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Interviewer: The current medical guidelines for systolic blood pressure are between 140 to 150 but new research indicates that reducing that to 120 can drastically reduce the chance of heart disease and death for adults 75 or older even if they are considered frail elderly. Dr. Mark Supiano is a geriatrician and the executive director of the University of Utah Center on Aging. This study, is this a new revelation that lower could be better with systolic blood pressure especially for elderly adults?

Dr. Supiano: Yes, Scott. This is exciting new information that came out of the systolic blood pressure intervention trial otherwise known as SPRINT. The trial ended late in 2015, earlier than anticipated because of these very dramatic benefits.

Interviewer: When it initially ended early, a lot of people speculated that that meant bad news but it actually meant quite the opposite.

Dr. Supiano: Yes and particularly for the 28% of the SPRINT subjects who are over the age of 75 there were some concerns, myself and other geriatricians, that the very intensive systolic blood pressure target of 120 might not be safe for older people. When we first got news of the trial ending early I first thought that it was possible that older people had more side effects or more injurious falls or other complications of the very low blood pressure and that was why the data safety monitoring board might have ended the study early. In fact, the results were just the opposite.

Interviewer: Like a revelation almost it seems like.

Dr. Supiano: It really was a surprise to be honest. Not so much as a surprise that the benefit but the surprise that the benefit was of this magnitude and that this occurred this early on on the trial.

Interviewer: So the current guidelines are between 140-150. This study points out that 120 can drastically reduce the chance of heart disease and death. How drastic are we talking?

Dr. Supiano: I'll focus on the population 75 and older as I said, this is 28% of the SPRINT cohort and in that group there was a 33% reduction in the cardiovascular outcomes. This is primarily a myocardial infarction or heart attack or congestive heart failure and stroke and then in addition overall reduction of 32% in mortality.

Interviewer: That's pretty substantial.

Dr. Supiano: It is. To be honest there are very few treatments I can recommend for people over the age 75 that can have this dramatic impact on those outcomes.

Interviewer: So if you're going to do one thing, according to the study so far, it would be try to get that blood pressure down to 120. Now, does that mean taking medication? Does that mean lifestyle changes?

Dr. Supiano: All of the above. On average, the people in the intensive group who are managed to a blood pressure of 120 or taking one additional anti-hyperintensive medication relative to people on the standard arm.

Interviewer: Of course your eyes looking at the risk benefits and something like this. So the benefits are tremendous. Are there risks?

Dr. Supiano: Absolutely. The good news was, and again focusing on those 75 and older population, our major concern would have been there were higher rates of injurious falls or what's called orthostatic blood pressure - a reduction of blood pressure when the people first stand up and get light headed or dizzy. First, there was no increase in serious adverse events between the intensive and the standard arm. Second, and again very reassuring, there was no high rate injurious falls in the intensive group, nor were there serious rates in the intensive group. The intensive group did have higher rates of low blood pressure, of electrolyte abnormalities, largely low sodium levels which was to be expected because of the medications that were used and some other adverse events. But when we weigh though over the benefit of preventing heart attack, stroke, heart failure and death, most believe that those benefits outweigh those risks.

Interviewer: That number of 120, can you go lower than that and get more benefits or is there a point where no?

Dr. Supiano: That would be another study. And it's important to point out the one on average for 75 and older group achieve of systolic blood pressure of just under 122. That meant that half the people had a systolic blood pressure above 122. So 120 maybe recommended as a target blood pressure. That doesn't mean everyone is going to get there. Nor does it mean that the benefit won't accrue if you don't get exactly to that target. I think the take home message is, it seems to be that the lower, the better.

Interviewer: So is this something that if somebody does fall under this group or somebody has a grandparent or parent that's in this group that you would recommend that they go to their doctor and say, "I would like to try for a blood pressure of 120"? Because this isn't the guideline yet.

Dr. Supiano: So important point, the guidelines are being written down or likely incorporate this new information but those guidelines won't be out until later this summer. Even with that guideline, like everything we do in medicine and particularly in geriatric medicine we have to be patient-centric. So we need to weigh someone's benefits and risk of their elevated blood pressure and incorporate that those at greater risk are likely to have greater benefit. So it needs to be an informed decision with patient who discussed the pros and cons and determine their level of interest in trying to achieve this lower target and recognize those benefits.

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Interviewer: Aging on a microscopic scale, up next on The Scope.

Announcer: Examining the latest research and telling you about the latest breakthroughs. The Science and Research Show is on The Scope.

Interviewer: I'm talking with Dr. Adam Hughes, Assistant Professor of Biochemistry at the University of Utah. Dr. Hughes, when I think of aging, I think about getting wrinkles, going gray, slowing down, but you think of aging on a different scale. How do you think about aging?

Dr. Hughes: We think about aging, I'd say, more at an organismal level or even more specifically than that, the cell biology level. Sort of looking at not how aging affects the whole organism, but how it affects specific structures within our cells within different tissues.

Interviewer: A lot of your research focuses on one component of the cell, an organelle called the mitochondria. First of all, can you orient us to the mitochondria? What does it do?

Dr. Hughes: Sure. Mitochondria, they're known as the powerhouse of the cell. Historically, they're drawn as kidney-bean-shaped structures you see in all the textbooks, but mitochondria do a lot of different things in metabolism. They're a double-membraned structure that produces lipids, they're involved in oxidative phosphorylation, they basically make energy for cells and also participate in a large number of metabolic reactions.

Interviewer: Studying the mitochondria is actually a whole field in and of itself. What's some of the evidence that mitochondria is involved in aging?

Dr. Hughes: Mitochondria has drawn a lot of attention, not only for its role in changes in mitochondrial function affecting how long an organism lives but it's also become very clear that as mitochondria become faulty with age, which happens for a number of different reasons in a number of contexts, this is also been linked to driving the development of a large number of age-associated disorders as well.

Interviewer: And as it turns out, there's quite an elaborate system for getting rid of or repairing mitochondria that does not function well. You've just published some research about this in the journal "eLife."

Dr. Hughes: I haven't explained much of what we've been doing. We've been using yeast as a model system to understand the aging process. So it's pretty cool that the single-celled eukaryote, the simplest one, and a lot of labs have been using it for a very long time to understand lifespan regulation type processes. And so our lab actually uses this organism in it does, in fact, age. A yeast cell, we measure aging by the number of times a cell can divide before it dies. Now, it happens about 30 times before a cell dies. And so in these old cells, it started several years ago when I was a postdoc at the hutch in Dan Gotchling's lab, we found it in old cells there was damaged or dysfunctional mitochondria.

So we decided to use this system to try to see what we can learn about how cells handle this, how they respond, what can they do. And we went into it, at the time, wondering if we could model pathways that were already known in mammals, one of the most prominent being the autophagy-dependent or self-eating pathways that had already been fairly well characterized. And so when we went into this, we set out to see in an old cell, do we see pieces of mitochondria? And we're visualizing all this on the microscope, being ripped off and degraded after they're damaged/

And we saw that there was, in fact, this going on in old yeast cells and so we initially thought it was similar to what had been observed already. And that's how we got into it. We didn't go into it looking for new pathways, but eventually it sort of, as we got more into the details of what this is going on, we realized they totally new type of quality control that we discovered that was different than anything else that had been described before.

Interviewer: So what is it? What did you find and how is it different from what was there, what you knew before?

Dr. Hughes: In general, in this field, it was always thought as a mitochondria became damaged that these systems aren't very smart for a lack of a better word, that they would go to the damaged mitochondria and just degrade the entire thing. Which seems a bit wasteful and so when we came into this we thought the same thing and we were using a protein on the mitochondria. We are monitoring it by microscopy and we could see that it was being eaten. But what we did that went beyond these original studies and other systems was there are about 1000 different proteins in the mitochondria. And we just started looking at other ones too. So most of the studies in mammalian cells had only looked at one or two and made conclusions.

And so we went on and looked at all mitochondrial proteins to see how they were all being degraded. What we discovered, based on this, and this is the big crux of this study, is that the pathway we've uncovered now is the concept and idea that mitochondria actually, under these situations when they're damaged, don't just get totally degraded as a whole. They can actually be broken down piece by piece. And what I mean by that is certain proteins can be basically selectively sorted out and removed from the mitochondria and degraded and the rest of it can be left intact.

Interviewer: Do you have any ideas yet of whether this pathway relates to aging or how it relates to aging?

Dr. Hughes: We got into it looking at aging, but we think it's actually going to have many applications in other systems, especially sort of metabolic-related disorders. We've been working from the standpoint of seeing the structure and it forms, it's sort of very descriptive. It forms, it gets released, it gets degraded and certain proteins go into it and certain ones don't. But understanding what the importance of it is and why it happens has been a much more difficult question. And we are starting to get at that.

We didn't get into a lot of it in this currently published paper, but some of our certain experiments are directed in the range of one thing that we did include here. And one big clue to us is the identity of the proteins that are actually degraded by the system. So again, the mitochondria has about 1000 proteins in yeast and when we looked at the proteins that are degraded by the system that we discovered, it's only about 10% of those proteins. And it turns out it's very selective for one particular group, which is a group of proteins called the mitochondrial nutrient carrier protein.

So the role of this group of proteins, there are about 30 of them, in the in the mitochondria, they basically facilitate the transport of all nutrients into and out of the mitochondria. So we're working from the fact that these are the main targets of this pathway and we think that giving us a big clue as to what might be its role. And so clearly, they're metabolite transporters. They're very heavily involved in all aspects of metabolism. And so we're testing the idea now, a hypothesis that this pathway may be very important for actually protecting mitochondria in times of changes in cellular metabolic state.

Interviewer: It's also kind of amazing to me that, especially in something as simple as a yeast, that there are still entire processes that we're still discovering.

Dr. Hughes: Yeah, I think that's definitely a really cool point. Sometimes, yeast in this day and age will get a bad rap. You hear all kinds of things that yeast research is done and things that we used to only be able to do in yeast, now we can do them in humans and other organisms. But what's sort of the big arena right now, I'd say, in the yeast field is cell biology. And it's been very limiting for a long time, the ability to look at all different proteins and all different things within the cell.

And what's really cool in the yeast field is that many, many years ago now, probably 10 years ago, a lab developed a collection of all yeast proteins tagged with a fluorescent protein, GFP. So it's about 6000 proteins in yeast. And so we have strains that contain every single one of them. And so there are a number of labs across the country, including ours, that are essentially using this collection to look at how the entire protium changes not in terms of levels, but in terms of localizations in cells.

And people are discovering a lot of new things that no one had ever noticed simply because we have the tools to do it now. And this is what's really nice in yeast. And we still don't have the ability to do this in mammalian systems yet. So I think the future will get there and we'll be able to start looking at these. But there's a lot of new, I'd say, cellular structures, cellular compartments that form under very particular conditions that people just hadn't seen before.

Announcer: Interesting, informative, all in the name of better health. This is The Scope Health Sciences Radio.

Dr. Miller: Could you have a pelvic fracture? We're going to talk about that next on Scope Radio.

Announcer: Access to our experts with in-depth information about the biggest health issues facing you today. The Specialists with Dr. Tom Miller is on The Scope.

Dr. Miller: Hi, I'm Dr. Tom Miller and I'm here with Dr. David Rothberg. He's an orthopedic surgeon and specializes in trauma care. David, how would one know if they had a pelvic fracture? Now I know that these are fractures that don't just occur spontaneously. Generally, people will have some type of trauma. Tell us a little bit about how that happens. How does one suffer a traumatic pelvic fracture?

Dr. Rothberg: There really are two separate patient populations that will have a pelvic fracture. One is the patient with a devastating life-threatening injury. These are not ones where you're questioning. These are patients that come in as a Level 1 trauma activation, but really a lot of these come in in an older patient population who have had a ground-level fall. They've tripped on the carpet, or over a dog, or something like this, and they can have pain anywhere from there groin, their abdomen, or low back, and that's when the work-up starts.

Dr. Miller: Is it sometimes confused with a hip fracture?

Dr. Rothberg: Commonly. The type of pain that you have with those two fractures is extremely similar, and we typically will figure out which one it is by taking x-rays.

Dr. Rothberg: Now a pelvic fracture, I guess depending on the type of patient, generally those are surgically repaired. They're fixed and treated, and then there's a recovery period. What about a pelvic fracture? How do you treat those? It seems like it would be kind of hard to cast a pelvic fracture.

Dr. Rothberg: Yeah, that's true.

Dr. Miller: It's like a rib. You can't cast ribs.

Dr. Rothberg: We don't cast pelvic fractures. What we're trying to figure out when we're working up some of the pelvic fractures is is the pelvis stable or unstable? And what that means is how much motion is in the pelvis when someone would walk.

Dr. Miller: And how do you determine that?

Dr. Rothberg: It's based on physical exam, the x-rays, and oftentimes a CT scan really looking at the pattern of the fracture, or how the bones are broken, and trying to determine the best course.

Dr. Miller: So in a pelvic fracture, would you operate on them from time to time?

Dr. Rothberg: Yeah, it's a very common operation for us. We do them almost daily, if not weekly. It really depends on the age and patient health status and mobility, and a lot to do with what they've broken.

Dr. Miller: Is the recovery time similar to a repaired hip fracture, or is it longer? Is there a difference in the type of recovery?

Dr. Rothberg: It's pretty much in the same ball park depending on the pattern of fracture they had. The surgery is a little easier to recover from. The surgery is not as invasive, but the ability to get back walking is about the same. It's tough in the early period, but we do expect that most people will get back to their daily life.

Dr. Miller: So the real key is if someone falls at home, especially an older person, and they have persistent pain they ought to be checked out and receive some type of radiologic study in order to determine at least initially if there's a fracture.

Dr. Rothberg: That's exactly right.

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Interviewer: Going to learn more about a brand new book called Autism Spectrum Disorder in Mid and Later Life. That's next on The Scope.

Announcer: Health tips, medical news, research and more for a happier, healthier life. From University of Utah Health Sciences, this is The Scope.

Interviewer: Scott Wright is a researcher at University of Utah and also the editor of the book Autism Spectrum Disorder in Mid and Later Life. Tell me about this book. Why did you decide the world needed this book?

Scott: I do think the world needs this book. My interest into autism issues with the aging intersect, the gerontological connection, came about when I was involved in a research project where I saw grandparents, grandparents as being very involved in the care of children, young adults on the autism spectrum, and realized that okay, here you go. Here's the grandparents yet again showing the kind of support and that safety net to help out their grandchildren. But think about this, their grandchild that has special needs and the grandparents were there providing that care. Well, from there, I realized that grandparent issues are also aging parent issues. Are there aging parents that are still supporting their adult child with disabilities, in this case perhaps with autism spectrum disorder, autism conditions? And yes, there are. In my discovery of the literature and the research, aging parents very much have this very, in a way, very concerned futuristic look about what is going to happen to their son or daughter who's an adult in their 30s, 40s, and 50s. What's going to happen to them when the aging parents, when they die? And then from there I came to appreciate that the amount of research, literature looking at this topic, it simply wasn't there. There was just this huge gap in looking at autism issues and aging, which literally stopped at adolescence and then picked up again a little bit in the geriatric years but nothing in between.

Interviewer: So kind of like a dumbbell. There's a lot young, a lot old, but mid to later life, nothing.

Scott: That's a great image to think about, very much like this barbell effect where you have a lot of interest, activity, services, programs, just general thinking that autism is a childhood issue and then it just goes away. Or that we're not paying attention to it once individuals transition, the transition years to adulthood. What happens then? Because autism is a life-long condition. What happens after adolescence? This is what this book does.

Interviewer: Is this book accessible for the lay public? I'm noticing a lot of references and I don't even know what these are called, oh, they're called references. At the end of the chapter it looks like an academic kind of book.

Scott: The original intent of this book was to create a publication of the latest evidence-based research. And indeed it has, I would say a good part of the book is academic and written for other professionals. But really this book is for a variety of different audiences - grandparents, aging parents, adults on the autism spectrum that are aging themselves. So this book has this great feel of being accessible to so many different groups and I think it's been accomplished. That goal has been accomplished with the final outcome.

Interviewer: It sounds like, so when you first brought up what interested you in it, I guess I just automatically assumed that parents with, somebody with a child that has autism are probably just going to be essentially parents their whole life. And that's what you're seeing is actually going on, but maybe that's not the best way.

Scott: That is a great question because for many parents, their son or daughter will reach adulthood and the programs and services that were there in the K-12 years, which are federally mandated, suddenly it appears that once their son or daughter reaches adulthood there is such a lack and a huge gap in services and programs. Parents become, in effect, the support system. When we look at individuals with autism, role models like Temple Grandin, she has some very interesting advice. And what she would say is a key issue during the transition years to adulthood, work. Work. Employment is such a big factor for a hallmark indicator of adulthood. But it would be my guess that the listening audience may not even know this statistic: 90% of individuals on the autism spectrum, they have the highest unemployment rate of any disability group. We're talking about 85-95% of this population with autism are unemployed. This is unacceptable in our society. Why is this happening? Work is a hallmark for adulthood and yet unemployment is a huge challenge. We need to address this.

Interviewer: So what were some of the things that you found out in the process of editing this book? And I will say that you did tell me that there were a lot of contributors to it. International contributors, not only people with MDs and PhDs but people on the spectrum as well. So what did you learn? What are some of the things that can be done in mid and later life that isn't being done?

Scott: What to glean from this book, with you're right, international authors, individuals, adults on the spectrum who are contributing the chapters, I think the two big themes that emerge out of the book that are important issues actually relate to the general population, to you or me and to everybody. That is when you think about to love and to work are two key factors to well-being and quality of life. For individuals on the autism spectrum, to work, which we would think of as almost like an automatic factor of being involved in our society, is a huge challenge for all sorts of different reasons. And then to love would be the issue of establishing relationships. More importantly, social networks and I think of this term social capital in terms of to love and having connections and social support. And then work to have a productive contribution to society and in return the rewards of that, this is what needs to be worked on, addressed for autism issues into adulthood and then into later life.

Interviewer: And what are they answers? Are they within the covers of this?

Scott: I think that the authors, yes. The authors that have been collected here, brought together in this book, they've done a great job with indicating what the answers are. I'm proud to say that, again, the researchers that are involved in this are talking about the data that they have collected but more importantly are the contributors who are adults on the autism spectrum, they have shared their story. And their story says we have learned a lot, we'd like to share it with everybody else, the right steps to live a fulfilling life.

Interviewer: And it sounds like it might offer some new perspective and new thoughts, too. Just even the perspective of, boy, a job is really important. Inclusion is really important but yet also is autonomy. That's important as well.

Scott: It is, so think about . . .

Interviewer: And these are all relatively new concepts to the thinking of the condition, is that correct?

Scott: It would be because, again, think about how we view autism, it used to be primarily a childhood/adolescent context. Now the context is when you're an adult on the autism spectrum the issue of community inclusion is huge. How can I sustain an independent living circumstance? Which to maybe many other people that's going to be an automatic transition, for individuals on the spectrum it's fraught with a variety of different challenges. So community inclusion is big. And then the employment issue, again, I can't think of one issue that would help so much in the lives of individuals on the autism spectrum and their families and our communities and our society would be meaningful work, and the opportunity to engage in and interact with meaningful work is one of the key issues in the landscape of autism today.

Interviewer: So it sounds like it's really kind of perhaps a guide into some uncharted waters.

Scott: I think that's really the best way to describe that. This book is pioneering, I think, in opening up new understanding of autism and aging issues.

Interviewer: What would you hope if a parent or a grandparent that had somebody with autism in their life purchased it? What would hope that they would be able to do after they have read it?

Scott: I think the key here is to realize that services, programs are becoming available in our society and in our communities are rapidly increasing. That's the good news. And that for the individuals who would read this book is that they should not, please, feel like that they're all alone, isolated in this particular context. That there is an increasing amount of services and programs in our communities. The key is to build the bridge between the individuals who need it and the individuals who can provide it. That's going to be the key factor.

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Interviewer: Five tips for family caregivers of advanced cancer patients. That's next on The Scope.

Announcer: Medical news and research from University Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: You find yourself in a situation where you have to provide care for a family member who has advanced cancer. It can be a very, very difficult time. And today we've got Dr. Lee Ellington. She's a clinical psychologist. She has five tips to help maybe make that process better not only for yourself but, more importantly, for the cancer patient as well. What is your first piece of advice for somebody that has found themselves in the situation?

Dr. Ellington: Number one is to communicate openly with the patient or other family members about the remaining days. It may be uncomfortable, but it's an important conversation to have.

Interviewer: And why is that conversation important? What does that do? What does that accomplish?

Dr. Ellington: It helps people prioritize what's important in their life, things that may have gone unsaid that they might have regrets about later. It helps open up some understanding and I think, in general, just talking about how we want to live in our final days needs to be an open conversation.

Interviewer: How about number two?

Dr. Ellington: If you have a patient with advanced cancer, then I think it would be important to learn about hospice before you need it. So explore hospice and what hospice offers and how not only will it help the patient that they're caring for but they may have many resources for the family. So hospice is a team approach. There's a chaplain, a social worker, a physician, nurse, hospice aids and other resources, and the unit of care is for the family.

Interviewer: So it's not so much necessarily always for the patient, but it's also for those that are caring for the patient in the family?

Dr. Ellington: They will encourage about the caregiver to take care of themselves, but sometimes the caregiver will say, "No, no, no. I can't do that now." But to be at their best, to really take care of the patient and themselves, they need to do both.

Interviewer: All right. So it's a good idea to have an idea what hospice can do, what kind of resources will offer you. What's number three?

Dr. Ellington: Consider yourself a hospice team member. So hospice is a team care approach and the family caregiver and the patient are part of that team. Caregivers have valuable information about the family, about the home life. They know a lot about the cancer and the disease and values and preferences and they should empower themselves to voice that and see themselves as a team member.

The fourth thing is to take care of themselves, self-care. So maintain their health the best that they can. Be sure they get the rest that they need and the resources to provide rested if that's necessary. So kind of pace themselves.

Interviewer: So don't abandon all the other things in your life. You still need to keep maybe exercise routines or give yourself some breaks away from caring for that patient. Again, I would imagine a lot of people are like, "No, I can't do that. That's selfish of me."

Dr. Ellington: Absolutely. That's the most common statement, I think. The other would be to seek support, whether from the hospice team, from families, from friends. People don't know what to do. They want to provide support to you, to both the patient and to the family and to take people up on that and ask for it, meals, a friend to talk to, a break. So seeking that support.

Interviewer: Yeah. And so often in that situation, you'll find people will say, "You know, if there's anything I can do," and then how often does that conversation just end right there? You're recommending that that family member should say, "You know what? It would really help if you could cook a potluck dinner for us tomorrow night or whatever."

Dr. Ellington: Absolutely.

Interviewer: Is there a big bottom-line takeaway when it comes to you're the caregiver, how can you care for yourself for the benefit of not only yourself and your loved one as well?

Dr. Ellington: Death does not just one person's experience. It's everyone's experience. There's loss, there are goodbyes. And so I think the takeaway is that to come together and decide how the family or the support ties want this to occur, want it to happen and be clear about that. So that means maybe taking a break so that they can be present for important conversations or can be present to provide the care they need. Or it may be taking a break to reflect on, "What just happened here?"

Interviewer: Do you find that that uncertainty of the person that is giving care not exactly knowing what the person that they're caring for wants can cause a lot of undue stress and that's why these conversations are important?

Dr. Ellington: Yes. People are afraid to talk about it and, certainly, the patient drives the course of the conversation. If they're not comfortable about talking about the final days and you've gently tried to make that occur, then you need to talk about with someone the final days and what you want and how you can make that happen for yourself and for the patient, but definitely, these conversations are difficult in our current culture.

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Dr. Jones: Caregiving, it's been called compassion in action. Sixty million Americans function as full or part-time caregivers for family members or people in their community. November is National Caregiver Month, and we honor those who, through love, loyalty, duty, or a combination of all three, give their heart, mind, and body to care for others. But how do caregivers care for themselves? This is Dr. Kirtly Jones from the Department of Obstetrics and Gynecology at University of Utah Health Care. And today we're talking about the health of caregivers on The Scope.

Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Dr. Jones: The economic value of informal and family caregiving in the U.S. is more than $300 billion a year, but there is also a cost to the caregivers. They've been called the invisible patient, in that their present in the doctor's office with the person for whom they care, but their responsibilities have a physical and mental cost. The risk factors associated with health problems and caregivers include, being a woman, the number hours of care provided, financial stress, cognitive impairment of the patient, a caregiver who lives with the patient, and a lack of choice in assuming the caregiver role. Today in the studio we're talking to a caregiver who is balancing her role as primary caregiver with her own health successfully, I might add. And I would like to welcome Kathleen to The Scope radio to talk about caregivers taking care of themselves. Welcome, Kathleen.

Kathleen: Thank you. I'm delighted to be here.

Dr. Jones: So help us understand a little bit about how long you've been the primary caregiver for a loved one in your home.

Kathleen: My husband was diagnosed with Alzheimer's about year after he retired. It's been nine years now that we've been dealing with this.

Dr. Jones: Did you plan for the long haul? Did you take it day-to-day, or a little bit of both? Did you think it was going to be this long?

Kathleen: No, I didn't think it was going to be this long. The prognosis, when you get it, is 3 to 20 years, and I looked in stunned shock at the doctor when he said that and he said, "But it won't be that long." I think probably because my husband was still considered early onset, because of his age. He was 63 at the time, but, no, I had figured really that he would probably be gone by now.

Dr. Jones: Some way, you've managed to stay alive cognitively intact, physically healthy. I mean, these are the things I'm assuming, but what have you learned over these years about taking care of yourself?

Kathleen: It's very, very important. There have been times when I thought I was doing fine and then suddenly realized that I really wasn't. What I do for myself is go hiking when I get a chance to. I belong to the book club, and I read voraciously. I read myself to sleep at night, partly because if I don't read before I go to bed my brain just starts thinking about all sorts of things. In this way, I can put myself in another world before I go to sleep. I indulge in chocolate as often as possible. I do volunteer work, and I'm lucky because I can still leave my husband home alone and I can take off and do volunteer work. I go to lunch with friends. At this point I can no longer take him to the theater or movies, so I go by myself.

Dr. Jones: In terms of his physical activities, can he dress and feed himself or is this something that you need to do for him?

Kathleen: He can still dress himself. If I don't put his clothes out for him, he will just put the same things on over and over again.

Dr. Jones: That sounds like me. That sounds like a great fashion idea.

Kathleen: But, yes, he can still dress himself, wash himself. Sometimes he needs a little encouragement, and he still eats by himself.

Dr. Jones: So you've been writing about your experiences. Is that helpful?

Kathleen: It has been extremely helpful. There's something about putting your thoughts in print that's very different from talking with someone casually, and you sort through your feelings and your emotions much more if you put it in print than you do when you're just speaking to someone. It's been extremely helpful for that. My goals with the blog were two-fold. Number one, to help me vent, but, number two, to help other people realize that we're all going through the same set of emotions at various times, and it's been very helpful.

Dr. Jones: I've certainly heard about writing as an exercise for people with PTSD and depression, but this is the first time I have actually thought of writing as a therapeutic choice for people who are locked in or choose to lock themselves into a caregiver role.

Kathleen: It's been extremely helpful. I noticed a change within the first few months in my feelings just because I had put them down and posted the blog. It was a very different feeling, so it's been extremely helpful.

Dr. Jones: Well, you mentioned talking to others. Can you expand on that little bit?

Kathleen: Yes. As I let friends know that my husband had Alzheimer's, I found other people out there who did. I mean, almost everybody knows someone, either in their direct family or a close friend, who has this disease or has some form of dementia. In my volunteer work I found several people who do, and we would start talking to each other. As we spoke together, we realized that we're going through some of the same things, different times maybe. This is a weird disease because everybody's a little bit different, but emotional horror is the same for all of us, and it helps.

Dr. Jones: You used the words "emotional horror." That's a strong word. I can see the use for writing. That's not something that you can just tell your children or tell someone casually, but that's a powerful sense that you might actually be able to write down or you can say in a small group of other caregivers.

Kathleen: Yes, and I do belong to a support group also for dementia.

Dr. Jones: What about respite care? Right now you can go for a walk and so keeping yourself physically fit and being able to go outside is really important. Sunshine on your face is critical, but what about respite care, if you need to go away longer than just a couple of hours?

Kathleen: There are facilities in the community where you can take whoever you're caring for, whether it's a spouse, a parent, whatever. You can leave them for a few hours or all day. Some people have insurance that will cover total expenses for that. The general cost, I think, is about $50 a day for those who don't have insurance that covers it. Its $50, that's a lot of money, but it beats a psychiatrist or the hospital bills if you succumb to caregiver-itis.

Dr. Jones: Right. What kind of ideas would you share? What do you think would help others?

Kathleen: The first thing is that I absolutely cannot dwell on this disease all the time. I would go completely bonkers if I did. You're in limbo for between 3 and 20 years, so you just cannot focus on the disease itself. So I locked that into a back corner of my mind and shut the door and go on with doing things I enjoy doing, which we've already discussed, chocolate being one of the most wonderful ones, chocolate, hiking, and getting together with friends.
The second, is guilt. So many people in my support group have said, "Well, I don't feel like I should take off by myself and go do something that's just for me because then I'm leaving my husband there by himself and I feel guilty about that." I lost the guilt bug a long, long time ago. You absolutely have to get out there and do things that are just for you that make you feel good, that you enjoy or you're not going to survive to take care of him. That's what you should feel guilty about.
I left my husband in respite care for a week recently and started to feel a little bit guilty as I was driving away, in spite of what I've just said. I turned on NPR and Diane Rehm was on, and she had someone from the Alzheimer's Association on who, as I turned it on, was saying Alzheimer's caregivers are six times more likely than the general public to develop Alzheimer's themselves because of the stress. I thought, "Okay, Kathleen, pat yourself on the back. You need this. You have to get out and go," and I did.

Dr. Jones: Well, you've really wrapped it up very nicely in a sense that, exercise, keeping yourself cognitively active, volunteering in another non-caregiving way, and chocolate. Great. So we are all caregivers to some degree or another, and, as I've been told, you cannot pull water from an empty well, so caregivers need to care for themselves. You mentioned that at this point you can leave your husband at home.

Kathleen: Yes.

Dr. Jones: The time may come when you can't do that.

Kathleen: Right.

Dr. Jones: Do you have plans for that, or are you just going to wait till that happens?

Kathleen: I'm peripherally aware of what's out there to use. The first thing that I will do when that happens is to take him to one of the places where you can leave them for a day for a few hours or all day so that I can escape and just do whatever I want to for that day. The second thing, which I'm already pursuing somewhat, I mentioned leaving him in respite care for a week, that, I think, is going to be a very good alternative to full-time care because it will allow me to escape completely for a week without the horrendous expense of full-time care. That would be my number two option. My two criteria for leaving him in full-time care would be if he gets violent or if he gets to the point where he needs physical help that I'm unable to give, if I have to lift him or something like that, that would be impossible. So those two things are my criteria.

Dr. Jones: Well, when I mentioned that Americans provide over $300 billion of care, if they had to have that care in a facility or have someone else hired to provide that care, that's what it would end up having cost. Full-time nursing home care for people who are at the end of their cognitive life is enormously expensive.

Kathleen: It is. At this point, it's the best-paying job I've ever had, and I don't see the cash but at least it's not going out.

Dr. Jones: That's a great way to put it.

Kathleen: Full-time care is anywhere from $6,000 to $8,000 a month. Medications would be extra.

Dr. Jones: Right, so it is very expensive.

Kathleen: It's very, very expensive.

Dr. Jones: Right. I tell people, from my own experience, once you add medications and doctor's visits it ends up being almost $100,000 a year.

Kathleen: Oh, yes.

Dr. Jones: $8,000 a month times 12 is 96.

Kathleen: Yeah.

Dr. Jones: So that's something that most people don't have insurance for.

Kathleen: Right.

Dr. Jones: Did you and your husband ever talk about long-term care insurance?

Kathleen: Long-term care insurance hadn't been around very long before he was diagnosed, and once he's diagnosed you can't get it.

Dr. Jones: Right.

Kathleen: So we talked about it briefly and then decided no. We had been in good health. Our parents had been in good health. We never anticipated this.

Dr. Jones: Well, that's a conversation that most of us don't want to have, but the realities are, with people living as long as we do, which is a blessing in so many ways, the fact that we may live beyond our cognitive capacities means that one out of three of us are going to spend time in some kind of health care facility.

Kathleen: Yes.

Dr. Jones: This is for younger people who can get long-term health insurance when it's still affordable.

Kathleen: Right.

Dr. Jones: But we never think it's going to be us.

Kathleen: Oh, you don't. Before you retire you never consider something like that.

Dr. Jones: Right. Well, as an aging nation, this is something we're going to have to pay attention to. As a member of the agers, I'm a Boomer, I want to live a long and productive life and I don't want to be a burden, but it's something that we as a nation are going to have to think about how we take care of our caretakers.

Kathleen: Yes.

Dr. Jones: What do you think is the most challenging thing in your role as a caregiver?

Kathleen: At this point in his development with the disease he's in stage six, out of the seven stages. I think the biggest challenge for me is that I get so terribly lonely. He has lost the ability to converse. He says three or four phrases over and over again, and I have to try to interpret those in context and sometimes that's impossible. He understands virtually nothing that I say, so I have no one to talk to and share with when we're at home together.

Dr. Jones: That's heartbreaking.

Kathleen: It is. It's very difficult. We've been married for 49 years, and I've lost the companion that I anticipated having. Now, that being said, I'm not going to do the pity party. I have friends and I have children that I talk to regularly and visit with regularly.

Dr. Jones: But the nights are long.

Kathleen: It's really hard.

Dr. Jones: Is it a challenge to care for someone for whom you now have to take care of?

Kathleen: Sometimes it really is. I know people who have said they just delighted in taking care of their spouse and were glad to do everything they could for them. I haven't been able to find the enjoyment in it. It gets very difficult. You're in limbo. You have no idea how long you're going to be doing this, and there are times when I just get frustrated and I resent being in this position.

Dr. Jones: And the person you are caring for is not the person that you fell in love with, that you raised your children with, that you had a career with, that you retired with.

Kathleen: No. My husband vanished many years ago, so I am taking care of a large two-year-old.

Dr. Jones: The National Family Caregiver support program, which is part of the National Administration on Aging, has a website that can direct you to ideas and local support. However, for all listeners, this Thanksgiving is the time to especially thank those who are providing compassion in action as caregivers. Thank you for joining us.

Announcer: We're your daily dose of science, conversation, medicine. This is The Scope. University of Utah Health Sciences Radio.