If you are a caregiver for someone suffering from Alzheimer's disease, you may face difficult challenges as you try to provide care and understand the behavior changes of the person you are caring for. Understanding the behavior of a person with Alzheimer's Disease can help lessen these difficulties.
Listen in as David Gill, MD shares tips on how to cope and the treatment options available with an Alzheimer's Diagnosis.
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Coping With an Alzheimer’s Diagnosis
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Learn more about Dr. David Gill
David Gill, MD
Dr. David Gill is a neurologist at Unity Rehabilitation & Neurology. He’s an expert in Alzheimer’s disease and dementia. He received his medical degree from University of Florida College of Medicine.Learn more about Dr. David Gill
Transcription:
Coping With an Alzheimer’s Diagnosis
Bill Klaproth (Host): If you are a caregiver for someone suffering from Alzheimer’s disease, you may face difficult challenges as you try to provide care and understand the behavior changes of the person you are caring for. Here to talk with us about coping with an Alzheimer’s diagnosis, is Dr. David Gill, Director of the Memory Center at Unity Rehabilitation and Neurology and a member of the staff at Rochester Regional Health. Dr. Gill, thank you for your time. It can be overwhelming to take care of a loved one with Alzheimer’s and that stress can take its toll. So, how can caregivers better cope when caring for someone with Alzheimer’s?
Dr. David Gill, MD (Guest): Well, that’s a good question. And thank you very much for having me on the show. We know that caring for somebody with Alzheimer’s disease or another dementia is really one of the most stressful things somebody can go through. Even more stressful than almost anything else in life and so addressing that stress is very important. There is no easy way to do that. And it really requires many different types of interventions all at once. And it is interesting when I talk to patient’s families, one thing I tell them is that oftentimes I’m not just caring for the patient with memory problems, but also the family because it is so stressful. And so many of the things that we aim to do for the person with memory problems is also meant to improve the stress for the caregiver. And so, part of it is making sure somebody has the correct diagnosis, making sure they come to a clinic that can make the diagnosis and part of it is making sure they are on the right medicines to improve not just memory but also behavior and any anxiety or depression they may have and then focusing interventions on several other things. One is education for the caregiver and another is support for the caregiver with the stress that they are going through and connecting them with resources in our area and the Alzheimer’s Association obviously, is one of those resources that we use quite a bit. It provides a lot of that support and so many of those things are very important.
Bill: Education and support for caregivers, absolutely needed. And I have got to believe one of the toughest things is managing the changes in communication. Any tips for that?
Dr. Gill: Yeah, several. And again, I think the first thing is insuring that the caregivers have appropriate education. We do a lot of that here in the clinic with our comprehensive approach, but obviously, we can’t answer every question or predict issues that may come up and so we always insure that they are aware of the caregiver training programs that are free in our area from the Alzheimer’s Association. And included in that program, that the association provides; is education about communication. So, some of the tips are to use an even tone, not one that is angry or fast, try to be at the person’s level instead of talking down to them, using a lot of nonverbal cues and clues to help them understand what you want and not doing multiple step requests. So instead of saying can you go upstairs and get the laundry and bring it back down and fold it many times saying I’m going to go upstairs and I will meet you upstairs and then tell them what the next step is. And so many of those different types of suggestions work, although sometimes there isn’t one that works for everybody and that is where support groups can be very helpful too where people come to the support group and say I’m having trouble with this aspect of communication and oftentimes, somebody else in the group who is a caregiver will say well here’s what I did that worked pretty well and sometimes it can be unconventional, but can work quite well and that is where the support groups are so helpful.
Bill: Well that’s really good advice breaking down the communication can make it easier and then the support groups are so important. One of the more dangerous things is when an Alzheimer’s patient wanders out of the house. Dr. Gill, can you share some thoughts on that?
Dr. Gill: Wandering is an issue for many although not necessarily all patients with Alzheimer’s disease or another cause of dementia. And one of the reasons it is an issue is in particular for Alzheimer’s Disease it affects memory and other parts of thinking, long before it affects somebody’s mobility and so they may get confused or make a poor decision and decide to leave the house or wherever it is they are staying and they can do that quite well because their physical ability is good and so it can be a challenge and often as one of the behaviors that comes up that really prompts someone to need a higher level of care, moving out of the house to somewhere else and so trying to manage that in the home is important. Sometimes wandering occurs because someone really just needs exercise or activity and one of the best ways to address that is to use the day programs in our area which are programs where somebody can go there with memory problems or sometimes even without but it works well for somebody with memory problems. They can stay for half a day or a whole day, sometimes all week. They can go and they are active physically, mentally and they are socially active there as well and that really provides an outlet for that energy that they have that they need to get rid of. And so, day programs are a key part of what we use to address some of the wandering. Other things that are important with wandering are deciding whether somebody needs 24-hour supervision and if somebody is wandering out of the house during the day and there is no one there, that often is the intervention that is needed, either them going to a day program or somebody coming into the home or them going to stay with somebody during the day and that by itself is often a good enough intervention that no medication changes are needed. Sometimes putting a lock on the door for at night when somebody is asleep and can’t watch them and then the other very important thing is that the Safe Return, medic alert bracelet that the Alzheimer’s Association has to offer that has information on it but also has a number to call if someone is found and is unable to say who they are or who should be called, so that we can get that person with their loved ones and get them back home.
Bill: And how do you handle things like rummaging through belongings, hiding things, repetitive things like opening and closing the shades. How do you handle those types of situations?
Dr. Gill: In terms of handling behaviors in general, it’s important to remember that the best approach is to use behavioral techniques first and not medication. So, we really try to limit medications as much as possible. It is also interesting to note how frustrating it is to have those repetitive behaviors including repetitive questions and people don’t realize how stressful it is for caregivers and loved ones to have the questions presented to them over and over and over and trying to find a way to deal with that is important. Some of it is actually finding time apart. So, we tell caregivers all the time, that finding time apart from your loved ones so you are not in the caregiving role all the time, not getting those questions all the time, it is important and again the day program serves an important role there as does going to stay with someone else, a loved one or a friend or having in-home help brought in so the caregiver can get out and do something else during that time. So, part of it is getting some time apart because that does allow less stress. Sometimes, we have to use medication changes if it is really a problem, although we do try hard to avoid that and then sometimes people need to move out of their home into a higher level of care, assisted living or one of the memory care units that really have the staff, trained staff to deal with some of those behaviors. But oftentimes, we don’t need to go down that road if we can change someone’s approach and get enough support and education for the caregiver.
Bill: And Dr. Gill, I’m thinking for a person caring for a spouse with Alzheimer’s, you know that person is watching their loved one kind of fade away almost grieving for their loss. Do you have any thoughts to share on that?
Dr. Gill: Several points I would make there. One is Alzheimer’s disease and other types of dementia are not diagnoses that people want to get and it can be quite disruptive and disturbing to have that diagnosis. On the other hand, we tell people when we are talking about this that just because someone has a diagnosis of Alzheimer’s disease; it doesn’t mean they can’t enjoy their life and oftentimes nothing changes for quite some time. So, I think that that’s important to note but it is true that with Alzheimer’s disease or other progressive disorders like that, people often go through a grieving process that is ongoing. Meaning every time somebody’s loved one loses the ability to do something, they can’t manage their finances anymore, they lose the ability to drive. Each time that happens, people often go through a grieving process and it is important to be aware of that and as much as possible, try and support the caregiver and loved one as they go through that and again, support groups are a great way to do that. In addition, the Alzheimer’s Association in the Finger Lakes Caregiving Institute make extensive use of caregiver counselors and we have used counselors in our clinic in the local area to serve that role to really help someone through that process.
Bill: And you just mentioned financial there. For someone caring for a parent that has Alzheimer’s; what about financial planning and money management even things like paying the bills?
Dr. Gill: That’s an important point and so the financial challenges that occur with somebody with Alzheimer’s disease or other dementia are important to talk about. So, just because somebody has Alzheimer’s disease, doesn’t mean they can’t manage their finances or they can’t drive. But it means that we need to try to figure out if they can and make decisions to ensure that we are prepared for the future. Sometimes it is as simple as putting things on autopay and they can then manage their finances fairly well, although at the same time it is important to plan for the future and ensure they have a Power of Attorney for financial decisions and a Healthcare Proxy for medical decisions. So, if they can’t make their own decisions, they have already selected someone who can and they trust to do that. In addition, we often recommend that someone meet with an elder care lawyer because many times there are things that should be done now to protect their finances for the future. They may want to look into long-term insurance – care insurance and determine whether or not a change in insurance and considering Medicaid would be a good idea. And those are things that are very complicated and sometimes need a lawyer to ensure they are doing it correctly. We also have a Care Navigator in our clinic who will go out and do home evaluations and part of that is assessing many of the things we just talked about and so having somebody like that on the team when you see a provider, is important to determine. Because if they have that type of person, many of those things can be addressed without having to go to a lawyer or making sure that you are prepared as part of the evaluation process.
Bill: Very important advice and steps to take. That you for sharing that with us Dr. Gill and why should someone choose Rochester Regional Health for their Alzheimer’s care and support?
Dr. Gill: I think for several reasons although I will note that I think that there are several different places to obtain care for somebody with Alzheimer’s disease or other dementia in our area and all are very good. I think the Rochester area provides excellent care. I would argue that the Rochester Regional Health Memory Center at Unity provides even better care for several reasons. One is we have two behavioral neurologists and we are the only board certified behavioral neurologists in upstate New York. In addition, we have a very comprehensive approach. We have four neuropsychologists who can do cognitive assessments, we have the Care Navigator who is trained as a social worker and we have a geriatrician who is trained in palliative care to address end of life decisions. In addition, to access to all the different therapies, imaging and lab testing including we are part of a nationwide study looking at the role of amyloid PET scans and we can, for some patients provide free access to amyloid PET scanning which is an up and coming type of test to be more accurate about a diagnosis. But I would say the most important reason despite having all these different aspects is how well we work together. Every patient gets a full assessment and then multiple providers discuss their case together which we know provides better care to ensure that they have the right diagnosis and a very comprehensive approach to treatment that isn’t just medications but all the other things that I discussed.
Bill: Coordination of care and a comprehensive approach to treatment. So important. Dr. Gill, thank you so much for your time today. For more information, you can go to rochesterregional.org. That’s rochesterregional.org. You are listening to Rock Your Health Radio with Rochester Regional Health. I’m Bill Klaproth, thanks for listening.
Coping With an Alzheimer’s Diagnosis
Bill Klaproth (Host): If you are a caregiver for someone suffering from Alzheimer’s disease, you may face difficult challenges as you try to provide care and understand the behavior changes of the person you are caring for. Here to talk with us about coping with an Alzheimer’s diagnosis, is Dr. David Gill, Director of the Memory Center at Unity Rehabilitation and Neurology and a member of the staff at Rochester Regional Health. Dr. Gill, thank you for your time. It can be overwhelming to take care of a loved one with Alzheimer’s and that stress can take its toll. So, how can caregivers better cope when caring for someone with Alzheimer’s?
Dr. David Gill, MD (Guest): Well, that’s a good question. And thank you very much for having me on the show. We know that caring for somebody with Alzheimer’s disease or another dementia is really one of the most stressful things somebody can go through. Even more stressful than almost anything else in life and so addressing that stress is very important. There is no easy way to do that. And it really requires many different types of interventions all at once. And it is interesting when I talk to patient’s families, one thing I tell them is that oftentimes I’m not just caring for the patient with memory problems, but also the family because it is so stressful. And so many of the things that we aim to do for the person with memory problems is also meant to improve the stress for the caregiver. And so, part of it is making sure somebody has the correct diagnosis, making sure they come to a clinic that can make the diagnosis and part of it is making sure they are on the right medicines to improve not just memory but also behavior and any anxiety or depression they may have and then focusing interventions on several other things. One is education for the caregiver and another is support for the caregiver with the stress that they are going through and connecting them with resources in our area and the Alzheimer’s Association obviously, is one of those resources that we use quite a bit. It provides a lot of that support and so many of those things are very important.
Bill: Education and support for caregivers, absolutely needed. And I have got to believe one of the toughest things is managing the changes in communication. Any tips for that?
Dr. Gill: Yeah, several. And again, I think the first thing is insuring that the caregivers have appropriate education. We do a lot of that here in the clinic with our comprehensive approach, but obviously, we can’t answer every question or predict issues that may come up and so we always insure that they are aware of the caregiver training programs that are free in our area from the Alzheimer’s Association. And included in that program, that the association provides; is education about communication. So, some of the tips are to use an even tone, not one that is angry or fast, try to be at the person’s level instead of talking down to them, using a lot of nonverbal cues and clues to help them understand what you want and not doing multiple step requests. So instead of saying can you go upstairs and get the laundry and bring it back down and fold it many times saying I’m going to go upstairs and I will meet you upstairs and then tell them what the next step is. And so many of those different types of suggestions work, although sometimes there isn’t one that works for everybody and that is where support groups can be very helpful too where people come to the support group and say I’m having trouble with this aspect of communication and oftentimes, somebody else in the group who is a caregiver will say well here’s what I did that worked pretty well and sometimes it can be unconventional, but can work quite well and that is where the support groups are so helpful.
Bill: Well that’s really good advice breaking down the communication can make it easier and then the support groups are so important. One of the more dangerous things is when an Alzheimer’s patient wanders out of the house. Dr. Gill, can you share some thoughts on that?
Dr. Gill: Wandering is an issue for many although not necessarily all patients with Alzheimer’s disease or another cause of dementia. And one of the reasons it is an issue is in particular for Alzheimer’s Disease it affects memory and other parts of thinking, long before it affects somebody’s mobility and so they may get confused or make a poor decision and decide to leave the house or wherever it is they are staying and they can do that quite well because their physical ability is good and so it can be a challenge and often as one of the behaviors that comes up that really prompts someone to need a higher level of care, moving out of the house to somewhere else and so trying to manage that in the home is important. Sometimes wandering occurs because someone really just needs exercise or activity and one of the best ways to address that is to use the day programs in our area which are programs where somebody can go there with memory problems or sometimes even without but it works well for somebody with memory problems. They can stay for half a day or a whole day, sometimes all week. They can go and they are active physically, mentally and they are socially active there as well and that really provides an outlet for that energy that they have that they need to get rid of. And so, day programs are a key part of what we use to address some of the wandering. Other things that are important with wandering are deciding whether somebody needs 24-hour supervision and if somebody is wandering out of the house during the day and there is no one there, that often is the intervention that is needed, either them going to a day program or somebody coming into the home or them going to stay with somebody during the day and that by itself is often a good enough intervention that no medication changes are needed. Sometimes putting a lock on the door for at night when somebody is asleep and can’t watch them and then the other very important thing is that the Safe Return, medic alert bracelet that the Alzheimer’s Association has to offer that has information on it but also has a number to call if someone is found and is unable to say who they are or who should be called, so that we can get that person with their loved ones and get them back home.
Bill: And how do you handle things like rummaging through belongings, hiding things, repetitive things like opening and closing the shades. How do you handle those types of situations?
Dr. Gill: In terms of handling behaviors in general, it’s important to remember that the best approach is to use behavioral techniques first and not medication. So, we really try to limit medications as much as possible. It is also interesting to note how frustrating it is to have those repetitive behaviors including repetitive questions and people don’t realize how stressful it is for caregivers and loved ones to have the questions presented to them over and over and over and trying to find a way to deal with that is important. Some of it is actually finding time apart. So, we tell caregivers all the time, that finding time apart from your loved ones so you are not in the caregiving role all the time, not getting those questions all the time, it is important and again the day program serves an important role there as does going to stay with someone else, a loved one or a friend or having in-home help brought in so the caregiver can get out and do something else during that time. So, part of it is getting some time apart because that does allow less stress. Sometimes, we have to use medication changes if it is really a problem, although we do try hard to avoid that and then sometimes people need to move out of their home into a higher level of care, assisted living or one of the memory care units that really have the staff, trained staff to deal with some of those behaviors. But oftentimes, we don’t need to go down that road if we can change someone’s approach and get enough support and education for the caregiver.
Bill: And Dr. Gill, I’m thinking for a person caring for a spouse with Alzheimer’s, you know that person is watching their loved one kind of fade away almost grieving for their loss. Do you have any thoughts to share on that?
Dr. Gill: Several points I would make there. One is Alzheimer’s disease and other types of dementia are not diagnoses that people want to get and it can be quite disruptive and disturbing to have that diagnosis. On the other hand, we tell people when we are talking about this that just because someone has a diagnosis of Alzheimer’s disease; it doesn’t mean they can’t enjoy their life and oftentimes nothing changes for quite some time. So, I think that that’s important to note but it is true that with Alzheimer’s disease or other progressive disorders like that, people often go through a grieving process that is ongoing. Meaning every time somebody’s loved one loses the ability to do something, they can’t manage their finances anymore, they lose the ability to drive. Each time that happens, people often go through a grieving process and it is important to be aware of that and as much as possible, try and support the caregiver and loved one as they go through that and again, support groups are a great way to do that. In addition, the Alzheimer’s Association in the Finger Lakes Caregiving Institute make extensive use of caregiver counselors and we have used counselors in our clinic in the local area to serve that role to really help someone through that process.
Bill: And you just mentioned financial there. For someone caring for a parent that has Alzheimer’s; what about financial planning and money management even things like paying the bills?
Dr. Gill: That’s an important point and so the financial challenges that occur with somebody with Alzheimer’s disease or other dementia are important to talk about. So, just because somebody has Alzheimer’s disease, doesn’t mean they can’t manage their finances or they can’t drive. But it means that we need to try to figure out if they can and make decisions to ensure that we are prepared for the future. Sometimes it is as simple as putting things on autopay and they can then manage their finances fairly well, although at the same time it is important to plan for the future and ensure they have a Power of Attorney for financial decisions and a Healthcare Proxy for medical decisions. So, if they can’t make their own decisions, they have already selected someone who can and they trust to do that. In addition, we often recommend that someone meet with an elder care lawyer because many times there are things that should be done now to protect their finances for the future. They may want to look into long-term insurance – care insurance and determine whether or not a change in insurance and considering Medicaid would be a good idea. And those are things that are very complicated and sometimes need a lawyer to ensure they are doing it correctly. We also have a Care Navigator in our clinic who will go out and do home evaluations and part of that is assessing many of the things we just talked about and so having somebody like that on the team when you see a provider, is important to determine. Because if they have that type of person, many of those things can be addressed without having to go to a lawyer or making sure that you are prepared as part of the evaluation process.
Bill: Very important advice and steps to take. That you for sharing that with us Dr. Gill and why should someone choose Rochester Regional Health for their Alzheimer’s care and support?
Dr. Gill: I think for several reasons although I will note that I think that there are several different places to obtain care for somebody with Alzheimer’s disease or other dementia in our area and all are very good. I think the Rochester area provides excellent care. I would argue that the Rochester Regional Health Memory Center at Unity provides even better care for several reasons. One is we have two behavioral neurologists and we are the only board certified behavioral neurologists in upstate New York. In addition, we have a very comprehensive approach. We have four neuropsychologists who can do cognitive assessments, we have the Care Navigator who is trained as a social worker and we have a geriatrician who is trained in palliative care to address end of life decisions. In addition, to access to all the different therapies, imaging and lab testing including we are part of a nationwide study looking at the role of amyloid PET scans and we can, for some patients provide free access to amyloid PET scanning which is an up and coming type of test to be more accurate about a diagnosis. But I would say the most important reason despite having all these different aspects is how well we work together. Every patient gets a full assessment and then multiple providers discuss their case together which we know provides better care to ensure that they have the right diagnosis and a very comprehensive approach to treatment that isn’t just medications but all the other things that I discussed.
Bill: Coordination of care and a comprehensive approach to treatment. So important. Dr. Gill, thank you so much for your time today. For more information, you can go to rochesterregional.org. That’s rochesterregional.org. You are listening to Rock Your Health Radio with Rochester Regional Health. I’m Bill Klaproth, thanks for listening.