PADRECC NATIONAL VANTS AUDIO CONFERENCE Caregiving & Psychosocial Issues in Parkinson’s Disease Elaine Lanier, RN MS September 10, 2009 Hello, everyone and good afternoon. So, you heard what I will be talking about. I am going to do a little background on Parkinson’s Disease for those of you who are not quite as familiar. So, we go to the first slide. Parkinson’s Disease is a chronic progressive neurological disease and it is characterized by symptoms of tremor, rigidity, bradykinesia and postural instability. The prevalence of Parkinson’s is projected to affect 1.3 million people by 2040, but only about 7% of Parkinson’s patients are admitted to long-term care facilities. Most of these patients are cared for by family members at home. On the next slide, who are family caregivers? Well, these family caregivers are those that provide a wide array of care to chronically ill or disabled relatives or friends in the home. So, it could be a wife, a husband, a daughter, son, grandchild, close friend, a neighbor. But the majority of these caregivers are woman, primarily the wives and these spousal caregivers usually are elderly and may have their own medical conditions, especially when we know that Parkinson’s affects more people as they reach up in years. So, their spouses are going to be as old as they are. On the next slide, continuing on who family caregivers are, these family caregivers provide 80% of chronic illness, homecare and services to people age 50 and above. They provide daily care, including medication management, symptom management, hands on care and emotional support. These family caregivers are extremely important and valuable to the care of the Parkinson’s patient. In fact, just economical value, in 2004, the estimated economic value of caregiving of these family caregivers was 306 billion dollars. That was a study presented by Arno and if you consider what is going on with our healthcare now, in light of President Obama’s new plan, this amount of money would greatly benefit to our healthcare budget and this, I am sure that the figure is even higher now, the economic value of the caregiver. The other important part of the value of these caregivers is their value to us as clinicians. On the next slide, I have asked our clinicians here at the San Francisco PADRECC and I imagine many of you share these same feelings, but I asked them to tell me what they see are the benefits that these family caregivers bring to the visit and bring to th Parkinson’s patient and some of the people said they enhance the communication between patient and clinician. They assist with adherence to the medication and the device regimes. Now, for those of you who are very familiar with Parkinson’s, we know that the medication regime for Parkinson’s patients, it is usually very complicated, multiple medications throughout the day. So, we need help, we can instruct the patient, but we really need the caregiver to help make sure that this is carried out and when it comes to device regimes, many of our patients have deep brain stimulation and they have a remote control device usually to manage some of the increased symptoms and stuff and so we have to instruct the caregivers then. They are such an important part of making sure that the patient gets the correct information because those caregivers can help us out. Caregivers help organize and coordinate the medical care. They really oversee the whole picture. Caregivers provide a more objective reporting of symptoms. This one I deal with a lot when I am trying to determine what symptoms a patient has. A lot of times, the patient is unable to clearly define what they are experiencing, but when I go to the caregiver, those caregivers have that objective view and they can say, oh, that’s hip dyskinesia and rather than what we hear from the patient sometimes is oh, I shake. Well, that could be dyskinesia, that could be the tremor and it would make a difference in how we would treat the patient, whether we would increase or decrease some of their Parkinson’s meds. The family caregivers can remind and reinforce the instructions that we give to patients, on following the orders, the family caregivers can be more reliable than the patient. Again, I often defer to the family caregiver when I am concerned about how the patient is responding to something or if they are following my instructions. So, they are more reliable and one of our nurses said that the family caregivers can be the voice of reason. Many times, we have patients, the Parkinson’s patients who have a lot of anxiety. We can tell them how to manage things and to maybe cut back on their ?? dosing, if they are taking too much, but it’s the patient’s caregiver that becomes the voice of reason and really makes sure that the patient gets the correct information and hears it. Then, on the next slide, this is a couple of quotes from two of our doctors. One of the doctors said that caregivers are famously active online and keep track of so much of what is going on in the media. Such as, support groups, chat rooms and the lay press. So, these family caregivers come to us and they have all these bright new ideas and they read this article and they saw this online and what are we doing about that? Well, it’s really helpful information and I will tell you, just for mer personally, some of these caregivers know more than I do and always exposing me to new information. The second quote here is from another doctor who said, these family caregivers are often our eyes and ears, being the first person that makes us aware of a new hot topic that people are talking about. Again, the Parkinson’s patients are often well educated, but the caregivers really got their feelers out and they are looking for information. Then, our last comment was from another nurse who said, these family caregivers are the resource generator. So, this nurse knows that when she goes to find out about a patient, if they are following the instructions, or have they done all of the correct pre-surgical information, etc., if they are about to have surgery, she knows she can rely on that family caregiver to make sure that these things get done. So, on the next slide, we as clinicians, what can we do for the Parkinson’s caregiver? There’s basically three things. The first thing is to include the caregiver in the treatment plan, education and all aspects of the patient’s care. I am sure that many of you do that, but I don’t think we can include them enough. The second is to understand the caregiver’s role. They have a very complicated role. They are such an integral part of the patient’s care. We need to understand what they are experiencing. And in that same line, we need to help with caregiver issues. So, understanding the family caregiver role in Parkinson’s, we need to understand that that caregiver helps with all ADL, they help with medication management and administration. They help with the household chores, they probably do all of the household chores. They are the financial management, they do the transportation, they handle emotional support and medical plan management. That’s quite a load for these family caregivers. They also have to cope with many of these non-motor symptoms, such as depression, anxiety, sleep disturbance, dysphagia, sexual dysfunction and we have been learning more and more about these non-motor symptoms that can be equally, if not more disturbing and troublesome than the motor symptoms. So, they affect the caregiver as well. So, the caregiver’s role is very demanding and it’s 24/7. So, these people work around the clock and the duties of the caregiver increase with the advancement of the Parkinson’s disease. So, on the next slide, I am illustrating some of the stresses of Parkinson’s caregiving and I kind of begin with the fact that when the patient is diagnosed, it’s a shock for the patient, but it’s also quite a shock for the family caregiver. Who in their right mind would ever plan for Parkinson’s Disease? Nobody would. But, suddenly the caregiver, their whole life has changed and this is the thing, they have to care for the patient and plan ahead. So, it’s very emotional and physically demanding. These Parkinson’s caregivers face increasing demands as the disease progresses and they have their own aging progress and physical decline. The stresses of Parkinson’s caregiving puts constraints on the social and family life and employment and finances. Just as an example, often the Parkinson’s patient has to quit or do an early retirement because of their Parkinson’s and this affects the family finances, but caregivers are often workers themselves. They are in the workforce and so they often have to either cut back to part-time or they have to quit their job to manage the caregiving duties. So, this is a double burden for the family finances. This leads to caregiver burden. Caregiver burden, basically, the definition is the degree of the caregiver’s awareness that their own health, socialization and financial situation is adversely affected due to the caregiving obligations. Caregiver research has shown that family caregivers often experience stress, as I mentioned, depression, compromised physical and psychological health and even premature mortality. We even have, there’s been a caregiver who did commit suicide within our PADRECC group and it’s very sad. I can’t say that this is directly related to their caregiving duties, but one can estimate or imagine how these caregiving responsibilities have affected somebody. Now, as I mentioned before, we can help the Parkinson’s caregiver. We have to be aware of their caregiver needs, we have to provide ongoing education, support to the patient and the caregiver. We can refer these caregivers to support groups for caregivers. Now, there may be a specific support group for the caregivers, but they can go to the patient’s support group, if it’s a Parkinson’s support group as well and likely still get some benefit. At the San Francisco VA here, we have just such a group, it meets once a month and we invite, we say it’s for the Parkinson’s support group, but it’s also for the family as well. And, often times, we have gotten the entire family, I remember on more than one occasion, a family of about five came and each family member down to the kids, did walk away with, hopefully, a new prospective on what is going on We can also refer the Parkinson’s caregiver to mental health services and counseling. One of the things I like to mention, knowing that I have been a caregiver myself, is sometimes, the caregiver is so involved with the caregiving and actually it’s not sometimes, it’s probably more often than not, the caregiver is in the middle of caregiving and they can’t see the forest through the trees. Their whole focus is on caring for that patient and they don’t think about their own needs and their own thoughts and feelings. It’s just like my job, my 24-hour, 7-day a week job is to take care of this patient. So, as clinicians, we can encourage and even give permission to the caregiver that it’s okay to get counseling, it’s okay to take care of yourself. We can also refer this Parkinson’s caregiver to social services and this doesn’t happen early enough. Whenever possible, make a consult to social services because then the caregiver can get help from social services, they know what can be provided within community services, they can get financial information and also end of life care. On the next slide, I encourage the Parkinson’s caregiver to, as I mentioned, to maintain their own health. This means making and keeping their own dental appointments, their own medical appointments and believe me, this is quite a struggle. When they are so booked with taking the patient to their doctor’s appointments, dental appointments, three, four, five, six, seven times a month, how are they going to fit in their own appointments? So, we really have to again give them permission and encourage them to take care of their own healthcare needs. Encourage the Parkinson’s caregiver to get breaks from their responsibilities. Now, of course, a weekend trip to Hawaii or something would be wonderful, but when in fact, mini breaks are probably more likely. And I mean mini down to five minutes. Some caregivers don’t feel they can walk away for more than five minutes. They can, but they don’t feel like it, so we have to encourage to even get out of the house. I had a caregiver in Colorado that I worked with and she would call me when she was just really exhausted and I would say, okay, once you are done on this phone call, you are going to get outside, you are going to walk away. It’s just being able to get outside of that caregiver responsibility, get a little bit better perspective or a different perspective or go outside. I had one caregiver who said she would go in the other room and have a chocolate break. So, whatever it takes, encourage the caregiver to get their breaks. Encourage the caregiver to get their sleep and as you all know, many of you know, that Parkinson’s causes a lot of problems with the sleep cycles. So, we know that if a Parkinson’s patient isn’t sleeping, their spouse is probably not sleeping as well. So, encourage that caregiver to get the sleep. If they need to get twin beds, if they need to sleep in another room, however it helps the caregiver, it will help the patient. We need to encourage the caregiver to keep social and spiritual appointments. If it’s a social activity, it’s nice if the caregiver can bring the patient, but it’s also okay if they can’t. They are entitled to go to a movie or go away. If they do include the patient, then likely it would be important to work around medication times. And last, but not least, keeping or developing a sense of humor is very helpful. Again, it gets you out of that mode of total responsibility. My mother suffered from Alzheimer’s Disease and she would come up with some of the most interesting statements and one of the ones I remember, I was telling her that we were having a family gathering and that my brother and sister were going to be there for a visit to see my mother for about a week. Both my brother and sister live out of town. I was telling her, Mom, Al’s going to be here, Diane is going to be here and I’m going to be here, all of us are going to be here next Wednesday, isn’t that great? And she came up with this and said, that’s a bonanza and it was just so funny and so cute and it was so nice to have just that little bit of humor in the midst of this difficult disease. So, sense of humor is very important. So, how to help the caregiver and how to help the caregiver get help. Again, we can encourage the caregiver to ask for help. It’s very hard to ask, but this can start with very small jobs. You can get help from family members, neighbors, friends, churches, synagogues and when I say small, I mean small. It could be can you go to the store and get a loaf of bread? Can you go pick up some milk? Can you go pick up Fred’s medications? A lot of the caregivers will say, well, I can’t ask my daughter, she has a family of four, she is so busy, she doesn’t have time. Why not? That daughter would be delighted to help, even if it’s for 30 minutes, once a week. I’ve heard excuses such as, well, my son’s so busy, he travels with his work all of the time, there’s no way he can help. Well, he can help remotely. Maybe he could look at finances and make some suggestions and look into some long-term care. But, people can help. Neighbors can help. You can hire the boy down the street to mow the lawn or take out the trash. All these things help the caregiver. By getting help, the caregiver can have fewer feelings of isolation, they can get those needed breaks and it gives the caregiver more confidence in their own ability to give that care. On the next slide, we are talking about advanced Parkinson’s caregiving. I’ll go through home health and respite care, care outside of the home and hospice care. So, home health and respite care, I know, there’s two programs that I am aware of, Home Health through the VA, there’s the Homemaker, Home Health Aid Program and then there’s this Aid in Attendance and Housebound and that’s through the VA Pension Program and on the slides I have listed the website for that. I kind of had to dig to find it and I was surprised to find it in pension, but these are specific programs provided through the VA and they can provide these home health services that go to the patient’s home and will help with chores such as laundry, doing dishes, they may or may not provide hands on care for the patient, likely they don’t, but they can help the caregiver, they can relieve the caregiver some of those extra duties. Then, home health, Medicare covers home health. Once the patients had a three-day stay in the hospital, they now are qualified to get nursing services, physical therapy, occupational therapy and nurse aid services. So, with the three-day stay, they qualify for home health. Respite care is another type of care where the patient is cared for outside of the home, typically in a nursing home. Now, specifically to our San Francisco, I know that it will provide for twelve days, twice a year at no cost to the caregiver. So, this is set up in advance for the patient to be admitted to the nursing home and it gives the caregiver a significant break. I will say that it’s hard for some of these caregivers to allow that care to happen, to allow somebody to fully care for the Parkinson’s patient. But, again, clinicians can encourage that they allow that to happen. That they, it’s okay, they are not shirking their duties, that they deserve a break and it will give both the patient and the caregiver a different prospective and the patient’s get the idea that wow, I have it pretty good at home. So, that’s not a bad thing either. Then we come on the next slide to care out of the home. This is a very difficult decision for both the Parkinson patient and the caregiver. It’s a difficult decision and what we can do as clinicians is help the Parkinson patient/caregiver know that it’s not a failure of their caregiving ability, but what’s required now is that the patient needs care above the level of what the caregiver can provide. And, as long as we focus on that perspective, I think we can encourage the caregiver to do this when it’s needed. So, I tell the caregivers that when they get to the point where they can no longer perform the physical tasks with lifting, pulling, turning, incontinence care, protection from falling, when they do fall, getting them up off of the floor, this is the time to consider the care out of the home. Equally important is the caregiver is unable or has difficulty handling the emotional problems, such as dementia, psychosis or sleep disturbance, this is equally an area that is the time to consider care out of the home. What I tell the caregivers is that they are not giving up their duty as caregiving, but the level and the type of care that they are providing changes. So, what they become is the patient advocate and the overseer of the care provided and where the patient goes. When it’s presented that way, I think it’s easier for the caregiver. So, options for care out of the home include continuing care, retirement community and these are a level of care that the patient and family buys into initially, before they actually need the care and it starts with the retirement community, then it goes to assisted living, skilled nursing care and probably hospice. It’s very expensive and it’s paid for upfront and I have heard that families will sell their house to get into this type of community care center type of care out of the home. Again, it’s very expensive and not that many people can afford it. Next level is the assisted living facilities and board and care. They provide unskilled, it has to be unskilled or it doesn’t qualify, care to the Parkinson patient and the difference between the assisted living and the board and care is that board and care is a smaller facility, usually maybe a house even and the number of patients they care for there is maybe six to eight people or less. Assisted living facilities are usually larger and they may or may not, and the ones to look for, are the ones that have a nurse there on the premises, a real RN nurse on the premises 24 hours a day. The last level, of course, is nursing home and here I imply the skilled nursing. But, any of these facilities, any of these places for out of care home need to be looked at thoroughly, they have to be visited more than once and you will find some ones that are very good, very bad and in between. But, the most important thing here is it is up to the caregiver and patient to feel comfortable with the level of care and the staffing that happens in these facilities to find the right one. It’s gotta be a match and it takes time and planning for that. So, on the next slide, I’m going to introduce hospice care and hospice basically is interdisplinary group of skilled professionals trained to support a Parkinson patient or whatever disease they have and their family through end of life and bereavement services. Hospice is a very good option and the one thing I want to stress here is that it be introduced before the caregiver is totally worn out. Now, hospice care, the services provided are a physician, a nurse, often times the nurse will be available 24 hours a day. There’s a social worker and a home health aid. They also may include physical occupational and speech therapy, depending on what the patient needs, as well as pastoral services. In addition, hospice can also provide durable medical equipment, such as wheelchairs, they can provide medical supplies. They also include medications and counseling. So, an additional benefit to this hospice care is that suddenly the expense of such care shifts, so that the caregiver doesn’t have to pay for this so much. The medications and the medical supplies are now covered under hospice. For me, when my mother went into hospice, this was quite a nice thing. We no longer had to pay all of this out of our pocket, it was coming and paid for through the hospice service and hospice services are covered by Medicare Part A. Also, hospice service can be provided wherever the patient is. So, if the patient is at home, hospice will go there. If the patient is in a nursing home or in assisted living, hospice will go there. Hospice will even go to a patient in the hospital. So, it really is a very beneficial service and I can’t stress it enough. It can be, what I call the lifesaver. The hard part here is that it requires the physician to make a determination that the Parkinson patients have six months or less to live. Now, this is difficult for the physician, as well as the caregiver. But, when the patients start advanced Parkinson’s and we are seeing these additional problems, such as advanced dementia, recurrent pneumonia, weight loss, urinary incontinence, infections and pain, that’s likely the time to start thinking about and recommending hospice. So, as I mentioned earlier, the most important thing I can say about hospice is please consider this before the caregiver is so exhausted, they are not benefiting. Unfortunately, there’s been too many cases of when hospice has been called in to help a patient and it’s two weeks before the patient dies. That’s too late. My mother was on hospice for eight months. The six months is not a hard and fast rule and there’s no crystal ball saying that the patient has six months left to live. We can just do the best estimate and the good news about hospice is they will come out and make their own assessment as to whether the patient is qualified for the hospice program. So, it’s more or less a recommendation on the part of physician and then the hospice program makes the determination. That six months just depends. There’s a renewal that has to be done and sometimes it’s every three months and sometimes it’s longer. But, the hospice program will make that evaluation and the good news is that if the patient gets better, they go off of hospice, but also they can go back on. So, the six-month rule is not such a hard and fast rule. So, keep that in mind. Then, on the next slide, I am just mentioning local and community resources for the caregiver. I have mentioned some of these already. The free to low cost, there’s the neighbors, friends, churches, synagogues, senior center, adult day health, meals on wheels, door-to-door van. All of these places provide minimum cost, if any, and can provide a wealth of help to the caregiver to the patient. There’s also fee based or in home care provided at a fee. I know some of my Parkinson’s patients that are hiring people now and they help with cooking, bathing, dressing, meal preparation. I wish these were not so expensive. A lot of times, they are expensive, but you really can decide the sort of the cost by what you feel is in helping the caregiver determine what is the most important care that they need help with. And, also that social worker, the patient needs to have a referral to social services so that the social worker can determine what expenses are covered by the health plan or the hospital social worker. It’s either the health plan or the hospital social worker can help with this. Next to last slide, I’ve got online resources. Some of these are local to San Francisco, but also, actually the Family Caregiver Alliance, the first one I have listed here, their home base is in San Francisco, but they are a national organization. The National Family Caregivers Association, The American Parkinson’s Disease Association, National Parkinson’s Association and even the Michael J. Fox Foundation. All of these websites, all of these organizations have information, education and resources for the caregiver and specifically for the Parkinson caregiver. So, when in doubt, you can always go to the email. My recommendation at the end of this talk is that we as clinicians can help the caregiver who helps our patient. So, keep in mind we need to encourage the caregiver to take care of their own medical needs. We need to encourage that caregiver to take breaks from their caregiving responsibilities and we need to understand what the caregivers are going through. So, if we help the caregivers with this, they help our patients and I hope the final result is this last slide, that there’s a happy patient and caregiver and they are going to work on this together. Thank you. Great, thanks Elaine. So, right now we are going to open up the lines for questions, so just hold on one second while we take it off of lecture mode and we will be right back in a couple of seconds. Thank you. So, while they are setting that up, I am just going to wrap up the closing remarks. Basically, I just wanted to remind you again to complete the registration and evaluation process and that has to be done by September 24th to get credit for attending this audio conference. Again, that’s in about two weeks. Also, another announcement is that the next PADRECC EES sponsored session will be November 12, 2009 and the topic presented by Marian Evot, Dr. Marian Evot is vitamin D, nutrients, supplements and Parkinson’s Disease. Again, that’s November 12th, coming up in two months. All right and so obviously I want to thank everybody for listening today and your interest in this topic. So, is everybody there now? Are the lines open? Maybe not yet? Okay, we will give it another minute or two. Okay, just checking again, is anybody there yet? Are you able to talk through to us? Maybe not yet? Nobody has any questions? Maybe we will try calling the operator again. Hold on one second. Okay, it seems like I think we are hearing some sound now. Can everybody hear us now? Yes. So, like I said, I was just going to open up the lines to a few questions. So, does anyone have a questions. Yes, this is Naomi Nelson from the Houston PADRECC, hi, thank you Elaine for your fine presentation. Do you have any thought for the rest of us on the benefits of caregiver alone support groups or combining the caregivers with the patients? I make a fair amount of resistance when I try and separate them and I just kind of wondered if you had any wisdom on that? Hi Naomi. That’s a great question. I really haven’t had the experience of separating them. Our group that meets has them included and it seems that there’s a pretty good balance and so I don’t have the experience of separating them, but I can also understand where you might not want to be. There’s times you would want to be separated and times that you wouldn’t want to be. So, that would be hard to do a group that does one or the other. So, that’s a good question. One thing I thought of is intermittently, maybe twice a year, have one just for the caregivers and then one just for the patients. You hate the break up the group and I always let the group decide what they want to do. Everything is good. If they don’t want to do it, I don’t, that’s fine. We initially had a support group just for caregivers and I think it was our time of day that we had it, but it would giving the caregiver the benefit of blowing off steam and talking about the frustrations a little more openly than if the patient was there. Right. So, I do see advantages and it might just, again, we can encourage, but you might have the right idea, is not to have one each time, but maybe specific times during the year. Okay, thank you. Hi, this is Lynn again from Richmond. Hi Lynn. That’s something nice to have a little conversation about. One of the things we do here in Richmond, we do try and separate the group and having a room that has a divider is one way to be able to make that happen. It’s worked fairly well here. Our two-hour support group meeting will have a speaker that addresses the entire group together and then we are able to pull the divider and so, the patient group on one side of the room and the caregiver group on the other side. And so, sometimes, we aim for every month. Some months the speaker talks longer and there’s more discussion on that topic and we don’t get to it, but the caregivers really love it when we are able to make that split group happen. Now, it does require some more manpower, of course, so that you have a facilitator with the patient group and one with the caregiver group. But, I know they really appreciate it, even if they are on two different sides of the room divider. That’s a great idea. The other thing that I just wanted to share with everyone else out there, November is National Caregiver Month and many of the VA’s are doing something a little special for caregivers for the month of November. I am on a planning committee with the group and we are just, it will be the first year we are doing it here. It sounds like it is more going to be some exhibits and so forth for about three or four hours open to visitors at the VA that day to go from booth to booth and learn about some resources that they might not know about before, but also is a way to show our appreciation to them for what they do, caring for our Veterans. Very nice. So, yeah, ask around and see if something like that is happening at your VA’s. Well, we actually had, I think it was two years ago, we had one very large seminar and we also did a different PADRECC, it was this huge conference that we had about two years ago, strictly for caregivers. We did invite the patients, of course, but it was the emphasis was all on caregivers. Also, Lynn I really liked your suggestions, sort of these break out sessions because that brings the patient and the caregiver together, they start together it sounds like and then they have the break out, where they have the room divider, so that they have their time separate, but they kind of come together and they go home together. So, that’s a great suggestion. So, thank you for that. You are welcome. Are there any more questions? So, I would just to like to thank everyone again for listening, for your questions and obviously, thank you Elaine. We will be in contact soon. Bye bye. END OF CONFERENCE. PADRECC National Vants Audio Conference Caregiving & Psychosocial Issues in Parkinson’s Disease Elaine Lanier, RN MS September 10, 2009 Page 11