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How Dementia Changes Your Personality and Behaviors
James Ellison, MD, MPH discusses how dementia changes your personality and behaviors.
Featuring:
Dr. Ellison’s clinical specialties include the assessment and treatment of neurocognitive disorders and mood disorders in later life. His research interests have addressed cognitive and behavioral aspects of these conditions and he has served as a site Principal Investigator in multiple trials of new medications for the treatment of Alzheimer’s Disease. He is also the Editor in Chief of the Journal of Geriatric Psychiatry and Neurology and the author and/or editor of several books about psychiatry.
Dr. Ellison moved to Delaware in 2015 to become the first Swank Foundation Endowed Chair in Memory Care and Geriatrics. His objective in this role is to enhance the care of older adults with neurocognitive disorders in Delaware by increasing their access to state of the art diagnostic tools, clinical assessment and treatment approaches, caregiver support resources, and research trials. He is privileged to work as a geriatric psychiatrist embedded in an interdisciplinary consultation team that includes geriatricians, social workers, a neurologist, and a nurse practitioner devoted to this shared goal of treating people with mild to severe cognitive difficulties and related emotional and behavioral conditions. His program, the Swank Center for Memory Care and Geriatric Consultation, is Delaware’s only dedicated outpatient program serving this purpose.
Dr. Ellison is the proud father of two college-age young men who share his passion for community service. His partner, Kate, works as McLean Hospital’s fitness director in Belmont, MA. When not working, Dr. Ellison enjoys attending concerts, playing the violin, reading, and looking for time to keep fit
James Ellison, MD
Dr. Ellison was born in Minnesota and raised mostly in California, but higher education opportunities lured him to Boston, where he trained to be a psychiatrist at the Massachusetts General Hospital, Subsequently, he spent several decades working as a general and geriatric psychiatrist in several hospitals in or near Boston. He also received a Master of Public Health degree from the Harvard School of Public Health. Throughout his career, he has developed and led clinical and research programs while also promoting education of the public and of his professional peers. He has worked in diverse settings including emergency psychiatry services, inpatient and outpatient clinical settings, managed care, and private practice. Since 1999, he has focused on mental health issues of older adults.Dr. Ellison’s clinical specialties include the assessment and treatment of neurocognitive disorders and mood disorders in later life. His research interests have addressed cognitive and behavioral aspects of these conditions and he has served as a site Principal Investigator in multiple trials of new medications for the treatment of Alzheimer’s Disease. He is also the Editor in Chief of the Journal of Geriatric Psychiatry and Neurology and the author and/or editor of several books about psychiatry.
Dr. Ellison moved to Delaware in 2015 to become the first Swank Foundation Endowed Chair in Memory Care and Geriatrics. His objective in this role is to enhance the care of older adults with neurocognitive disorders in Delaware by increasing their access to state of the art diagnostic tools, clinical assessment and treatment approaches, caregiver support resources, and research trials. He is privileged to work as a geriatric psychiatrist embedded in an interdisciplinary consultation team that includes geriatricians, social workers, a neurologist, and a nurse practitioner devoted to this shared goal of treating people with mild to severe cognitive difficulties and related emotional and behavioral conditions. His program, the Swank Center for Memory Care and Geriatric Consultation, is Delaware’s only dedicated outpatient program serving this purpose.
Dr. Ellison is the proud father of two college-age young men who share his passion for community service. His partner, Kate, works as McLean Hospital’s fitness director in Belmont, MA. When not working, Dr. Ellison enjoys attending concerts, playing the violin, reading, and looking for time to keep fit
Transcription:
Melanie Cole: Welcome. This is Christiana Care's Podcast series. I'm Melanie Cole and today we're talking about how dementia changes your personality and behaviors. Our speakers in this podcast series represent the Swank Center for Memory Care and Geriatrics. Delaware's first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia or other neurocognitive disorders. Joining me is Dr. James Ellison. He's the Swank foundation endowed Chair in Memory Care and Geriatrics at Christiana Care. Dr. Ellison, it's a pleasure to have you join us today. Explain a little bit about changes in personality and behavior because so many people that develop dementia really get a change of personality, Alzheimer's as well. Please explain a little bit about this to us.
Dr. Ellison: Well, thank you Melanie for asking this important question. I think many people are interested in this topic. We think about dementia as a cognitive disorder that interferes with the capacity to live independently. It's true that memory and other neurocognitive functions are affected. Early on, we may see changes in memory, but we also see changes in personality in the majority of people who have dementia. Personality and behavior may be the first signs in certain kinds of dementia. And they become prominent issues in the cases of many other people with dementia. In fact, if we look back historically to the very first person that Alzheimer diagnosed with dementia and, who eventually turned out to have the plaques and tangles that we now call Alzheimer's disease. This was a woman who developed memory problems, but more prominently she had psychotic symptoms, hallucinations, agitation, and restlessness which required her to be cared for in the hospital.
So even in that first case, the importance of personality changes and behavioral symptoms were apparent. Now since that time, we've learned a lot about how behavior and personality change in the course of dementias, and specifically in the course of Alzheimer's disease. And we know that the most common change is simply apathy. Two thirds or more of people with dementia lose some of their initiative and become less interested in doing things that they used to do. People with apathy may not be so difficult to deal with. Although it can be confusing to determine whether a person is suffering from apathy or depression, and sometimes families are concerned that their relative is depressed when in fact loss of initiative and motivation are the issue. But more distressing for families are when changes take place in mood, in thinking or perception and inactivity. So if you like, I'll say a little about each of those types of changes.
When we think about mood, we might be talking about anxiety or depression or excitement, and each of those three things can change considerably in the course of dementia. Anxiety is a very common problem and depression affects as many as half of people with Alzheimer's disease, perhaps even more people with vascular cognitive impairment. When a person becomes depressed in the course of dementia, it may be in part because they are aware of the changes taking place in their function and their thinking. But we also think that there are neurochemical changes taking place as the brain becomes damaged by the disease process and neurotransmitter levels change. Depression can even be so severe that a person feels suicidal. And in some cases we also see changes that look more like mania, but we would call it secondary mania because it's caused by the dementia process. It's not caused by the usual bipolar disorder. There also can be changes in thinking and perception and they can include things like delusions, which are false beliefs.
For example, it's not uncommon for person with dementia to become convinced that the beloved relative who's caring for them is really an imposter who means them harm. And sometimes that can be quite dangerous. And people also can hallucinate. For example, a person whose hearing is so impaired that they have trouble having a conversation, can be convinced that they hear individuals in the next room talking and saying mean things about them. So these changes in perception are very common in the course of dementia. And then finally changes in activity. And those can go in either direction. Some people become less active and that ties in with the apathy. But some people become more active, agitated, restless. They might have to pace and they can even become aggressive or sexually inappropriate. Now granted, these kinds of extreme changes do not describe the majority of individuals with dementia. Many people with dementia are calm and easy to deal with, but the behaviors are common enough and agitation effects enough people with dementia that we really need to think about it, look for it, and find ways to intervene.
Host: Well, that was quite a description. Dr. Ellison, thank you so much. Now as you're talking about agitation, can some of these behaviors make home care difficult or even dangerous, and can they increase that caregiver stress? Is that something that you hear from caregivers that they're worried about this and what do you want them to know about it?
Dr. Ellison: Well, absolutely. This is such an important point for people to recognize that behavioral changes are much more stressful for a caregiver than simple memory loss. If somebody just needs reminders or orientation, that's not so difficult for a caregiver. But when a person becomes aggressive or agitated or severely depressed, their quality of life is so diminished, and the caregivers quality of life is so diminished, that that's where real problems develop in caring for somebody at home. So yes, it is a very great stress for caregivers when behavioral changes become severe.
Host: So give us some management strategies, behavioral approaches, validation for the caregiver, are they supposed to keep retelling the person? No, I am here to care for you. I love you. We're together. Or is that when it's time to consult a specialist?
Dr. Ellison: Well, Melanie, from what you're saying, I think you would be a great caregiver because telling a person over and over again how much you care about them and that you're there for them would be a very good message to give. Sometimes we see family members who feel like they can be very helpful by continually reorienting a family member to difficult circumstances. For example, an older man who has lost his wife to a medical illness, but he's affected by cognitive decline, might repeatedly ask where his wife is and repeatedly be told, she passed away. Then each time he hears that news, which he's forgotten, he would have to cope with it again and feel sad. So repeating and reorienting around difficult or sad information is not something that we think is helpful, but many people manage the behavioral issues with dementia through distraction and redirection, leading a person in a different direction where they feel happier. Some individuals who are caregivers feel less comfortable with the distraction and redirection approach, but have had better results arranging an environment that's supportive and nurturing and validating. And Naomi Fell, the social worker who developed the validation approach to therapy. It was a promulgator of this idea that you entered the patient's world. You stand in their shoes and understand how things look to them and you can validate their feelings without upsetting them more.
Host: That is so interesting as we conclude what research is going on that could help come up with that guidance that you've been discussing right here for those personality changes to help with caregivers and to help people make that decision. Dr. Ellison, between home care and looking for a place like the Swank Center for Memory Care and Geriatrics.
Dr. Ellison: Well, one of the interesting research studies that took place in this area just showed that educating family caregivers about dementia and about how to respond to a person with cognitive difficulties, prolonged the safe and comfortable time during which a person could be kept at home and cared for in that environment, which is what many people prefer. There's a lot of research that's going on about behavioral interventions, music therapy, supportive therapies of various different kinds, but also many medications are being tested for their ability to address the behavioral changes that occur in dementia. So I'm hoping that in the future we'll have a lot more tools than we currently have. But even at the Swank Center, we're exploring some behavioral approaches that can help people function better at home when they have behavioral disturbance.
Host: What a fascinating topic and something that's so many families go through. Dr. Ellison, thank you so much for joining us, and that wraps up this episode of Christiana Care's Swank Memory Care Podcast series. For an appointment at the Swank Center for Memory Care and Geriatrics. Delaware's first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia or other neurocognitive disorders, please call (302) 320-2620 to schedule an evaluation. And to learn more about programs and services, you can also visit ChristianaCare.org/SwankMemoryCare to get connected with one of our providers. Please remember to subscribe, rate, and review this podcast and all the other Christiana Care Podcasts. I'm Melanie Cole.
Melanie Cole: Welcome. This is Christiana Care's Podcast series. I'm Melanie Cole and today we're talking about how dementia changes your personality and behaviors. Our speakers in this podcast series represent the Swank Center for Memory Care and Geriatrics. Delaware's first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia or other neurocognitive disorders. Joining me is Dr. James Ellison. He's the Swank foundation endowed Chair in Memory Care and Geriatrics at Christiana Care. Dr. Ellison, it's a pleasure to have you join us today. Explain a little bit about changes in personality and behavior because so many people that develop dementia really get a change of personality, Alzheimer's as well. Please explain a little bit about this to us.
Dr. Ellison: Well, thank you Melanie for asking this important question. I think many people are interested in this topic. We think about dementia as a cognitive disorder that interferes with the capacity to live independently. It's true that memory and other neurocognitive functions are affected. Early on, we may see changes in memory, but we also see changes in personality in the majority of people who have dementia. Personality and behavior may be the first signs in certain kinds of dementia. And they become prominent issues in the cases of many other people with dementia. In fact, if we look back historically to the very first person that Alzheimer diagnosed with dementia and, who eventually turned out to have the plaques and tangles that we now call Alzheimer's disease. This was a woman who developed memory problems, but more prominently she had psychotic symptoms, hallucinations, agitation, and restlessness which required her to be cared for in the hospital.
So even in that first case, the importance of personality changes and behavioral symptoms were apparent. Now since that time, we've learned a lot about how behavior and personality change in the course of dementias, and specifically in the course of Alzheimer's disease. And we know that the most common change is simply apathy. Two thirds or more of people with dementia lose some of their initiative and become less interested in doing things that they used to do. People with apathy may not be so difficult to deal with. Although it can be confusing to determine whether a person is suffering from apathy or depression, and sometimes families are concerned that their relative is depressed when in fact loss of initiative and motivation are the issue. But more distressing for families are when changes take place in mood, in thinking or perception and inactivity. So if you like, I'll say a little about each of those types of changes.
When we think about mood, we might be talking about anxiety or depression or excitement, and each of those three things can change considerably in the course of dementia. Anxiety is a very common problem and depression affects as many as half of people with Alzheimer's disease, perhaps even more people with vascular cognitive impairment. When a person becomes depressed in the course of dementia, it may be in part because they are aware of the changes taking place in their function and their thinking. But we also think that there are neurochemical changes taking place as the brain becomes damaged by the disease process and neurotransmitter levels change. Depression can even be so severe that a person feels suicidal. And in some cases we also see changes that look more like mania, but we would call it secondary mania because it's caused by the dementia process. It's not caused by the usual bipolar disorder. There also can be changes in thinking and perception and they can include things like delusions, which are false beliefs.
For example, it's not uncommon for person with dementia to become convinced that the beloved relative who's caring for them is really an imposter who means them harm. And sometimes that can be quite dangerous. And people also can hallucinate. For example, a person whose hearing is so impaired that they have trouble having a conversation, can be convinced that they hear individuals in the next room talking and saying mean things about them. So these changes in perception are very common in the course of dementia. And then finally changes in activity. And those can go in either direction. Some people become less active and that ties in with the apathy. But some people become more active, agitated, restless. They might have to pace and they can even become aggressive or sexually inappropriate. Now granted, these kinds of extreme changes do not describe the majority of individuals with dementia. Many people with dementia are calm and easy to deal with, but the behaviors are common enough and agitation effects enough people with dementia that we really need to think about it, look for it, and find ways to intervene.
Host: Well, that was quite a description. Dr. Ellison, thank you so much. Now as you're talking about agitation, can some of these behaviors make home care difficult or even dangerous, and can they increase that caregiver stress? Is that something that you hear from caregivers that they're worried about this and what do you want them to know about it?
Dr. Ellison: Well, absolutely. This is such an important point for people to recognize that behavioral changes are much more stressful for a caregiver than simple memory loss. If somebody just needs reminders or orientation, that's not so difficult for a caregiver. But when a person becomes aggressive or agitated or severely depressed, their quality of life is so diminished, and the caregivers quality of life is so diminished, that that's where real problems develop in caring for somebody at home. So yes, it is a very great stress for caregivers when behavioral changes become severe.
Host: So give us some management strategies, behavioral approaches, validation for the caregiver, are they supposed to keep retelling the person? No, I am here to care for you. I love you. We're together. Or is that when it's time to consult a specialist?
Dr. Ellison: Well, Melanie, from what you're saying, I think you would be a great caregiver because telling a person over and over again how much you care about them and that you're there for them would be a very good message to give. Sometimes we see family members who feel like they can be very helpful by continually reorienting a family member to difficult circumstances. For example, an older man who has lost his wife to a medical illness, but he's affected by cognitive decline, might repeatedly ask where his wife is and repeatedly be told, she passed away. Then each time he hears that news, which he's forgotten, he would have to cope with it again and feel sad. So repeating and reorienting around difficult or sad information is not something that we think is helpful, but many people manage the behavioral issues with dementia through distraction and redirection, leading a person in a different direction where they feel happier. Some individuals who are caregivers feel less comfortable with the distraction and redirection approach, but have had better results arranging an environment that's supportive and nurturing and validating. And Naomi Fell, the social worker who developed the validation approach to therapy. It was a promulgator of this idea that you entered the patient's world. You stand in their shoes and understand how things look to them and you can validate their feelings without upsetting them more.
Host: That is so interesting as we conclude what research is going on that could help come up with that guidance that you've been discussing right here for those personality changes to help with caregivers and to help people make that decision. Dr. Ellison, between home care and looking for a place like the Swank Center for Memory Care and Geriatrics.
Dr. Ellison: Well, one of the interesting research studies that took place in this area just showed that educating family caregivers about dementia and about how to respond to a person with cognitive difficulties, prolonged the safe and comfortable time during which a person could be kept at home and cared for in that environment, which is what many people prefer. There's a lot of research that's going on about behavioral interventions, music therapy, supportive therapies of various different kinds, but also many medications are being tested for their ability to address the behavioral changes that occur in dementia. So I'm hoping that in the future we'll have a lot more tools than we currently have. But even at the Swank Center, we're exploring some behavioral approaches that can help people function better at home when they have behavioral disturbance.
Host: What a fascinating topic and something that's so many families go through. Dr. Ellison, thank you so much for joining us, and that wraps up this episode of Christiana Care's Swank Memory Care Podcast series. For an appointment at the Swank Center for Memory Care and Geriatrics. Delaware's first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia or other neurocognitive disorders, please call (302) 320-2620 to schedule an evaluation. And to learn more about programs and services, you can also visit ChristianaCare.org/SwankMemoryCare to get connected with one of our providers. Please remember to subscribe, rate, and review this podcast and all the other Christiana Care Podcasts. I'm Melanie Cole.