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Alzheimer’s Awareness: Symptoms, Stages, and Support
Amanda Harvan sheds light on the symptoms, stages and support of Alzheimer's.
Featured Speaker:
Amanda Harvan, CNP
Amanda Harvan is an advanced practice registered nurse and certified nurse practitioner who has been working with Summa Health Senior Services group for more than 11 years in a variety of sites of care including, home visits, nursing homes and the hospital. She has spent the last 5 years primarily doing inpatient geriatric consults. Her passion is helping older adults and their families navigate aging, acute illness and cognitive impairment. Transcription:
Alzheimer’s Awareness: Symptoms, Stages, and Support
Scott Webb: September is world Alzheimer's month. And in addition to raising awareness, removing the stigma from the disease remains a long-term goal. And joining us today to help us understand the disease and how people can live their best lives after diagnosis is Amanda Harvan. She's the Lead Advanced Practice Provider for Senior Services at Summa Health. This is Healthy Vitals of podcast from Summa Health. I'm Scott Webb. So Amanda, thanks so much for joining me. You know, we're primarily discussing Alzheimer's disease today, but I first like to have you explain dementia and how it's kind of the umbrella term for many things, including Alzheimer's?
Amanda Harvan: Dementia is what we call it. When a person has a memory problem, that's significant enough to cause some difficulty with daily function. That's not explained by some other medical condition, like being really depressed or having seizures or a vitamin deficiency. And there's about 90 different types of dementia, but Alzheimer's is the most common type of dementia.
Host: So yeah, I think you're right. Alzheimer's is the one that we're most familiar with and that's what we're discussing today. So let's just start up front here. How many Americans does Alzheimer's affect?
Amanda Harvan: So, it affects about 5 million people in the US, 80% of them are over the age of 75.
Host: Interesting. Okay. And obviously it can affect people who are younger, but generally speaking, the majority of people with Alzheimer's is over that age which is good to know. And I know there's a lot, but let's go through some of these at least. What are the early symptoms that somebody may be suffering from Alzheimer's disease?
Amanda Harvan: So, forgetfulness is usually the first thing that people notice that tends to be more noticeable on a day to day basis. People can have trouble for getting new information that they're trying to learn, forgetting important dates or events. They might have difficulty with repeating the same questions over and over or needing to rely more on memory AIDS or family members to remember things that they used to be able to manage on their own. But there are more symptoms that people can have besides just that obvious memory loss. Folks might have more challenge in managing numbers and problem solving, like difficulty following a recipe or keeping track of their money or paying bills on time. They might have difficulty completing a more familiar manual tasks, like maybe driving to a familiar location or difficulty managing their email or navigating through a computer program or remembering the rules of the game.
They can have some difficulty with what we call orientation, knowing when they are, keeping track of the dates and the seasons. They might have some difficulty understanding visual images and spatial relationships that they didn't have previously. They might have some difficulty with words in terms of finding the right word at the right time, or picking the right word to write in a writing task. They might be misplacing things. And then, you know, it's normal to periodically misplace something, but it becomes more concerning when a person isn't able to backtrack, retrace their steps and find that lost thing. They might have some changes in their judgment or the decision making. They might become more withdrawn from social or work activities. And family might notice changes in mood or personality.
Host: Yeah. And you mentioned family there and that's one of the things I wanted to ask you when we talk about diagnosis, you know, do people who suffer from Alzheimer's recognize their own symptoms or is it usually family members or friends who observed changes in their behavior?
Amanda Harvan: Good question. We see both, there are certainly people that are aware of changes that they're noticing in themselves that prompt them to, you know, talk to their doctor or their medical specialists about these concerns. But there are other people that have what we call a lack of insight, where they don't really perceive any problem at all in their memory or in their function. And it's family that are really bringing those concerns to light.
Host: And is one of the difficulties that family members and friends have when they observe changes in behavior is trying to convince people that, Hey, you know, there's been some changes and some differences, and maybe we want to reach out to your provider or primary or someone just to maybe kind of check under the hood a little bit if you will, is that one of the difficulties is getting people who may be suffering from dementia or it's specifically Alzheimer's to agree to be diagnosed?
Amanda Harvan: Definitely. I like to use the example that if you have a problem with your leg, your leg sends a signal up to your brain to say, you got a problem with your leg, but when you have a problem with your brain, it doesn't necessarily send you that signal to know that there's a problem. And that can cause a lot of stress and discord between patients and families. When families say, Hey, this is a problem. We have to do something about this. And the patient says, I don't know what you're talking about. Everything is fine. And we often will counsel families when they're trying to get a person in for an assessment to keep things pretty general, not in specific, they're going to test you for dementia. Mom. They're going to, you know, make you do a bunch of cognitive tests, but to say, I want you to have a checkup. I want to make sure we're doing everything we can to help you age the best way that you can. We want to help keep you as healthy and as happy and as independent as you can. So we, you know, we want to find out how we can help you.
Host: Yeah, definitely. And I imagine that one of the difficulties and I had some experience with a family member, an elderly family member, who would, you know, sort of cover for their behavior that when you would make note of, Oh, well, come on, you know this. So, you know, something like that, you know, their response would be to try to kind of cover a little bit and try to explain or justify why they couldn't remember something or why their behavior was different. Is that something you experience as well.
Amanda Harvan: Definitely. Yes. And often that's a Mark of really high intelligence. The smarter people are the better they're able to kind of cope and cover up some of those deficits. And we often see people who have been really kind of cruising along, making it work. And it's only when something major happens, like a change in their living situation or a major medical issue that family starts to look a little deeper or healthcare professionals start to look a little deeper and find, Ooh, there's more going on here that this person was able to compensate for.
Host: That's really interesting. And you're so right in that case, in the case of that family member, it was a big life change of moving from one state to be closer to family. And that's where we began to notice it more. And they, my aunt began to have more difficulty covering. Really interesting stuff. So let's go through the stages of Alzheimer's and kind of go through each one and how it progresses for people.
Amanda Harvan: People start off, even pre-clinically before people meet the criteria for dementia, they often have what we call mild cognitive impairment, which is some memory changes that are more than what's considered normal aging, but not enough to it's to the point where it's really interfering with that daily function, once things kind of cross over to causing some difficulties with more complex, higher level activities, like driving the car or managing a checkbook or managing a complex medication regimen. That's when people are in what we would call the mild stage of the disease process, they're still independent in doing their kind of basic everyday tasks, but the more complex stuff they're starting to have more difficulty with, they're needing some more help. Then from that mild stage people progress to moderate stage. And that's when they need, initially they need some help and some reminding for more basic everyday tasks. Like needing, reminding to take a bath or a shower or needing a reminder to put on clean clothes or what to do with dirty clothes or needing reminders to eat regularly.
And as people progress through that moderate stage, they begin to need more than just reminders. They need more queuing like, for a person taking a shower. Okay. Now you have to watch this. Now you watch that. Now you need the soap. And then as people progress to severe stage, they're requiring more around the clock care. They have more physical difficulties. They're needing more hands on help for those daily activities, not just queuing or reminders. And at the very end stage of Alzheimer's folks are no longer walking. They're not talking more than one or two words. They're no longer really smiling or holding their heads up on their own. And that's when folks become appropriate for say, hospice care. Then this is a process that doesn't happen over days and weeks. This is a process that occurs over months and years. The statistics say people to go from initial diagnosis to end stage of the disease process, usually takes somewhere between three and 10 years.
Host: Interesting. And I wanted to ask you about treatment and whether or not early diagnosis is any factor in prognosis for people. So in other words, if Alzheimer's is diagnosed earlier than later, does that have any effect on how healthy they can live? How successful they are in living with Alzheimer's?
Amanda Harvan: They do have some medications that have an FDA indication to treat Alzheimer's type dementia. They have a pretty modest benefit though. We don't have any medication that stops Alzheimer's or reverses Alzheimer's. They've done a number of studies looking at people in that preclinical stage before they develop dementia and to see if giving them dementia medications then prevents people from developing it over time. And that really hasn't panned out with the research. So far. The benefit of earlier diagnosis is giving patients and their families more support early on in terms of naming the disease process, managing any other symptoms that might come up, and then helping patients be more involved in planning for their future care. Because once people get into moderate to severe stage, so they're not able to participate in making decisions about where they want to live, what kind of care they want to have, how aggressive they want their medical care in general, diagnosing people in early stage disease helps them be able to work with their family to determine what are their goals, where do they want to live the rest of their life? What kind of support they want and how they're going to achieve that? Helps them have an opportunity to set up advanced directives like a healthcare power of attorney.
Host: When we talk about supports and resources out there for patients and family members, what are the best resources?
Amanda Harvan: So locally here, the Center for Senior Health is our outpatient assessment center, where we have a team of doctor and nurse practitioner and social worker who do cognitive evaluations to help give patients that diagnosis or make a diagnosis of Alzheimer's or a different type of dementia, or rule out Alzheimer's. And then provide ongoing support to the patient and family about how to manage symptoms. What's the most appropriate level of care, what resources are available in the community. Again, locally, our direction home or Area Agency on Aging can provide services in the home for eligible clients. So that's a wonderful resource for patients and families that are eligible to take advantage of what they have to offer. And then the Alzheimer's Association is a wonderful, both local and national resource for really all things, memory loss. They have a lot of very comprehensive education on their website, which is alz.org. And they have a one 800 number that's staffed 24 hours a day. And they're available to do one on one consultations with family members and patients about kind of working together to come up with a plan.
Host: That's great to know that there are support resources out there and in light of world Alzheimer's month, which is September as we wrap up here, anything else we can tell people whether that's family members and friends or potential or actual Alzheimer's patients, what else can we tell them about the disease, the prognosis, and basically living with Alzheimer's
Amanda Harvan: I like to tell patients that a diagnosis of Alzheimer's disease doesn't change who you are. You are still the same person. You are still valuable member of your family and your community. You're still the matriarch or the patriarch of your family. Even if you can't necessarily do all the things that you used to do, it doesn't change your role in the family. Most families that I see in certainly the providers in our office, our goal is to help people live as healthy and as happy and as independent as possible, but also to keep them safe. So we want to be able to work together to figure out what folks' goals are and how we can make that happen. This isn't something that changes people on a day to day basis. This is a long-term game and getting the appropriate diagnosis and support helps people live their best life and helps families manage folks in the most efficient and caring way to help them meet their goals.
Host: Yeah, definitely. And that's a great way to end, and I really appreciate your insight and your compassion here today, and what a great way of viewing this, of looking at this, that, you know, a diagnosis of Alzheimer's doesn't change who you are, and there will be changes of course, and they will go through those stages. But the diagnosis itself is an opportunity for them to advocate for their future and help them live their best lives. So that's really great. And thanks so much, Amanda, and you stay well. To reach the senior health center at Summa Health. Call (330) 375-4100 or visit summahealth.org/seniors to take a screening quiz and get connected for more information. And if you found this podcast helpful and informative, please share it on your social channels and check out the entire podcast library for additional topics of interest. This is Healthy Vitals, a podcast from Summa Health. I'm Scott Webb, stay well. And we'll talk again next time.
Alzheimer’s Awareness: Symptoms, Stages, and Support
Scott Webb: September is world Alzheimer's month. And in addition to raising awareness, removing the stigma from the disease remains a long-term goal. And joining us today to help us understand the disease and how people can live their best lives after diagnosis is Amanda Harvan. She's the Lead Advanced Practice Provider for Senior Services at Summa Health. This is Healthy Vitals of podcast from Summa Health. I'm Scott Webb. So Amanda, thanks so much for joining me. You know, we're primarily discussing Alzheimer's disease today, but I first like to have you explain dementia and how it's kind of the umbrella term for many things, including Alzheimer's?
Amanda Harvan: Dementia is what we call it. When a person has a memory problem, that's significant enough to cause some difficulty with daily function. That's not explained by some other medical condition, like being really depressed or having seizures or a vitamin deficiency. And there's about 90 different types of dementia, but Alzheimer's is the most common type of dementia.
Host: So yeah, I think you're right. Alzheimer's is the one that we're most familiar with and that's what we're discussing today. So let's just start up front here. How many Americans does Alzheimer's affect?
Amanda Harvan: So, it affects about 5 million people in the US, 80% of them are over the age of 75.
Host: Interesting. Okay. And obviously it can affect people who are younger, but generally speaking, the majority of people with Alzheimer's is over that age which is good to know. And I know there's a lot, but let's go through some of these at least. What are the early symptoms that somebody may be suffering from Alzheimer's disease?
Amanda Harvan: So, forgetfulness is usually the first thing that people notice that tends to be more noticeable on a day to day basis. People can have trouble for getting new information that they're trying to learn, forgetting important dates or events. They might have difficulty with repeating the same questions over and over or needing to rely more on memory AIDS or family members to remember things that they used to be able to manage on their own. But there are more symptoms that people can have besides just that obvious memory loss. Folks might have more challenge in managing numbers and problem solving, like difficulty following a recipe or keeping track of their money or paying bills on time. They might have difficulty completing a more familiar manual tasks, like maybe driving to a familiar location or difficulty managing their email or navigating through a computer program or remembering the rules of the game.
They can have some difficulty with what we call orientation, knowing when they are, keeping track of the dates and the seasons. They might have some difficulty understanding visual images and spatial relationships that they didn't have previously. They might have some difficulty with words in terms of finding the right word at the right time, or picking the right word to write in a writing task. They might be misplacing things. And then, you know, it's normal to periodically misplace something, but it becomes more concerning when a person isn't able to backtrack, retrace their steps and find that lost thing. They might have some changes in their judgment or the decision making. They might become more withdrawn from social or work activities. And family might notice changes in mood or personality.
Host: Yeah. And you mentioned family there and that's one of the things I wanted to ask you when we talk about diagnosis, you know, do people who suffer from Alzheimer's recognize their own symptoms or is it usually family members or friends who observed changes in their behavior?
Amanda Harvan: Good question. We see both, there are certainly people that are aware of changes that they're noticing in themselves that prompt them to, you know, talk to their doctor or their medical specialists about these concerns. But there are other people that have what we call a lack of insight, where they don't really perceive any problem at all in their memory or in their function. And it's family that are really bringing those concerns to light.
Host: And is one of the difficulties that family members and friends have when they observe changes in behavior is trying to convince people that, Hey, you know, there's been some changes and some differences, and maybe we want to reach out to your provider or primary or someone just to maybe kind of check under the hood a little bit if you will, is that one of the difficulties is getting people who may be suffering from dementia or it's specifically Alzheimer's to agree to be diagnosed?
Amanda Harvan: Definitely. I like to use the example that if you have a problem with your leg, your leg sends a signal up to your brain to say, you got a problem with your leg, but when you have a problem with your brain, it doesn't necessarily send you that signal to know that there's a problem. And that can cause a lot of stress and discord between patients and families. When families say, Hey, this is a problem. We have to do something about this. And the patient says, I don't know what you're talking about. Everything is fine. And we often will counsel families when they're trying to get a person in for an assessment to keep things pretty general, not in specific, they're going to test you for dementia. Mom. They're going to, you know, make you do a bunch of cognitive tests, but to say, I want you to have a checkup. I want to make sure we're doing everything we can to help you age the best way that you can. We want to help keep you as healthy and as happy and as independent as you can. So we, you know, we want to find out how we can help you.
Host: Yeah, definitely. And I imagine that one of the difficulties and I had some experience with a family member, an elderly family member, who would, you know, sort of cover for their behavior that when you would make note of, Oh, well, come on, you know this. So, you know, something like that, you know, their response would be to try to kind of cover a little bit and try to explain or justify why they couldn't remember something or why their behavior was different. Is that something you experience as well.
Amanda Harvan: Definitely. Yes. And often that's a Mark of really high intelligence. The smarter people are the better they're able to kind of cope and cover up some of those deficits. And we often see people who have been really kind of cruising along, making it work. And it's only when something major happens, like a change in their living situation or a major medical issue that family starts to look a little deeper or healthcare professionals start to look a little deeper and find, Ooh, there's more going on here that this person was able to compensate for.
Host: That's really interesting. And you're so right in that case, in the case of that family member, it was a big life change of moving from one state to be closer to family. And that's where we began to notice it more. And they, my aunt began to have more difficulty covering. Really interesting stuff. So let's go through the stages of Alzheimer's and kind of go through each one and how it progresses for people.
Amanda Harvan: People start off, even pre-clinically before people meet the criteria for dementia, they often have what we call mild cognitive impairment, which is some memory changes that are more than what's considered normal aging, but not enough to it's to the point where it's really interfering with that daily function, once things kind of cross over to causing some difficulties with more complex, higher level activities, like driving the car or managing a checkbook or managing a complex medication regimen. That's when people are in what we would call the mild stage of the disease process, they're still independent in doing their kind of basic everyday tasks, but the more complex stuff they're starting to have more difficulty with, they're needing some more help. Then from that mild stage people progress to moderate stage. And that's when they need, initially they need some help and some reminding for more basic everyday tasks. Like needing, reminding to take a bath or a shower or needing a reminder to put on clean clothes or what to do with dirty clothes or needing reminders to eat regularly.
And as people progress through that moderate stage, they begin to need more than just reminders. They need more queuing like, for a person taking a shower. Okay. Now you have to watch this. Now you watch that. Now you need the soap. And then as people progress to severe stage, they're requiring more around the clock care. They have more physical difficulties. They're needing more hands on help for those daily activities, not just queuing or reminders. And at the very end stage of Alzheimer's folks are no longer walking. They're not talking more than one or two words. They're no longer really smiling or holding their heads up on their own. And that's when folks become appropriate for say, hospice care. Then this is a process that doesn't happen over days and weeks. This is a process that occurs over months and years. The statistics say people to go from initial diagnosis to end stage of the disease process, usually takes somewhere between three and 10 years.
Host: Interesting. And I wanted to ask you about treatment and whether or not early diagnosis is any factor in prognosis for people. So in other words, if Alzheimer's is diagnosed earlier than later, does that have any effect on how healthy they can live? How successful they are in living with Alzheimer's?
Amanda Harvan: They do have some medications that have an FDA indication to treat Alzheimer's type dementia. They have a pretty modest benefit though. We don't have any medication that stops Alzheimer's or reverses Alzheimer's. They've done a number of studies looking at people in that preclinical stage before they develop dementia and to see if giving them dementia medications then prevents people from developing it over time. And that really hasn't panned out with the research. So far. The benefit of earlier diagnosis is giving patients and their families more support early on in terms of naming the disease process, managing any other symptoms that might come up, and then helping patients be more involved in planning for their future care. Because once people get into moderate to severe stage, so they're not able to participate in making decisions about where they want to live, what kind of care they want to have, how aggressive they want their medical care in general, diagnosing people in early stage disease helps them be able to work with their family to determine what are their goals, where do they want to live the rest of their life? What kind of support they want and how they're going to achieve that? Helps them have an opportunity to set up advanced directives like a healthcare power of attorney.
Host: When we talk about supports and resources out there for patients and family members, what are the best resources?
Amanda Harvan: So locally here, the Center for Senior Health is our outpatient assessment center, where we have a team of doctor and nurse practitioner and social worker who do cognitive evaluations to help give patients that diagnosis or make a diagnosis of Alzheimer's or a different type of dementia, or rule out Alzheimer's. And then provide ongoing support to the patient and family about how to manage symptoms. What's the most appropriate level of care, what resources are available in the community. Again, locally, our direction home or Area Agency on Aging can provide services in the home for eligible clients. So that's a wonderful resource for patients and families that are eligible to take advantage of what they have to offer. And then the Alzheimer's Association is a wonderful, both local and national resource for really all things, memory loss. They have a lot of very comprehensive education on their website, which is alz.org. And they have a one 800 number that's staffed 24 hours a day. And they're available to do one on one consultations with family members and patients about kind of working together to come up with a plan.
Host: That's great to know that there are support resources out there and in light of world Alzheimer's month, which is September as we wrap up here, anything else we can tell people whether that's family members and friends or potential or actual Alzheimer's patients, what else can we tell them about the disease, the prognosis, and basically living with Alzheimer's
Amanda Harvan: I like to tell patients that a diagnosis of Alzheimer's disease doesn't change who you are. You are still the same person. You are still valuable member of your family and your community. You're still the matriarch or the patriarch of your family. Even if you can't necessarily do all the things that you used to do, it doesn't change your role in the family. Most families that I see in certainly the providers in our office, our goal is to help people live as healthy and as happy and as independent as possible, but also to keep them safe. So we want to be able to work together to figure out what folks' goals are and how we can make that happen. This isn't something that changes people on a day to day basis. This is a long-term game and getting the appropriate diagnosis and support helps people live their best life and helps families manage folks in the most efficient and caring way to help them meet their goals.
Host: Yeah, definitely. And that's a great way to end, and I really appreciate your insight and your compassion here today, and what a great way of viewing this, of looking at this, that, you know, a diagnosis of Alzheimer's doesn't change who you are, and there will be changes of course, and they will go through those stages. But the diagnosis itself is an opportunity for them to advocate for their future and help them live their best lives. So that's really great. And thanks so much, Amanda, and you stay well. To reach the senior health center at Summa Health. Call (330) 375-4100 or visit summahealth.org/seniors to take a screening quiz and get connected for more information. And if you found this podcast helpful and informative, please share it on your social channels and check out the entire podcast library for additional topics of interest. This is Healthy Vitals, a podcast from Summa Health. I'm Scott Webb, stay well. And we'll talk again next time.