of things, you know, assisting with more complex things like balancing the checkbook or whatever. Then, unfortunately, as the thinking processes and the cognition continue to decline, they lose more simpler activities so they might forget how to brush their teeth or might need assistance with personal care activities such as bathing in that. So, and I guess the real challenge is like we talked about before, is to the help that they need to be able to live comfortably without overdoing it? Because we want to maximize the person's remaining abilities. Yeah, that absolutely makes sense and it kind of goes full circle to the beginning of our conversation, talking about elder speak, and just like you said, upholding the dignity and the the personhood that we are all entitled to, regardless of the conditions that we're facing. Is there anything, you know, as a subject matter expert, as somebody, you know, that's very heavily involved in these subject areas? Is there anything that you think is a common misconception or something that people, the general public doesn't really know about dimension Alzheimer's? There might not be, but I'm curious. I feel like since I have the knowledgeable expert here, I might as well ask, maybe what people don't understand the most is how stressful it can be to be a family member caring for someone with dementia and being there are kind of concrete ways like you might have to just work part time because you might need to be there, you know, you might not go spend as much time with your family. But there's also the stress of seeing this person that you've had a long-standing relationship with, you know, maybe your life partner or your parent change, so that they almost seem like they're not the same person. So that's going on as well as having to actually do activities to, you know, physically support them. So that really adds to the stress of this group of caregivers that are taking care of most people with dementia at home. Yeah, I can imagine that would be very difficult. And I think in the same way that, you know, we're holding space and support for the patient, also space and support for the family, the caregivers who's recognizing, you know, the challenges and the emotional toll that it takes on them to be, you know, taking care of this person, I think is also very important and maybe not talked about enough. Very interesting. Well, those were the primary questions I had. If there's nothing else, I think we can wrap up this interview. Sounds good. It has been so wonderful to have you on the show and thank you again for all of your knowledge and being able to share this with the community is incredibly important and we're grateful to have your perspective. So thank you again. Thank you for having me and letting me talk about my area of interest and ways that, you know, we might improve care for people with dementia. Absolutely. Thank you. This has been Telehealth Unmuted. Be sure to share this episode and subscribe to hear future interviews with leading experts in the field. This podcast was made possible by the Heartland Telehealth Resource Center through grant number U1 UTH 42530 from the Office for the Advancement of Telehealth Health Resources and Services Administration and Department of Health and Human Services.