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Alzheimer disease: Ann C. Hurley, RN, DNSc, discusses Alzheimer disease.
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Alzheimer disease: Ann C. Hurley, RN, DNSc, discusses Alzheimer disease.
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Segment:0 .
>> I'm Joan Stephenson, Editor of JAMA's Medical News & Perspectives Section. Today I have the pleasure of talking with Dr. Anne Hurley about Alzheimer disease, a condition that affects millions of people worldwide, and a topic discussed in "Care at the Close of Life" in a chapter coauthored by today's guest. Welcome to the podcast, Anne, and please introduce yourself to our listeners. >> Well, thank you very much, Joan, and thank you for the opportunity to share information about Alzheimer's disease. I am a senior scientist at the Center for Nursing Excellence, Brigham and Women's Hospital, Boston, Mass.
And I had previously worked with Dr. Ladislav Volicer for many years at the Bedford VA Medical Center. Ladi is really the prime force behind linking hospice concepts, care of end of life or processes late-stage dementia and promoting comfort. So Ladi -- Dr. Ladislav Volicer, MD, PhD, is courtesy full professor School of Aging Studies, University of South Florida, Tampa, Florida; also, external professor for a medical faculty, Charles University Prague, Czech Republic, and adjunct associate Faculty of Nursing and Midwifery, University of Western Sydney, Australia.
And just one other thing, to my knowledge the 1986 paper that Ladi was the first author on in JAMA was the first publication that linked hospice concepts and care of persons with advanced dementia. >> That concept certainly has flowered in the ensuing years. >> Luckily. >> What is the prevalence of Alzheimer's disease in the United States and worldwide? >> Well, actually the prevalence is terrible. The Alzheimer's Association estimated that the 2013 prevalence was 5.1 million in our country, the sixth leading cause of death, that one in three seniors who die suffer from Alzheimer's disease or another progressive dementia.
And the cost is unfathomable. Unpaid family costs are estimated to be 216 billion. And federal costs under the Medicare and Medicaid programs are estimated to be about 203 billion. >> And that's annual costs? >> That was estimated for the year of 2013. And the projection for the year of 2050 is that there will be 15 million Americans with the cost to the nation estimated to be $1.2 trillion.
Worldwide the most recent figures are from a 2010 Lancer publication that used UN population estimates. And they estimate that there are 24.3 million people in 2010 worldwide with Alzheimer's disease; that there's a new case every 7 seconds, and that the number of people with Alzheimer's disease will double every 20 years to reach 81 million by the year 2040. >> That's a pretty astonishing figure. >> It's horrible. >> Why is it important to prepare early for a patient's future lack of decision-making capacity?
>> Well, if it's not done early, then you lose the moment. When not done early, the family, the surrogate decision-maker is faced with trying to figure out what the person would have wanted had they come forward with what they wanted; or to substitute their judgment about what they think is best for the person. So if you and I want our wishes known, we need to make them known now. And it's important for everybody to have a healthcare proxy. >> Can you please explain the four stages of the progression of Alzheimer's disease?
>> Certainly. In both the publication in JAMA and in the follow-up chapter, and many of our works, we divide Alzheimer's disease into four progressive, relentless stages. The first stage is mild and that's when the person is diagnosed. And it's, you know, impaired memory, personality changes, spatial disorientation. And there's a gradual loss of independence through each of the progressive stages.
So that's the mild stage. Second, the moderate stage, is characterized by aphasia, difficulty talking, apraxia, not being able to use implements correctly, confusion, agitation, and insomnia. Then more severe Alzheimer's disease is characterized by resistiveness to care, or rejection of care, incontinence, eating difficulties, and motor impairment. Now, I just want to say something about agitation and resistance.
Very often they're used by people interchangeably. But they are two distinct concepts. Resistiveness is invoked when a caregiver tries to provide care, that the person with the disease can't understand the rationale for, and tries to protect them self; as opposed to agitation, which occurs when a person is not being asked to cooperate with an event, and when the person has no known physical need that could be remedied that's causing agitation. So resistiveness is invoked, agitation is not.
And then in a terminal phase, the fourth phase, the person is bedfast, moot, has extreme dysphagia, has difficulty swallowing even their own secretions, and is prone to intercurrent infections. And it's usually a terminal pneumonia that is the immediate cause of death. So it declines, and there's no prediction for how it's going to decline since the disease can last from 2 to 20 years. But it's just relentless.
>> What are some of the benefits of patient and family interventions, such as counseling and support groups? >> Well, persons need psychosocial help. It is desperately needed. And for the individual that has early onset Alzheimer's disease, there are patient groups that persons can belong to. For the family members, it is just such a difficult thing for the family members to do, in terms of, you know, caregiving takes time, you have to know logistics, it's physical costs, financial costs, emotional and mental health costs, so that people need help and very often support groups to see someone else that's in your situation and what they did and, you know, to learn some tips from your peer group.
It's also important for supporting families when their care recipient has to be transferred to long-term care, that the family needs support in visiting to know -- or to get some help and how they can interact with your loved one who is getting progressively worse. >> How can clinicians assist families when it's time to transition the patient to a long-term care facility? >> I would say the first thing is to find the right place. So there are certain criteria that you need to look for and ask about.
So for my family member, characteristics of the ideal place would be an environment that looks good, and it looks safe, and there's no aversive smells, that provides both general and dementia healthcare that's appropriate. When I say "appropriate", that would not necessarily transfer someone into an acute care medical center for every little thing that happens, and that does provide quality dementia care. Attention to quality-of-life issues, you know, that which makes life worth living, programs and so forth.
And to have both capable and available staff where there's an interdisciplinary approach, so that the occupational therapist, and nurse, and nutritionist all get together and talk about what is best for the person. And it includes family involvement and support for the family. At the Bedford VA Medical Center what the clinical staff would say when the wife would need to bring the veteran in for a long-term care. And, you know, the wife was grieving, feeling terrible, you know, it's, "Just didn't do a good job," the staff would say.
"What do you mean? It takes us a team 24/7 to do what you did all by yourself alone in your home." So that's what I mean by "support of the family" when the transition comes. >> What makes feeding such an important component of nursing home care? >> Well, food is necessary for life, so if you don't eat, you die. There are many connotations of food that go beyond just physical food. Now, for instance, for holidays and when we're happy and we rejoice, we celebrate with a good meal.
And then there are also some times when we fast. You know, for instance, the major religions of the world have fasting holy days, Good Friday, Yom Kippur, Ramadan, so that food has both connotations as well as the physical need to provide life. And one can see by natural means versus a permanent feeding tube, feeding by natural means can go on through the very latest stages of Alzheimer's disease; just teeny amounts of food on a spoon, avoiding something that would choke, avoiding thin liquids, feeding what patients like.
They forget what they had the day before, so if they like something it's okay to give it over and over again. And just say no to feeding tubes. >> And what treatment measures, including palliative care, can or should be taken in late-stage dementia? >> Well, for late-stage dementia, I would say that there is no cure so that you need to focus on comfort. And so it's a focus on comfort, use hospice concepts which is called Namaste, and family support niche patients.
Now, comfort itself is complex. It's a multidimensional personal experience, and it can be a noun, a verb, process, an outcome. So it can be hard to get your hand around. In our work, we often use the absence of discomfort to substitute for presence of comfort. But Kathy Kolcaba has identified three senses of comfort relief from discomfort, that's the experience of the person who has had specific needs met; ease, the state of common contentment; and transcendence, being strengthened or invigorated, the state in which persons rise above their problems or challenges.
Now, the next one, hospice, is actually a number of things. It's a Medicare benefit, but it's also a philosophy of care that's important. And it's the philosophy that focuses on palliation of discomfort and pain and aversive symptoms, while attending to both the person and the family's emotional and spiritual needs. Then the Namaste Care is actually a program that Joyce Simard developed for nursing home persons with advanced dementia. And this seven-day-a-week program, residents receive meaningful activities through what's called the "loving touch approach" that's led by a nursing assistant.
And the term "Namaste" actually comes from Hindu, meaning to honor the spirit within. And it's the perfect name for such a program that's targeted to people who no longer can tell you who they are, who they were, and you're still there. And it provides a peaceful non-isolating environment through the day, as opposed to, you know, warehousing the person who's dying in the back section of the nursing home. The last is following up on family support with education about the dying process, because when persons with dementia die, they shut down.
They stop taking anything by mouth, and Judith Ahronheim in New York describes it as, "nature's anesthesia" that kicks in and persons die comfortably. And families need to be told that their loved one is going to be shutting down and, you know, just look at them, they're dying and they're comfortable. So that's what I have to say about that. >> Is there anything else you would like to tell our listeners about Alzheimer's disease? >> Yes, I would. One thing very near and dear to my heart, and that's research.
And I don't know who to credit this analogy but it's the analogy of polio and the iron lung. If the United States attacked polio the way it's attacking Alzheimer's disease, we'd be a nation with 2 million iron lungs and no vaccine. In the United States this past year a half a billion was allocated for research on Alzheimer's disease, yet Medicare and Medicaid spent 200 billion. And that doesn't even count the free care.
Something is radically wrong with that picture. So that's one thing, we need funding for research. The second is, we need to use what research we have. We need to use evidence informed practices in the care for persons with late-stage Alzheimer's disease. And we also need to conduct more research with advanced Alzheimer's disease. This year my colleague, Gladi [assumed spelling] and I are going to be having a book coming out, "Scales to Use When Studying Persons with Advanced Dementia", along with colleagues like [inaudible] Linda Heiman [assumed spelling], Cameron Camp, and Michael Scranger [assumed spelling].
So look for that. The next thing is the Alzheimer's Association, very important. Many programs help both the victims of dementia and professionals. The Alzheimer's Association provides person and family support, advocacy, education, and we are the largest private funder of research. So if somebody knows an individual with Alzheimer's disease, please ask their family to contact your local chapter. And in conclusion, I would like to thank the Department of Veterans Affairs.
And our country owes a great deal of thanks to them because of the GRECC program that was begun in the late 1970s. And "GRECC" means "Geriatric Research Education and Clinical Center". These centers were established to prepare for the onslaught of all the veterans that were going to be needing care; all the veterans from World War II. And the center's developed new knowledge for caring for the elderly and model programs that can be emulated by others. So it's at the Bedford GRECC where Dr. Volicer began the hospice approach to care for persons with advanced Alzheimer's disease.
And I'm happy to say that many of the concepts have been replicated, but many more need to be. >> Thank you, Anne, for this helpful snapshot of Alzheimer disease. Additional information about this topic is available in Chapter 12 of "Care at the Close of Life". This has been Joan Stephenson of JAMA, talking with Dr. Anne Hurley about Alzheimer disease for JAMAevidence.
Segment:0 .
>> I'm Joan Stephenson, Editor of JAMA's Medical News & Perspectives Section. Today I have the pleasure of talking with Dr. Anne Hurley about Alzheimer disease, a condition that affects millions of people worldwide, and a topic discussed in "Care at the Close of Life" in a chapter coauthored by today's guest. Welcome to the podcast, Anne, and please introduce yourself to our listeners. >> Well, thank you very much, Joan, and thank you for the opportunity to share information about Alzheimer's disease. I am a senior scientist at the Center for Nursing Excellence, Brigham and Women's Hospital, Boston, Mass.
And I had previously worked with Dr. Ladislav Volicer for many years at the Bedford VA Medical Center. Ladi is really the prime force behind linking hospice concepts, care of end of life or processes late-stage dementia and promoting comfort. So Ladi -- Dr. Ladislav Volicer, MD, PhD, is courtesy full professor School of Aging Studies, University of South Florida, Tampa, Florida; also, external professor for a medical faculty, Charles University Prague, Czech Republic, and adjunct associate Faculty of Nursing and Midwifery, University of Western Sydney, Australia.
And just one other thing, to my knowledge the 1986 paper that Ladi was the first author on in JAMA was the first publication that linked hospice concepts and care of persons with advanced dementia. >> That concept certainly has flowered in the ensuing years. >> Luckily. >> What is the prevalence of Alzheimer's disease in the United States and worldwide? >> Well, actually the prevalence is terrible. The Alzheimer's Association estimated that the 2013 prevalence was 5.1 million in our country, the sixth leading cause of death, that one in three seniors who die suffer from Alzheimer's disease or another progressive dementia.
And the cost is unfathomable. Unpaid family costs are estimated to be 216 billion. And federal costs under the Medicare and Medicaid programs are estimated to be about 203 billion. >> And that's annual costs? >> That was estimated for the year of 2013. And the projection for the year of 2050 is that there will be 15 million Americans with the cost to the nation estimated to be $1.2 trillion.
Worldwide the most recent figures are from a 2010 Lancer publication that used UN population estimates. And they estimate that there are 24.3 million people in 2010 worldwide with Alzheimer's disease; that there's a new case every 7 seconds, and that the number of people with Alzheimer's disease will double every 20 years to reach 81 million by the year 2040. >> That's a pretty astonishing figure. >> It's horrible. >> Why is it important to prepare early for a patient's future lack of decision-making capacity?
>> Well, if it's not done early, then you lose the moment. When not done early, the family, the surrogate decision-maker is faced with trying to figure out what the person would have wanted had they come forward with what they wanted; or to substitute their judgment about what they think is best for the person. So if you and I want our wishes known, we need to make them known now. And it's important for everybody to have a healthcare proxy. >> Can you please explain the four stages of the progression of Alzheimer's disease?
>> Certainly. In both the publication in JAMA and in the follow-up chapter, and many of our works, we divide Alzheimer's disease into four progressive, relentless stages. The first stage is mild and that's when the person is diagnosed. And it's, you know, impaired memory, personality changes, spatial disorientation. And there's a gradual loss of independence through each of the progressive stages.
So that's the mild stage. Second, the moderate stage, is characterized by aphasia, difficulty talking, apraxia, not being able to use implements correctly, confusion, agitation, and insomnia. Then more severe Alzheimer's disease is characterized by resistiveness to care, or rejection of care, incontinence, eating difficulties, and motor impairment. Now, I just want to say something about agitation and resistance.
Very often they're used by people interchangeably. But they are two distinct concepts. Resistiveness is invoked when a caregiver tries to provide care, that the person with the disease can't understand the rationale for, and tries to protect them self; as opposed to agitation, which occurs when a person is not being asked to cooperate with an event, and when the person has no known physical need that could be remedied that's causing agitation. So resistiveness is invoked, agitation is not.
And then in a terminal phase, the fourth phase, the person is bedfast, moot, has extreme dysphagia, has difficulty swallowing even their own secretions, and is prone to intercurrent infections. And it's usually a terminal pneumonia that is the immediate cause of death. So it declines, and there's no prediction for how it's going to decline since the disease can last from 2 to 20 years. But it's just relentless.
>> What are some of the benefits of patient and family interventions, such as counseling and support groups? >> Well, persons need psychosocial help. It is desperately needed. And for the individual that has early onset Alzheimer's disease, there are patient groups that persons can belong to. For the family members, it is just such a difficult thing for the family members to do, in terms of, you know, caregiving takes time, you have to know logistics, it's physical costs, financial costs, emotional and mental health costs, so that people need help and very often support groups to see someone else that's in your situation and what they did and, you know, to learn some tips from your peer group.
It's also important for supporting families when their care recipient has to be transferred to long-term care, that the family needs support in visiting to know -- or to get some help and how they can interact with your loved one who is getting progressively worse. >> How can clinicians assist families when it's time to transition the patient to a long-term care facility? >> I would say the first thing is to find the right place. So there are certain criteria that you need to look for and ask about.
So for my family member, characteristics of the ideal place would be an environment that looks good, and it looks safe, and there's no aversive smells, that provides both general and dementia healthcare that's appropriate. When I say "appropriate", that would not necessarily transfer someone into an acute care medical center for every little thing that happens, and that does provide quality dementia care. Attention to quality-of-life issues, you know, that which makes life worth living, programs and so forth.
And to have both capable and available staff where there's an interdisciplinary approach, so that the occupational therapist, and nurse, and nutritionist all get together and talk about what is best for the person. And it includes family involvement and support for the family. At the Bedford VA Medical Center what the clinical staff would say when the wife would need to bring the veteran in for a long-term care. And, you know, the wife was grieving, feeling terrible, you know, it's, "Just didn't do a good job," the staff would say.
"What do you mean? It takes us a team 24/7 to do what you did all by yourself alone in your home." So that's what I mean by "support of the family" when the transition comes. >> What makes feeding such an important component of nursing home care? >> Well, food is necessary for life, so if you don't eat, you die. There are many connotations of food that go beyond just physical food. Now, for instance, for holidays and when we're happy and we rejoice, we celebrate with a good meal.
And then there are also some times when we fast. You know, for instance, the major religions of the world have fasting holy days, Good Friday, Yom Kippur, Ramadan, so that food has both connotations as well as the physical need to provide life. And one can see by natural means versus a permanent feeding tube, feeding by natural means can go on through the very latest stages of Alzheimer's disease; just teeny amounts of food on a spoon, avoiding something that would choke, avoiding thin liquids, feeding what patients like.
They forget what they had the day before, so if they like something it's okay to give it over and over again. And just say no to feeding tubes. >> And what treatment measures, including palliative care, can or should be taken in late-stage dementia? >> Well, for late-stage dementia, I would say that there is no cure so that you need to focus on comfort. And so it's a focus on comfort, use hospice concepts which is called Namaste, and family support niche patients.
Now, comfort itself is complex. It's a multidimensional personal experience, and it can be a noun, a verb, process, an outcome. So it can be hard to get your hand around. In our work, we often use the absence of discomfort to substitute for presence of comfort. But Kathy Kolcaba has identified three senses of comfort relief from discomfort, that's the experience of the person who has had specific needs met; ease, the state of common contentment; and transcendence, being strengthened or invigorated, the state in which persons rise above their problems or challenges.
Now, the next one, hospice, is actually a number of things. It's a Medicare benefit, but it's also a philosophy of care that's important. And it's the philosophy that focuses on palliation of discomfort and pain and aversive symptoms, while attending to both the person and the family's emotional and spiritual needs. Then the Namaste Care is actually a program that Joyce Simard developed for nursing home persons with advanced dementia. And this seven-day-a-week program, residents receive meaningful activities through what's called the "loving touch approach" that's led by a nursing assistant.
And the term "Namaste" actually comes from Hindu, meaning to honor the spirit within. And it's the perfect name for such a program that's targeted to people who no longer can tell you who they are, who they were, and you're still there. And it provides a peaceful non-isolating environment through the day, as opposed to, you know, warehousing the person who's dying in the back section of the nursing home. The last is following up on family support with education about the dying process, because when persons with dementia die, they shut down.
They stop taking anything by mouth, and Judith Ahronheim in New York describes it as, "nature's anesthesia" that kicks in and persons die comfortably. And families need to be told that their loved one is going to be shutting down and, you know, just look at them, they're dying and they're comfortable. So that's what I have to say about that. >> Is there anything else you would like to tell our listeners about Alzheimer's disease? >> Yes, I would. One thing very near and dear to my heart, and that's research.
And I don't know who to credit this analogy but it's the analogy of polio and the iron lung. If the United States attacked polio the way it's attacking Alzheimer's disease, we'd be a nation with 2 million iron lungs and no vaccine. In the United States this past year a half a billion was allocated for research on Alzheimer's disease, yet Medicare and Medicaid spent 200 billion. And that doesn't even count the free care.
Something is radically wrong with that picture. So that's one thing, we need funding for research. The second is, we need to use what research we have. We need to use evidence informed practices in the care for persons with late-stage Alzheimer's disease. And we also need to conduct more research with advanced Alzheimer's disease. This year my colleague, Gladi [assumed spelling] and I are going to be having a book coming out, "Scales to Use When Studying Persons with Advanced Dementia", along with colleagues like [inaudible] Linda Heiman [assumed spelling], Cameron Camp, and Michael Scranger [assumed spelling].
So look for that. The next thing is the Alzheimer's Association, very important. Many programs help both the victims of dementia and professionals. The Alzheimer's Association provides person and family support, advocacy, education, and we are the largest private funder of research. So if somebody knows an individual with Alzheimer's disease, please ask their family to contact your local chapter. And in conclusion, I would like to thank the Department of Veterans Affairs.
And our country owes a great deal of thanks to them because of the GRECC program that was begun in the late 1970s. And "GRECC" means "Geriatric Research Education and Clinical Center". These centers were established to prepare for the onslaught of all the veterans that were going to be needing care; all the veterans from World War II. And the center's developed new knowledge for caring for the elderly and model programs that can be emulated by others. So it's at the Bedford GRECC where Dr. Volicer began the hospice approach to care for persons with advanced Alzheimer's disease.
And I'm happy to say that many of the concepts have been replicated, but many more need to be. >> Thank you, Anne, for this helpful snapshot of Alzheimer disease. Additional information about this topic is available in Chapter 12 of "Care at the Close of Life". This has been Joan Stephenson of JAMA, talking with Dr. Anne Hurley about Alzheimer disease for JAMAevidence.
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