Search for tag: "geriatrics"

Interviewer: With aging loved ones in our lives, we always kind of in the background of our mind are worried about them developing some sort of a cognitive disorder like Alzheimer's and dementia. But it gets a little tricky because general memory trouble is also a pretty common effect of aging. So the trick is how do we as loved ones recognize cognitive impairment and when it's just our loved one having a senior moment?

Dr. Michelle Sorweid is a geriatric physician and a cognitive disorder specialist with the Aging Brain Program at University of Utah Health.

Dr. Sorweid, say an older parent or loved one seems to be forgetting things. Maybe they use the wrong words for things fairly consistently, tell the same story every time I see them. Are these things that I should be worried about, or is that just part of getting older?

Dr. Sorweid: If someone came up to me and asked, "What should I be looking for in my loved one?" things that are commonly noticed are short-term memory changes, so repeating details of things that you know you've talked about before, especially if they're really important topics, but maybe not necessarily. And then there is a really common presentation where people might not recognize these changes in themselves. It's probably going to be others, like loved ones or coworkers or even acquaintances, that notice these changes.

Interviewer: Let's start with, first of all, as an onlooker, what are the different types of cognitive impairments that I should be aware of, and how do those kind of show up? Or are there too many really to talk about? Can you narrow that down for somebody?

Dr. Sorweid: There are quite a few. There are over 100 different causes of memory and thinking changes. But I would say a lot of them have many overlapping characteristics.

The one thing that I want to definitely make sure people are aware of that's less commonly known is that short-term memory isn't the only presenting symptom. Sometimes we might see things like personality changes or even severe depression or what seems like severe depression. So kind of lack of interest in their day-to-day activities, things they used to enjoy. Those can be signs that something is changing in the brain.

You mentioned word-finding difficulties, whether it's substituting words that don't make sense or describing words instead of using the word they want to use, especially things like common words. We all have "senior moments," but really those becoming more and more frequent or, like I said, using words that maybe don't quite fit.

Interviewer: Do you find that some patients kind of ignore these symptoms, first of all, as we already talked about, because it's just kind of attributed to "Oh, just getting older"? But maybe because there's a little bit of a fear of what they might find out?

Dr. Sorweid: Absolutely. I think there are a number of reasons people tend to not want to seek help. There are a lot of cultures specifically that have a stigma against people with memory and thinking changes. I know spending a lot of time with Hispanic communities throughout the world, the word "dementia" in Spanish means crazy. And so we try not to use that word specifically for certain communities.

But yes, there are a lot of reasons why people might not seek help. Again, the lack of cures for a lot of these diseases. But I think the one thing that patients and families may not realize all the time is that part of this disease process oftentimes includes lack of insight or not being aware of one's own deficits. And so that's really difficult to navigate as a family member of someone you know is having changes and they insist that they're not and that things are fine. It might be tricky getting them to even see a provider to figure out what's going on.

So we encourage our families and patients to seek this type of screening assessment or visit as maybe just seeking a baseline and finding out where things are at. That way, if there are changes down the line, we have a comparison.

Interviewer: And as a family member, if I understand correctly, a primary care physician actually has access to some screening tools. So one could accompany an older adult to an annual type physical or health checkup and request that these screenings be done if, I guess, they're having difficulty convincing the individual. Or is that the kind of trickery you wouldn't recommend?

Dr. Sorweid: No, I would really encourage family members to present to physician visits with their loved ones and provider visits. So that is something I would definitely encourage.

And then spending time with them in their own home can be really helpful and eye-opening and seeing what's going on day to day, what's going on with their medications and how they're managing them. What does their home even look like? That can be really eye-opening.

But yeah, seeking help from their primary care provider can be really helpful and asking for something like an annual wellness visit, which is covered by Medicare.

Interviewer: Back to the afraid to acknowledge it because for fear of finding out that they might have a cognitive impairment that really not a lot can be done about. I understand that a lot of causes could also be physical, that if you take care of the physical, then the cognitive issues clear up as well. Talk about some of those physical symptoms that might present that would go hand in hand with cognitive issues.

Dr. Sorweid: Absolutely. So we know that there are a lot of things that we can treat and intervene upon as far as preventing further decline or treating symptoms related to memory and thinking changes, so things like high blood pressure, diabetes, high cholesterol, abnormal heart rhythms, sleep apnea. So there are a lot of different changes that we know make an impact on memory and thinking, on the brain.

Interviewer: Do you find that patients are afraid that they're going to find out that they or their loved one have Alzheimer's? I mean, is that the inevitable outcome if you start noticing some cognitive decline?

Dr. Sorweid: Not all memory and thinking changes equate to Alzheimer's disease. Not all memory and thinking changes equate to a dementia process. That's certainly a possibility, but the earlier we know what's happening, the more we can make an impact on someone's quality of life.

There are oftentimes things we can do to really improve someone's day-to-day, such as harmful medications that either are over the counter or may have been prescribed by a provider just lacking that training with older adults. There are mood disorders that can be treated and improved. I have some patients who've come to see me that thought they were developing a dementia process and it turns out they were just severely depressed. And so we were able to help them in that respect.

Interviewer: So it's really important for loved ones or acquaintances or friends to bring this up with that individual. Do you find that the individual is pretty open then to seeking help, or not so much? And if so, how can you help them get help?

Dr. Sorweid: Yeah, not always because of what we call lack of insight, which is very common in older adults with memory and thinking changes. They may not recognize what's going on in the brain. The brain is kind of playing some tricks on them. They may not recognize what's happening in and of themselves. So they therefore might not be as likely to seek help or be amenable to someone else saying they need to.

So I think I would try to take the approach of, "This is just an assessment to see what your baseline is there, and if there are changes down the line, then we have this baseline." It's a part of just your general health, just like getting the flu vaccine or getting screened for depression or a mammogram.

Interviewer: And then if somebody does come in and they have the assessment, which you can just get at your primary care physician as they have access to these tools, and it comes back, then what would potentially be the next steps at that point?

Dr. Sorweid: So asking for that assessment from your primary care provider through the Medicare annual wellness visit, which is covered by Medicare every year, is a really good first step. And then if your primary care provider isn't as comfortable about taking next steps, for example, certain blood work or MRI or additional testing, then that would be the time that you could request a referral to us for additional workup.

Interviewer: And the sooner that you address cognitive issues, the better. Explain why that is.

Dr. Sorweid: It's really difficult to fight fires when the fires have already started. It makes it harder for us to make a large impact on families and patients when things have kind of escalated to the point where we're, again, just fighting that fire. So the earlier we know something is happening, the more impact we can make as far as quality of life, slowing decline, avoiding harmful medications, assessing sleep, and treating any sleep disorders. There's so much we can do early on.

Interviewer: And tell me a story about somebody who recognized cognitive impairment in a loved one and did something about it. How did it, in your opinion, change the course of that individual's life?

Dr. Sorweid: I do specifically remember a patient who was in the hospital for severe memory changes and also some harmful thoughts about herself. And when she was discharged, they told her she had dementia. When she came to see us, we discovered that she was actually just severely depressed. And she was actually doing really well functionally after receiving treatment for her depression. She did not have the type of dementia they suggested. She had severe depression.

So there's a lot we can do if someone has true memory and thinking changes early on. Again, I have so many examples of giving them the right diagnosis and helping families understand what's to come. There are a lot of conditions that can affect both mental and physical well-being. And so even if it's as simple as getting the patient the appropriate targeted physical therapy, or an assistive device like a walker or a cane to help them with their motor symptoms that might be related to one of these conditions, that can really make a large impact in their quality of life.

It's hard because of the stigma that goes along with these cognitive disorders. Like I said, there aren't a lot of cures for these conditions, but there's so much positive impact we can make that doesn't necessarily include medication.

Interviewer: The Aging Brain Care Program at University of Utah Health offers a range of services that help prevent, manage, and educate patients and their loved ones about memory and thinking disorders as they get older.

Dr. Michelle Sorweid is a dementia and geriatric specialist who works with the group. Dr. Sorweid, now there's a lot of different cognitive disorders. I think a lot of us laypeople just think of memory disorders, like Alzheimer's or dementia. So why don't you walk us through some of the things the Aging Brain Care Program can help with?

Dr. Sorweid: Yeah. So the most common question that I get is, "What's the difference between Alzheimer's disease and dementia?" And I try to use kind of a picture or imagery of an umbrella. So the comparison I use is actually cancer or kind of a broad term. So dementia meaning folks who've had decline in memory and thinking in one or more areas over time and that has impacted their day-to-day life, meaning they might be needing help with things like managing their medications, managing their finances, there might be errors in driving, things like that. And so Alzheimer's disease is the most common cause of dementia, and so that's why it often gets overlapped with one another. But there's quite a few other causes, as you mentioned, things like Parkinson's disease and things in that family of conditions. There may be blood vessel disease causing someone's symptoms. And there's quite the spectrum, you know, before someone reaches a dementia syndrome or qualifies for that diagnosis. There may be symptoms that are consistent with normal aging or something we call mild cognitive impairment. And so that's kind of the spectrum we look at and help diagnose and determine, you know, what's the cause and how can we intervene to prevent decline.

Interviewer: You mentioned diagnosis, which is generally, in a lot of conditions, the most important thing, is to figure out actually what's going on, and it could also be one of the most challenging things. So a specialty clinic like this, how can you make a diagnosis more efficiently, more effectively, more accurately?

Dr. Sorweid: So just like when someone comes in with a cough, we usually need more information to figure out how we can treat that cough or how we can manage it. And so it's a little trickier because we're talking about the brain. But we do a pretty thorough physical exam and history, just as with any patient coming in with specific complaints. I usually like to have a brain MRI, because that's how we take a picture of the brain. It's the most specific way to look at it. And then we usually do additional, more objective testing. So if someone, you know, comes in with a specific complaint and symptoms, we don't necessarily just rely on that. We need some objective information. So we usually do a screening assessment and then, depending on the situation, might refer them to much longer, you know, three or four hours of memory and thinking assessments.

Interviewer: And after you have the diagnosis, then you would move on to what can be done about it. And as a layperson, my perception is, a lot of times, there's not a lot that can be done about it because it's part of the aging process, and once the cognitive decline starts, I mean, there's really no stopping it. There's no cure.

Dr. Sorweid: Absolutely. It's a common misperception that having memory changes is a part of the normal aging process, and though it is common, it is not normal. And so that's one common misperception, that memory changes are not necessarily a part of the normal aging process. And then, in addition, another common misperception is that there's nothing that can be done, and unfortunately, a lot of physicians have perseverated that misconception. And so, unfortunately, we're kind of working with an uphill battle because a lot of that has pervaded throughout the medical community as well. And that's why I kind of mentioned earlier is better. There's more we can do from a standpoint of intervention the earlier we know symptoms are developing. So that includes things like managing blood vessel disease risk factors, like high blood pressure, high cholesterol, sleep apnea. There's a lot of different conditions that we know we can treat and, therefore, prevent decline or slow decline.

Interviewer: So like physical conditions that could be causing that.

Dr. Sorweid: Absolutely.

Interviewer: Oh, okay. Well, that's encouraging because that's something that, you know, one could take care of.

Dr. Sorweid: Exactly. And so that's one piece of the puzzle. But the other piece is that a lot of families and patients aren't really well prepared for some of these changes, and knowing the diagnosis really helps us help them plan for their future, know how much financial impact this might make, know what to do as far as treatment goes, because the treatment varies depending on the diagnosis. And you may have heard in the news, there actually recently was a disease-modifying drug approved in early Alzheimer's disease. So we are looking at more and more options for treatment of Alzheimer's disease specifically.

Interviewer: And at the Aging Brain Care Program, you have a lot of different individuals that can help support that family, not just physicians and neurologists but also social work support and psychiatrists as well. How do they play into helping somebody that has a cognitive disorder?

Dr. Sorweid: Absolutely. So we have a social worker who helps provide both disease education and helping manage the expectations of families and patients as far as, again, you know, what is this disease going to look like, what do I need to prepare for. So she does a great job at supporting these families and ongoing management. We also have our geriatric psychiatry nurse practitioner who is amazing. And, you know, we know that depression is a very common symptom that goes hand in hand with a dementia process or cognitive disorders. And so she's a key player in our team in helping manage these patients.

Interviewer: And what is your ultimate hope for a patient that comes into the clinic when they leave? What would be the ultimate best outcome for you?

Dr. Sorweid: I think just kind of dissuading these common misconceptions that we discussed, is that we can do something to help them, that there is hope, that they are well supported, that they don't just get a diagnosis and scooted out the door, but that they have a team on their side to help support them through this journey.

Interviewer: It seems to me, you know, the purpose of a lot of health care is to improve quality of life or maintain quality of life. How important is that to what you do, and what does that look like?

Dr. Sorweid: Absolutely, and that's kind of the common theme in geriatrics, specifically, is that quality of life is our most important goal.

Interviewer: And what does quality of life for somebody who has some sort of cognitive disorder, a memory or thinking disorder look like?

Dr. Sorweid: That's an interesting question. I think that's a very evolving question and very patient-centered, meaning that may be very different for any one individual person. That might change from year to year or month to month even, and that's something that's kind of a moving target for a lot of people. So it's something that we have an ongoing discussion with patients and families about.

Interviewer: So the Aging Brain Care Program, is it just for people who have already started noticing a decline in their cognitive abilities, or could a person come in and access your services that would benefit them before issues start to arise? Say, you know, they have a family history and they suspect that that might be an issue in the future, and they want to be proactive about it.

Dr. Sorweid: I've certainly seen patients and families who have a strong family history of dementia or who have some mild symptoms that they've noticed, and perhaps all of their screening turned out to be more of a baseline or normal, and so that is an option. I think, traditionally, that's not typically who we see in our clinic. It's mostly patients who have had some symptoms even though they may be mild. But the key thing that I would focus on with regards to a healthy aging brain is that a lot of these interventions really play a role even in midlife. So we know now that there's data that shows controlling blood pressure, even to possibly a more aggressive level, can actually help prevent mild cognitive impairment or mild memory changes.

Interviewer: When you start to recognize cognitive decline, at what point should you really consider coming into the Aging Brain Care Program? At first outset? Because, I mean, some of us can feel really weird, you know, if it's just one thing or a couple of things. How do you help a patient navigate that thought process?

Dr. Sorweid: I would really encourage at the very onset of any symptoms to seek help. Worst case scenario, you're seeking help earlier than what is needed, and, I mean, that's a good thing. Then we have a baseline. And really seeking help early, again, just kind of focusing on those interventions that we know are helpful can really make a difference in someone's quality of life, whether or not they are aware of what's to come. You know, if a loved one is complaining of, "Hey, I misplaced my keys," or "I'm forgetting names more often," there's a chance that's due to normal aging, but there's also a chance that something else is going on, especially if it's a change for them.

Interviewer: Do you recommend that somebody go to their primary care physician first, or when they start recognizing these symptoms, is it just better to come to the Aging Brain Care Program first?

Dr. Sorweid: I think if someone has a really great relationship with their primary care provider, they know them well, they're already established with someone, that is a really great place to start. There's something called the Medicare Annual Wellness Visit, and that provides all primary care physicians the opportunity every year to screen for a lot of different conditions, including cognitive disorders. And so that's something I would encourage patients to ask their provider to use as far as a tool to screen them for any problems with memory and thinking. And then, yeah, so next step or if they feel that their primary care provider doesn't feel comfortable with any of those screening assessments, then, yes, we're happy to see them.

Interviewer: And we're really fortunate to live in the Salt Lake City area and have access to University of Utah Health and the Aging Brain Care Program. How can individuals who are not in the immediate area access this great resource?

Dr. Sorweid: One of the silver linings of the COVID pandemic is having access to telehealth, and so that's one opportunity that we have to offer visits for our patients who maybe are limited by distance or who have a difficult time physically getting to the clinic. It's not ideal because there's limitations with physical exam or if they have difficulty, as many of our older adult patients do, with a video exam. But generally speaking, they're with a loved one who can help with that, so that's one opportunity. And then just to keep in mind that many of these visits aren't super frequent. It's up to the patient to how often they come to see me or one of our other providers.

Interviewer: Yeah. And a combination of perhaps those ways of visiting might work out too, I'd imagine. Maybe the initial visit is in-person because, you know, you can facilitate more of the types of physical examinations that you need to do, and then more of the follow-up visits could be virtual. Dr. Sorweid, if patients are in the Salt Lake area, where are you located, and what is the best way to reach you?

Dr. Sorweid: Located on the main University of Utah Hospital and Clinics campus, just at the corner of Mario Capecchi and Foothill, 555 Foothill Drive. And our clinic phone number is 801-581-2628. Just asking for a referral from your primary care provider would be appropriate, but we also take self-referrals.

Interviewer: If you or a loved one would like more information about the University of Utah Health Aging Brain Care Program, you can find a link to their website included in the description of this podcast.

Interviewer: Sheltering in place because of COVID-19 can increase anxiety and also the feelings of isolation, which are already a threat to older adults.

Gerontologist Dr. Mark Supiano is the Chief, Division of Geriatrics at U of U Health. And if you have a loved one that's 65 or older, that's at high risk, they've been staying at home, how can you keep engaged with them and make sure that they remain mentally healthy? We think about the physical aspects. We don't always think about the mental aspects. Explain what you mean by that.

Dr. Supiano: So, Scot, we're very concerned about the deleterious effects of sheltering in place, particularly for people that were alone already. So this is only heightening their sense of loneliness. We know that loneliness itself is a risk factor for bad outcomes for health. So if you're not able to feel connected with other people because of the physical restraints or physical restrictions that were now imposed on people, those risks could really further escalate.

So in terms of anxiety levels, so what we can do to try to lower these risks or make people feel more connected, making sure that those connections still happen even without physical connections, whether you can do that virtually through a simple telephone call, through a video chat with some platform, but maintaining your connections with family, with friends. Have a daily call. Make sure that you're connecting with someone on a daily basis, that someone is checking in with you.

Interviewer: Being a grandparent is a joy for many, many people that has been kind of taken away, right? You're not able to interact with the grandkids as much, which would also lead to the things we're talking about. Do you have any tips for how that could take place in a safe way?

Dr. Supiano: So I'm in that same boat actually. So my grandchildren are in various parts of the country, and I have not seen them for months. And unfortunately, it will be several months more before we'll have that opportunity.

So maintaining video or, you know, telephone, video chat, we're living on FaceTime and those connections are very important. For people that have the families closer to them, there are still ways that you can interact with your family members while adhering to the recommendations about maintaining physical distance. So it's time and density and protective equipment. Minimizing the time of that interaction, maximizing the distance, so the density, make sure that there are a few people, that you're keeping at least six feet apart, and wearing a mask and making sure that everyone is masked to minimize those risks.

So those types of interactions can still happen, but you need to be careful that the restrictions that we've talked about are still in place and also that your family members, your children or the grandchildren have not been lax about their protective measures. So if they've been out in a group, if they've been out at a party, or with, you know, a group of their friends and there were 100 people there, they're potentially a carrier, and I'm not sure I would want that person, that family member getting close to me.

Interviewer: Which brings up a great point, right? There's a lot of . . . we're learning more and more that asymptomatic carriers, there's a lot more of those out there. So you might not be experiencing any symptoms at all, but you could be spreading it and that would be . . .

Dr. Supiano: Exactly. So if you've had a potential exposure, you should stay away from your older family member.

Interviewer: Yeah. So part of it comes from me realizing what my situation and being honest about that, and part of it is also implementing these protective things. What could I tell somebody in my life who is an older adult? You gave us some ideas of I could, you know, maybe make a phone call, do a video chat. Are there some other pieces of advice that I could give, like a parent or a grandparent, as to how to stay mentally healthy?

Dr. Supiano: So great question, Scot. I think the first point, and this comes from our mental health experts who have been careful to point out, for all of us to hear, that right now it's okay not to be okay and just recognizing that as a fact that everyone's in this together. We'll get through it together. And if you're not okay right now in terms of heightening anxiety and stress, everyone else is experiencing this too, and right now, it's okay not to be okay.

Interviewer: And especially your loved one, if they express that feeling, I think it's normal for us to say, "Oh, it's not going to be that bad," and dismiss it. Probably not do that right now.

Dr. Supiano: I think it is that bad right now. We need to acknowledge that and kind of give people that ability to be open about those feelings. With that, though, there are some tips that have been promoted to try to minimize the anxiety and stress.

One of them is, although we want people to be informed, minimizing the constant stream of bad news and anxiety-inducing news that you may be seeing on your television, through your social media, and other means. Take some stress breaks. Take care and attend to your wellness, which is another factor. And making sure that you're getting exercise. It's hard to do if you're sheltering in place at home, but getting some regular exercise every day, ideally now that the weather's improved to be outside, you're away from other people, getting sunshine, fresh air, but more importantly getting that exercise is a very important stress reducer and can really go a long way in helping with anxiety.

Make sure you're getting enough sleep. So sleep deprivation related to anxiety is going to feed on this even more. So making sure that you're getting restorative sleep. Relax, doing other activities that you enjoy, maybe not watching TV right before bed as an example, and then maintaining those connections with others are the things that would be recommended.

Interviewer: Yeah. You gave me some great ideas there of some questions next time I talk to people in my life. Just to make sure they're sleeping okay and make sure that they're getting their needs met and make sure that they're getting out and getting some exercise. So that's a great list. I love to ask the experts, you know, at the end of the interview. You're the expert, so like what's the one thing you would want somebody to take away after listening to us talk today?

Dr. Supiano: So I'll take two.

Interviewer: All right, you can.

Dr. Supiano: Just I'll do them quickly. So first, if you're over age 65, you're at high risk and be extremely vigilant about these precaution measures. Secondly, social distancing is not physical distancing. So maintain your physical distance but don't be socially isolated. And make sure to maintain those connections.

Interviewer: It's a conversation we're not used to having or starting. I'm talking about planning for end-of-life care, and if you are planning for end-of-life care because of a diagnosis with Alzheimer's or other sort of dementia, it becomes even more complicated whether it's for yourself, or whether it's a loved one that has that diagnosis.

So to help out with that process, we're talking to Kara Dassel. She's in the Gerontology Interdisciplinary Program in the University of Utah Health College of Nursing. And her research team has developed this thing called "The LEAD Guide," which stands for Life-Planning in Early Alzheimer's and Dementia. So everybody should have an end-of-life care plan. But from what I understand, if you have Alzheimer's or some sort of dementia, that end-of-life care plan is going to look a little different. Explain why that is.

Kara: There's more of a time crunch in a broader context within Alzheimer's disease or other types of dementia where there is a limited window where you're able to engage in your family member with dementia and learn about their preferences and wishes before they get too cognitively impaired where they're no longer able to have those conversations.

Interviewer: Wow. So after the diagnosis comes in and you find out that maybe a loved one or even yourself has dementia, how soon should that conversation start?

Kara: The earlier the better. It shows that you have better care outcomes as far as having your medical decisions match your preferences if you have those discussions and document it. You're less likely to be hospitalized if you don't want to be. You're less likely to be shuttled in between nursing homes and hospitals and rehab facilities. And it's a better outcome for the people making the decisions for you because they don't have the burden of trying to guess what mom would want.

Interviewer: When it comes to advanced care planning, I thought this was interesting. I tend to always think of just medical preferences, like this is what I want medically done or not done. But it goes beyond that. And "The LEAD Guide" is based on what you call value-based decisions. Explain what that means.

Kara: Yeah. So sometimes just checking a box of whether you want a ventilator or not doesn't give you the full context of end-of-life values and preferences. And in dementia, in particular, someone may be physically very healthy but lack decision-making abilities. And so you need to make decisions about if they need long-term care, is that going to happen in the home? Is it going to happen in assisted living, a nursing home? You needed to decide where their location of death is going to be, because with dementia people live on average 8 years after diagnosis, but they can live up to 20 years. And so there's a lot of care decisions and medical decisions that need to take place within that long death trajectory.

Interviewer: So this can be a tough discussion to have. So I guess I'm thinking from the perspective of maybe a family member wanting to bring it up after that diagnosis. Are there other reasons why it's just really important to have that discussion? Again, it's not a discussion we're used to having.

Kara: Right. Not a discussion you're used to having, and I think just knowing that your window is limited puts the time pressure on having these discussions within a context of progressive dementia. And I like to frame it with families as it is beneficial for the person with dementia and the family members to have this discussion for two reasons.

One, the person with dementia has the comfort and peace knowing that they were able to communicate what they want currently and then also what they want when they have advanced dementia. That might differ. They may want something different today versus five years from now when they're in a nursing home. And so being able to communicate that can bring a lot of peace and comfort to the individual.

And then also, family members can approach it as, "Do me a favor. I want to carry out your values and preferences, but I need to have this conversation with you in order to do that." And that would relieve a lot of burden or guilt or disagreements among family members. So it's really a service to the family to have this conversation.

Interviewer: I was surprised to see in the research that you and your team did to make this guide that, for some people, the emotional burden can last months or even years, the caregiver emotional burden.

Kara: Right. If you're in a situation where you really don't know what your husband or partner wants, or mom or dad and you have to, it's an acute situation in the hospital and you have to make a decision, you may question whether you made the right decision for years. There might be a lot of lingering guilt and stress of not knowing.

Interviewer: Yeah. So I'm looking through the guide here. What I really like about it is it seems pretty simple. And this is a point where I want to say this does not replace, if I understand correctly, an advanced directive. This is not an advanced directive. This works with.

Kara: Right. This is a supplemental guide that's not legally binding, but it provides additional information about a patient's values and preferences and some of those questions that are unique to dementia, like location of long-term care and preference for location of death.

Interviewer: It starts out with a little checklist of the end-of-life documentation that you should have, which is great because that can get confusing. So I like that. And then when you start getting into some of these end-of-life value questions, I found this fascinating because I think we put ourselves in the situation by not having these conversations. Like the very first question, I'm concerned about being a financial burden to my family or close friends. For my mom, like I would spend the money to continue to make her live if that's what she wanted. But then how often is there a disconnect that that's not actually what the person wants?

Kara: Right. And so a lot of these questions here about values, they help inform decisions. So if you know that your mom is really concerned about being a financial burden, then that will help you make decisions about her care in the future. And the same with being an emotional burden or a physical burden. You know, if your mom's really concerned about burdening you physically with day-to-day care tasks, then maybe that makes you feel a little more comfortable about placing her in a 24-hour skilled-care facility when that time comes, knowing that that's your mom's value.

Interviewer: Have you seen this actually in action?

Kara: Yes. So we have . . . A part of the process of developing this guide, we held multiple focus groups with healthy adults, caregivers of people with dementia, and people with early dementia themselves. And the feedback we got was very valuable about, "Wow, this is great. I hadn't thought about this." Or, "I never knew mom cared so much about not dying at home." So it really raised a lot of questions that they hadn't discussed before.

Interviewer: Yeah, that's fantastic. Is there anything else that we need to talk about this? I think this is such a fantastic tool, especially for somebody . . . You know, I know what we need to talk about. We need to talk about somebody with dementia, not only just the deterioration after the diagnosis, but end-of-life wishes tend to be different for patients that know that they're going to have dementia versus maybe somebody that knows that they're going to have cancer.

Kara: The dementia preferences were different from those other ones as far as not wanting medical treatment interventions in a situation of dementia versus cancer. And then, having a preference not necessarily to die at home, being more comfortable dying in a nursing home or at the hospital. And so a lot of the qualitative data that we got showed that the loss of sense of self, of independence, of memory really defines quality of life. And people didn't want to extend that type of life in general.

Interviewer: Understood. My last question is this is such a great tool. Is it something that anybody could use for planning end-of-life, even if it wasn't Alzheimer's or dementia? Because I know it was specifically designed for that, but could it be used for other cases as well?

Kara: Of course. So people may lose the ability to make decisions at the end of life for a variety of reasons, due to other medical conditions, head trauma. So you can use this guide to help with any sort of advanced care planning. It's just meant to facilitate the conversation.

updated: April 29, 2022
originally published: May 13, 2020