Crista Ellis 00:00:00
Hello and welcome to the Parkinson's Foundation's webinar Veterans and Parkinson's: Planning for the Future. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Jenny Fearday, Danielle Agpalo and Laura Cameron. We are recording today's presentation. You will receive a follow-up email from us with a link to today's recording and other resources in the coming days.

The mission of the Parkinson's Foundation is to make the lives better for people with Parkinson's, whether you are living with Parkinson's, caring for someone with Parkinson's, or working to end the disease. We are here to support you.

To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global community. Today's program is a great example of one of the things we are doing to help us meet these goals.

The Parkinson's Foundation provides weekly education and wellness programs virtually through our PD Health at Home series, including Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, our Expert Briefings, and EP Salud en Casa. You can learn more and register for these programs by visiting Parkinson.org/PDHealth.

Part of the Foundation's commitment is to reach every person living with PD. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's disease, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal to improve the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources, and support. Please visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living well with Parkinson's as a veteran. That website is Parkinson.org/Veterans.

This year's Webinars for Veterans is presented with support from the Don and Lorraine Freberg Foundation. We want to take this moment to thank the Freberg Foundation for helping to make this program possible and for supporting the mission of the Parkinson's Foundation.

Crista Ellis 00:02:11
Today's discussion will focus on preparing for your future and making decisions regarding advanced care and treatments as a veteran living with Parkinson's. To conclude this year's veterans webinars, we will host our final event on December 14, where we will discuss how, for some veterans, environmental exposure and toxins can increase the risk of PD. You can learn more about this event and register to attend at Parkinson.org/VetsEnvironment, or you can visit Parkinson.org/Veterans.

We understand the vastness of navigating Parkinson's disease as a veteran, which is why we have designed an educational opportunity where we will focus on different topics. Today, again, the focus is on planning for the future. If you have questions outside of today's topic, please plan to attend one of our future events, watch an archived event, or contact our Helpline at 1-800-4PD-INFO.

As we begin the formal webinar, please know that we are recording today's presentation. You will receive a follow-up email from us with a link to today's recording and other resources in the coming days. I'd like to shout out and acknowledge those who are joining us from a watch party. Welcome Parkinson's Group of the Ozarks, the Cincinnati Music and Wellness Coalition, the Cicero American Legion, the Cats JCC, the West Morris Area YMCA, and the Freeburg JCC.

We would love to know where everyone is joining us from. Please share in the chat. I'm tuning in from the Appalachian Mountains of western North Carolina.

Today we welcome Emily Hall. Emily Hall is a clinical social worker with the Central Virginia VA Healthcare System in Richmond, Virginia, and joined the Southeast PADRECC Interdisciplinary Team in September 2022. She completed her Bachelor of Arts degree in psychology and sociology at Gettysburg College and Master of Social Work degree at Virginia Commonwealth University. She has experience in emergency room and medical social work case management, acute inpatient brain injury rehabilitation, mental health skill building, intensive in-home services, parent coaching, and psychiatric trauma treatment for inpatient and partial hospitalization day programs.

Emily has been employed at the Central Virginia VA Healthcare System since August 2018, previously serving as clinical social worker in the Polytrauma Inpatient Rehabilitation Center, working with veterans and active-duty service members. Emily is a board-certified LCSW supervisor and MSW clinical field instructor for students. She serves on the PADRECC National Education Committee and assists with co-facilitation of several PADRECC support groups. She continues to fulfill her passions of supportive counseling, resource education, care coordination, geriatrics, aging, mental health, and medical social work on her team. Emily, thank you for sharing your time and knowledge with us today. It's such a pleasure to have you.

Emily Hall 00:05:17
Thank you. I'll go ahead and start sharing my screen. Okay. All right. Almost ready. All right. Is everything okay with my slides? You can see them right now?

Crista Ellis 00:06:05
It's great. Thank you.

Emily Hall 00:06:07
Hi, everyone. Thank you again for the introduction, Crista. For those who don't know, PADRECC does stand for the Parkinson's Disease Research, Education and Clinical Center. Today I'm going to be presenting on Veterans and Parkinson's: Planning for the Future.

Advancing Parkinson's disease may bring the need for more planning to best address your future care needs. In this session, I plan to discuss some helpful tips on preparing for your future and making decisions regarding advanced care and those treatments as a veteran living with Parkinson's disease.

Now here's the tentative schedule for today. Depending on where you're tuning in from, these are all East Coast times. There is a ton of information and resources I'd love to go over, but in the interest of time, I have included a lot of these websites and links within the slides that you'll be provided at a later time, in case we aren't able to go over those during the presentation itself.

Disclosures: I don't have any disclosures for you today.

Briefly, I just wanted to provide an overview of Parkinson's disease as we start to talk about advanced PD treatment options, planning for the future, and palliative care. Many of you have probably been living with PD for years or are in the later stages of advanced PD yourselves, but many of you may also be new to this disease process.

Parkinson's is the second most common neurological disease after Alzheimer's disease. It affects dopamine-producing neurons in a specific area of the brain, resulting in a loss of dopamine. The mean onset is 60 to 70 years of age, and that increases with age. Young-onset occurs between 20 to 50 years old and is about 10 to 15% of those diagnosed in the population. Men are more likely than women to develop PD. There are approximately one million people in the U.S. who have PD.

There's an estimated 90,000 new cases each year, and of these one million people, there are approximately 110,000 veterans living with PD. Worldwide, there's an estimated 10 million people as well.

There seems to be a series of interactions from environmental and genetic factors going on, and there is a ton of research dedicated to finding these links. You all can refer to the Parkinson's Foundation Library for a lot of these resources and education as well. I won't get too much into that today, again, as we're talking more about the resources side of things.

Emily Hall 00:08:55
As we know, PD is made up of what we call motor and non-motor symptoms. Those motor symptoms are more easily identifiable by a movement disorder specialist or provider. The non-motor symptoms are symptoms that are not as overt, but very critical to assess for and monitor. It's essential for providers to ensure that all motor and non-motor symptoms are addressed as best as possible for quality of life.

Now here we do have the infamous Parkinson's iceberg. What is key about the iceberg is that healthcare providers are continuously evaluating and checking in on these non-motor symptoms that sit below the surface of the iceberg; that your loved ones are observing, taking note of these; and that the person with Parkinson's is taking note of these as well, but also that they feel comfortable and that they are in an environment where they can talk about these issues.

In 1967, Hoehn and Yahr defined five stages of PD based on the level of clinical disability. Clinicians often use this to describe how motor symptoms progress in PD. After the honeymoon period and the early years of PD, when those dopaminergic drugs usually provide excellent control over the motor symptoms of the bradykinesia and rigidity, the majority of persons with Parkinson's begin to experience less reliable drug response upon disease progression.

Persons with Parkinson's likely experience complications from the long-term drug treatment, including the motor fluctuations, which we know are the wearing off and the on-off symptoms, and dyskinesias. In advanced PD, prominent motor symptoms, as reported in a study of 50 patients in stage four or five on this scale, include severe freezing of gait and overall movement, postural instability, dysarthria, which is difficulty speaking, and dysphagia, which is difficulty with swallowing.

In stage one here, we have this initial stage where there are mild symptoms that generally don't interfere with daily activities. You have tremor and other movement symptoms occurring on one side of the body only. Some changes in posture, walking, and facial expressions might occur.

In stage two, symptoms start to get worse. Tremor, rigidity, and other movement symptoms affect both sides of the body or the midline, such as the neck and the trunk of the body. Walking problems and poor posture may be apparent. The person is able to live alone; however, those daily tasks are more difficult and may require increased time to get things done.

This is considered the mid-stage at three. You have a loss of balance that is hallmark. This means that a person will have unsteadiness when they turn quickly or, if they are in a standing position, they can easily be pushed over. Falls are very common at this stage, and motor symptoms continue to worsen. Functionally, the person is somewhat restricted in their daily activities now, but is still physically capable of leading an independent life. The disability may be more in the mild to moderate range at this stage as well.

If rehab therapies have not already been consulted at this stage, it's highly recommended that they are by now.

Emily Hall 00:12:28
At this point, symptoms are fully developed and severely disabling. The person is still able to walk and stand without assistance, but they may need to ambulate with a device like a cane, a walker, a rollator, maybe a wheelchair for safety. The person needs significant help with activities of daily living at this point and typically is not safe to be living by themselves anymore.

This is the most advanced and debilitating stage. The stiffness in the legs may make it impossible to stand or walk. The person may be what we call bed-bound or confined to a wheelchair unless provided assistance of another person or mechanical assistance with the use of a lift. They may also require around-the-clock care for all activities from another person, in-home services, or in a nursing setting.

What are some of these advanced PD symptoms? Research shows that advanced PD is identified by disabilities requiring help for activities of daily living, such as bathing, dressing, grooming, toileting, and feeding; presence of motor fluctuations with limitations to perform these basic activities of daily living without help; severe dysphagia, so swallowing issues; recurrent falls; and dementia. Symptoms may include limited mobility, as mentioned. Medications are losing effectiveness.

Symptoms are arising about 10 years or more after living with PD. They may require, again, an ambulatory device for mobility, so the cane, a walker, rollator, or wheelchair. They may have a higher risk of falls, may need assistance with the ADLs, activities of daily living. They may have higher risk of dementia or cognitive impairment. They may also be experiencing hallucinations or delusions. They may be bed-bound, requiring a hospital bed, or what we call maximum assistance or dependent transfers of another person or, again, using a lift, and maybe 24/7 nursing care from another person, an aide in the home, or in a facility.

Patients with Parkinson's disease were found to have more physician consultations and more emergency room visits per year than did reference subjects with similar age and sex in a population-based study. Research also showed that they had a greater and earlier need for institutional care, meaning senior living, assisted living, memory, or long-term care placement. Main reasons for hospital admissions were pneumonia, motor decline, urinary tract infections, and hip fractures, occurring 1.5 to 2.6 times more frequently than controls.

They were also twice as likely to be hospitalized for more than three months and more likely to have in-hospital deaths. With these advancing symptoms and progression in PD, understanding what lies ahead, what treatment options are available, communicating desires with your loved ones, working with your care team, and planning for the future are critical to try and limit these statistics as much as possible.

Emily Hall 00:16:01
When you've met one person with Parkinson's, you've met one person with Parkinson's. How many of you have heard this before from your provider, from your support group, or probably from some of these webinars you've listened to? What does this truly mean? It means that each person with Parkinson's symptoms are very unique, how their disease progresses is unique, how their advanced stage of PD looks is unique, and how they choose to treat these advanced stages and symptoms can be unique.

However, utilizing your movement disorder specialist and your interdisciplinary care team, including palliative care, who are experts in this, can guide you through this process and help try and set expectations as much as possible for you and your loved ones.

It's essential to understand that as your PD progresses, treatment plans may change as well. One of our key mantras is, if you don't move it, you lose it. You might find yourself constantly doing exercise programming, home exercise, and keeping up with some rehab therapies too. You've got Rock Steady Boxing, moderate exercise, PD dance, yoga, tai chi, and all these other exercise programs. As PD progresses, one may need to take a step back and reevaluate their routine as symptoms progress in order to avoid overexertion and fatigue.

One good way to get advice on this is speaking with your provider and getting a referral to a physical therapist for an evaluation, who can also give you some professional recommendations as well. While we don't want to allow Parkinson's to take over our life, it is important to sometimes take a step back and make sure that we are making certain adaptations where we need to accordingly to keep the balance. While we don't want to be overdoing it, we also don't want to start developing a habit of a sedentary, immobile lifestyle either.

As time progresses and people have been on their PD medications for years, they may start to lose effectiveness, requiring some tweaks to dosages, scheduling, and the actual medications. What's important to remember is that this is normal, and to make sure that you are communicating with your provider and your nurse. Your PD specialist or nurse may try to initiate these discussions with you, but it is also vital for you and your care partner to be open and honest with them as well.

Be very specific and take notes. How is it when I first wake up? How long does it take for me to feel better after I take my meds in the morning? When does it start wearing off in the morning? What is the worst time of the day for me? How is it at bedtime? Am I able to sleep through the night? Because once you reach this advanced stage of PD, where your medications are wearing off faster or are not as effective, then changes need to be made for a better quality of life for you and your care partner. This may open new discussions for more alternative treatment options or even more aggressive or surgical interventions.

Emily Hall 00:19:15
Painful and debilitating dyskinesias are less common today than they were 10 years ago due to more cautious, careful, and individualized anti-PD therapy. As the condition advances and symptoms become more complex, the number of people involved in your care may increase to involve a range of different health and social care professionals. The person with Parkinson's and care partner are key members of this team. Right after that, you have the specialists and the PD nurse, who are your first-line call for all of your PD-related inquiries.

They aim to find the best combination of treatments that will help you manage your symptoms as well as possible. They will also be the ones that can refer you to any other healthcare professionals. The services available and the types of professionals you can see will vary between different areas. Other healthcare professionals in the advanced stages could include palliative care, social work, pelvic floor physical therapy, mental health, nutrition, spiritual care, and other rehab therapies.

There may come a time where, after numerous medications have been added, the individual starts to suffer from what we call high pill burden, when a person becomes overwhelmed with the number of medications they're prescribed or the frequency at which they have to take them. This is totally normal. It is a ton of pills, as you can see here. This can especially come into play if you're experiencing swallowing issues as well. Again, this is where your PD specialist or your nurse may start these discussions about alternative treatment options with you and your care partner, especially when your condition is controlled by the medication you're taking.

I won't get too much farther down this rabbit hole, since I am the social worker here and not the medical professional.

Again, these are some of the other care options with advanced PD. As discussed, the alternative option when the medications start losing effectiveness and you're having that high pill burden, there are some more invasive treatment options that you can look at and try to discuss with your movement disorder specialist team. They are the experts. They can provide you the education and the resources, address any questions or concerns you have about what you want to weigh your options with. They can help connect you to other individuals and support groups that might have had those procedures done, look at different prescription management for some of those more difficult symptoms that you've had, and all different things that you can talk to your provider about.

Emily Hall 00:22:06
Another vital point, again, is how do I discuss these with my provider? Keep in mind, for the person with Parkinson's, it's important to ensure that they feel comfortable having these discussions with their providers and their care team openly in order to allow for needs to be addressed as much as possible so that this can improve quality of life for them and their loved ones. As medication schedules, dosages, and wearing off periods may become more complex, bringing information and notes to appointments can be very helpful, as well as any written-down questions ahead of time.

Don't be afraid to ask questions, especially if you or your loved one don't fully understand what your provider is saying. There are a lot of big, complicated terms often that we might mispronounce. If you're at the VA, a lot of acronyms are thrown around all the time here that sometimes slip out because they're second nature to us. If you need to stop us and slow us down to explain it, do not feel bad.

Now that being said, a lot of times at the end of your appointments with providers, you might get the, "Do you have any questions at this time?" and draw a blank, or that question that came up in your brain five minutes ago just suddenly disappeared. That's fine. If they come back later, call the clinic or send a secure message. In our clinic, especially, our clinic nurse often will have follow-up phone calls with patients, especially if they've had a significant medication change or another big change happen in their care.

Make sure to voice your concerns. In our support group, one of our participants said that she will list down all the things she wants to talk about, and then she ranks them in order by how much they matter to her. She'll put at the top pain. Pain is the most important of what she wants to talk about today. Then sleep, and then her tremors. Again, voice your goals, your preferences, and what matters most. What are the most bothersome symptoms for you?

Ensure to keep regular appointments with your provider. If there are any barriers to that appointment, please call and let us know. Call and let your provider know. If it's a travel issue, if it's travel burden, if there are financial issues with co-payments, whatever it is, please call us and see if there's a way that we can help ensure that you're seen. We strongly encourage you also to have someone attend an appointment with you, at least for part of your appointment.

Not only do you have an extra set of ears, someone to help you out with the drive if you need it, but you also have a note taker and another advocate there with you in the appointment as well. They can also ask us extra questions that maybe you didn't think about. Or if they're observing something at home that maybe you didn't pick up on, they can also provide that to the doctor as well.

Emily Hall 00:25:14
In between your appointments, make sure if any significant changes occur, please contact your clinic via phone or, for the VA, we have secure messaging, but a lot of providers now have the portals, the patient portals, that they use as well. Again, these are primarily monitored by a nurse before they go to the doctor.

The nurse is your best friend, and we always encourage you to have a strong relationship with your clinic nurse because they are fast to respond and they are the problem solvers. They will get the provider involved when they need to, but they will respond to you the fastest. We also encourage our patients to notify our clinic if they're ever hospitalized, especially in the community, so that we can help coordinate any care and make sure if there are any kind of medication changes that might occur, or they need help talking to the providers at the hospital as well.

Utilize your social work, your clinic nurse, or the educator if you're feeling overwhelmed by information or appointments. We can help sort through it with you, prioritize your needs, and coordinate your care, especially communicating with the team as well.

What is also important when you start having these discussions with your provider is to be very clear what your expectations for quality of life mean to you, because they may be very different from what they are to myself. I want those of you listening right now to think to yourself: What does quality of life mean to me? What does that look like? How would I measure that? What do I enjoy or look forward to? Also, what are important milestones for you? Goals that you have for yourself? These are all very specific expectations to communicate with your provider so that they can help individualize your PD treatment, help manage your advancing PD symptoms, and know what other treatment options might work best for your lifestyle.

That brings us to the first break, because I know I have a lot of content for the second part.

Crista Ellis 00:27:42
Thanks, Emily. If you could end your share screen. Great.

Everyone who's joining us today, Emily, I just want to thank you for prefacing what we're about to go deeply into as far as planning for the future and long-term care for Parkinson's. We're serving this time just to do a temperature check. How are we doing? What kind of questions might you have already for Emily, if anything? If our Q&A doesn't start blowing up, we'll jump into part two of the presentation.

I'll use this opportunity just to highlight again the resources that the Parkinson's Foundation has for people living with Parkinson's and are also veterans. We've had three veterans webinars at this time that cover various different topics of veterans living with Parkinson's, including how to navigate the Veterans Affairs system; managing anxiety, apathy, and depression as a veteran living with Parkinson's; and then today's topic of planning for the future in Parkinson's disease.

Good. Emily, Bill is asking, do support groups exist at VA hospitals?

Emily Hall 00:29:00
Yes, we do have support groups. In the next section, we're going to talk about palliative care a little bit, and then after that I have a specific slide about support groups that are available that are PD specific. Each of the PADRECCs in the VA system have their own support group available. Depending on your time zone, one of them might work better for you than the others.

Typically they are all open groups, meaning that you can participate in them by contacting the individual who hosts it. We have some people participating in our Philadelphia and Richmond one who are not necessarily involved in our VA. They just listen for our programming. It's an open group, per se. There's a link on that page that has a list of all of them.

There are also two groups that we just started through Richmond this year that are open to everybody, but there's a caregiver-specific one and then there's a young-onset one because we found that there was a very large gap for the young-onset support groups, especially veterans. That group has been actually going very, very, very well. Our nurse clinical educator Jess Kaplan runs that. I think it's on the second or third Wednesday evening, but they're a very talkative bunch and get along very well. We do have that information in the slideshow, so you'll be able to access that.

Crista Ellis 00:30:54
Great. Thanks, Emily. Patrick is wondering, do all PD patients progress through all five stages of Parkinson's disease?

Emily Hall 00:31:04
Typically they classify it. I'm not a doctor and/or a nurse, so I will say I can't give any technical medical advice on here or talk about medications, but I think typically that is what you see with Parkinson's disease, and knowing what to expect when you get to the latter stages is important.

Again, I think it also depends on the person and if they have other comorbid medical conditions as well, and whether those comorbid medical conditions might be the driving force before the PD. But I think it is very common to see some level of progression toward stage five.

Crista Ellis 00:31:52
Thanks, Emily. Pamela's asking, must a veteran have a service-connected disability to receive VA support services for Parkinson's?

Emily Hall 00:32:04
No, they do not. I'll get a little bit more into that in the second section. They just need to be eligible for VA healthcare services. They do not need to be service-connected for Parkinson's. They just need to be eligible for VA healthcare services.

Crista Ellis 00:32:24
Right. Thanks for answering that for Pamela. Mike is asking, can the VA hospitals be a resource for caregiving, obtaining things like walkers, etc., and home modifications?

Emily Hall 00:32:38
Yes. That is one of the great things that you can access through the VA. Again, you have to be eligible for VA healthcare. That's the staple big takeaway, which you'll find on my slides too: call, call, call. See if you're eligible for healthcare services.

The prosthetics department is an amazing resource. As long as it's medically justified, they can order any equipment that you need. You don't have to go through Medicare, which is a giant headache in itself. As far as home modifications, they have a couple different grants that can be accessed. Some of it, like the amount of grant that you can get, will depend on your service connection level. If you're a higher rating, you might get more money type of situation, but I'll get more into that in my presentation too.

Crista Ellis 33:37
A question from Laurel. She's asking, can I choose to go to a private neurologist versus one from the VA?

Emily Hall 33:45
Yeah, you can. If you are seeing a private neurologist in the community under your private insurance, that is completely fine. Now, if you are getting your care through the VA, and again, I think it depends on your VA, so I would definitely talk to your local VA.

I know for Richmond, as far as community care, if you live within a certain mileage of that facility and they have that service there, if they can't see you within a certain number of days, then that makes you eligible for community care. Or if you live a certain mileage away from the facility, that makes you eligible.

But if you live five miles from your local VA and you have neurology services available there, typically you have to use your own insurance to see an outside neurologist, unless for some reason the neurology department at the VA is booking out months and it's impossible for you to be seen. That's usually how that works.

We have a lot of patients through our network in Richmond because we have movement disorder specialists, especially those that live out of the area. They have their neurologists that they see out of the area, but then they all collaborate and also see our movement disorder specialists in Richmond too, and they'll work together a little bit.

Crista Ellis 35:31
Thanks, Emily.

I'm seeing a lot of questions about how to obtain services from Veterans Affairs. I would like to point people to the direction of our Resources for Veterans Living with Parkinson's webinar. If my team would drop that webinar in the chat, we answer all kinds of questions about eligibility, service delivery, and how to connect with a veteran service officer to determine eligibility and how to navigate Veterans Affairs. Just know, I see your questions, and because the topic of today's discussion is planning for the future, we're going to stay focused on planning for the future. You can explore eligibility options and healthcare services through the VA by watching that archived webinar.

A couple more questions before we jump into part two. Thinking about the different stages of Parkinson's, it seems to have some interest right now. Are the stages related to cognitive decline and/or dementia?

Emily Hall 36:30
The stages, the Hoehn and Yahr, they focus a little bit more on motor functioning, to my understanding, and a little bit less on cognitive decline. But that is something that is closely monitored by palliative care and by your movement disorder specialist because cognitive decline, I would say, is very unique to the person.

We have a lot of patients in our clinic where it's very interesting in that sometimes the cognitive decline comes first, and sometimes it comes much later in the disease. There's a lot of interesting research on it and trying to figure out exactly the reasoning behind it. I would encourage you to listen to some of the resources in the Parkinson's Foundation library, but the specific stages are more geared toward motor functioning, I would say.

Crista Ellis 37:42
Thank you, Emily. Appreciate the callout for the extensive library of resources we have talking about cognitive... Wow.

Thinking about a veteran who may be living alone and doesn't have a caregiver or care partner, any advice on getting support as a veteran who may be navigating this on their own?

Emily Hall 38:08
Yeah. I would recommend definitely trying to help connect them with, one, making sure to see if they are eligible for care with the VA. That is number one. Two, trying to get them connected with a social worker at their VA. There's typically always a social worker associated with their primary care clinic.

That social worker can do a full psychosocial assessment and really see from there what they are eligible for. What I'll talk about later in my presentation is some of the different potential options for them. A couple of them are good options for people who either don't have a support system or have maybe a support system, but it's one or two people and they live on the other side of the country. Different options like that might be available. But again, number one is to make sure you're eligible for care.

If you don't have a service-connected disability rating or anything like that, always talk to a VSO, a certified VSO. Again, it's in Gretchen Glenn's presentation more so, but they will help guide you through that process.

Crista Ellis 39:36
Right. Okay. Thinking about support groups again, we're getting more questions about support groups. Anyone who is inquiring about that, know that Emily is going to cover it in detail when we get back to presenting mode.

One person is asking, can I see the physician assistant, or the PA, instead of the doctor? Is it more beneficial? Is it not? Is there a consequence to seeing the PA? Can you speak a little bit more about seeing the PA versus the doctor?

Emily Hall 40:13
Yeah. I personally don't find there being a consequence to seeing another provider. Our clinic is made up of two MDs, a DO, and an NP. I'm a little biased. I love NPs. Most of my providers are NPs. I do have a little bias toward them. I just feel like sometimes they give you a little bit more time and love. But there is not a ton of negative to seeing them instead.

A lot of providers too, like for our VA, we are a learning hospital, so we have a lot of med students and medical residents. They are seeing a lot of our patients too. Sometimes our providers aren't even the ones that are evaluating the patient. Sometimes we have the medical students. However, at each appointment, the patient is given the option by the provider: "Hey, I have a medical student here with me. Is it okay if they see you? Is it not okay if they see you?" So they're given the option.

They aren't like, "Hey, this is who's seeing you. Bye." They are given some autonomy with that. Then the provider is always reviewing the chart and going back in and rechecking, so there is still follow-up with that. But in terms of PA versus NP or MD or DO, I really think that they're all strong providers.

Crista Ellis 41:55
Okay. Thanks, Emily. A lot of the remaining questions that are coming in right now are really connected to the second part of your presentation. I think now would be a good segue into part two, covering long-term care planning, palliative care, and some financial resources as well. We'll tune into part two. Stick around, guys. We'll have another Q&A after Emily covers a lot of the topics that you're questioning about right now.

Emily Hall 42:21
All right. I'm shared. All right.

Palliative care aims for you to keep your quality of life through managing symptoms. It's helpful in relieving pain and managing any other distressing aspects of your advanced PD. It helps with chronic symptom management, specifically non-motor and autonomic symptoms that are a little bit harder to manage and might be overlooked. These might be your urinary issues, your constipation, when you're having a lot of blood pressure issues that are hard to manage as well, excessive salivation or drooling, some of those psychosis issues, the hallucinations, delusions, some of the behavioral issues, nutrition, swallowing issues, and then some pain and energy as well.

It also provides supportive care for the whole system, so it helps guide conversations with the person with Parkinson's, their care partner, and the support system that they want involved to ensure that every person is on the same page with their preferences for care.

It works on improving quality of life for that individual by supporting their relationships and their engagement in pleasurable activities. It provides support for the care partners to reduce stress and improve their quality of life as well. They'll look at what's going well for them at home, but also what are some of the challenges that are still happening at home. It provides anticipatory guidance by planning for expected changes in the condition and helping to normalize some of those expectations.

A key component is advance care planning, where they review current advance directives, if there are any on file; inquire if they have previously completed one; encourage them to connect with social work to scan those into records; or even sit down and complete those with social work as well. It's really meant to start discussions on who their current legal next of kin is, depending on what state they're living in, and who they want to make decisions for them.

Palliative care is also meant to complement but not replace other treatments. It's meant to provide recommendations to the current main providers like the primary care provider, the movement disorder specialist, or neurologist, but it's not meant to replace anything that they're doing. It's meant to supplement it. It's supposed to help.

Some items that might be addressed during these visits with palliative care would be what matters most. What does a good day look like? What does a tough day look like? What are things to look forward to? What are some of the concerns that you have for the future? Then you might review the current list of medications and lab work and see how everything looks. Then really look at the goals of care and the setting of your advanced Parkinson's disease, including where your life-sustaining treatment preferences are along those advance care planning lines and what kind of code status you would like, meaning full code or do not resuscitate, and reviewing that on a regular basis.

Emily Hall 46:05
These are some of the common myths of palliative care. There is a common misconception that palliative and hospice care are one and the same. Hospice care is for those who are imminently dying with a prognosis of six months or less to live. For palliative care, this is meant to be supportive care for chronic symptom management where you can still receive treatment and be enrolled in services. It's available inpatient and outpatient. It's meant to address much more than just pain. It's billed like any other specialty care service, and it serves as a supplement to the care that you're receiving through your primary providers.

Another way to think of it is the three Cs of palliative care. You have comfort, communication, and coordination. When you're feeling pain, nausea, constipation, shortness of breath, and some of these other symptoms, this can be more than family and friends can manage for the person. They need a professional to provide assistance in managing these.

For communication, having an open discussion of the diagnosis, prognosis, treatment options, and informed decision-making. Having someone to help coordinate that can alleviate a challenging step and help with the advance care planning.

For coordination, they're helping to ensure that all parties understand the patient's goals and objectives, then direct care based on these goals. They can focus on what really matters in these difficult conversations.

These are just a few of the benefits of palliative care. There are a million, but in the interest of time and the number of resources that I have to get through, these are just a few of them. It really works to address pain and some of the other common autonomic symptoms and non-motor symptoms in advanced PD, especially constipation. It helps with better communication between the person with Parkinson's, their provider, and their family members. It helps with an alignment of care with the wishes of the person with Parkinson's that meets their emotional and spiritual needs.

Emily Hall 48:30
Results from the first randomized clinical trial comparing palliative care to usual care for PD and related disorders found that palliative care significantly improved quality of life, symptom burden, and grief while reducing caregiver stress at the six-month mark.

In terms of looking at palliative care from a telehealth perspective, telehealth has been found to increase access to palliative care for those who live in more rural, remote areas or are homebound due to their advancing PD.

In 2017, two randomized controlled clinical trials showed that outpatient care for people with PD provided via telemedicine was equivalent to the care provided in person, but telemedicine was actually significantly preferred to the in-person visits, saving a median of 88 minutes and 28 miles per visit. This really shows how much palliative care can be beneficial and how much it can be beneficial when used via telehealth, especially for our advanced PD patients where there's a lot of travel burden trying to get to these appointments.

There are numerous benefits with this, but I'm going to keep going.

It really looks to address caregiver burden because caregiving can be a very lonely, isolating, difficult time, especially during advanced PD. It's defined as the perception of strain and stress resulting from a perceived obligation to provide care for their loved one with PD. As we have found from research, the symptom burden for patients with PD is very similar to those with metastatic cancer.

Therefore, these informal caregivers, meaning non-agency, non-aide, a family or friend, are the ones providing the necessary support to the person with Parkinson's and making their own personal sacrifices for the patient care, which adds to society's overall cost of Parkinson's. This cost can include loss of working and leisure time, financial hardship, and increasing morbidity.

Some studies have shown that characteristics related to higher rates of burden include disease severity, presence of non-motor symptoms, self-reported quality of life for a person with Parkinson's, and higher rates of self-reported depression in persons with Parkinson's. As you can see with those, these are all things that palliative care aims to look at and treat to help try and relieve caregiver burden.

Emily Hall 51:20
Again, in palliative care, it's important to help identify, one, who the primary and additional caregivers are; two, how to incorporate needs and preferences of both the patient and caregiver in all care planning; and then improve the caregivers' understanding of their roles and teach them skills necessary to carry out the tasks of caregiving. Also, to recognize the need for periodic reassessment of care outcomes for both the patient and the caregiver.

Anticipatory guidance is about creating a safe space for conversations about a person's wishes and preferences. Studies show that care partners want some idea of what to expect. This allows for open, ongoing conversations about choices related to the medical impact on employment, living situations, finances, and safety concerns. It also provides care partners with guidance that may help inform future decisions by offering strategies, ideas, and solutions.

Some questions that might come up during these conversations from the provider might be: "Is it okay for us to talk about this?" "Are there specific things you're wondering about the future?" "Some patients I work with worry about blank. Are these things that you're worried about?" "Have you thought about how you will adjust if or when this happens?" "Is there something that you're worried might change?" "Can I offer ideas of how I've seen other families handle that?" "Can I offer something that I've seen other persons with Parkinson's or care partners do when they encounter a similar situation?" The goal is to offer guidance for the future and to normalize it.

Emily Hall 53:12
This is the What Matters to Me workbook that was developed in collaboration with The Conversation Project. It is designed to help people with serious illness get ready to talk to their healthcare team about what is most important to them. It's a great starting point, and it's great to use as a conversation starter. Again, they might be putting this in the chat, and it's also going to be on this page as well. If you look at this, this is just an example of some of the questions in here. They are all questions that have palliative care principles as well.

After completing this workbook, the next steps are to talk it over with someone else. If you fill out this workbook by yourself, it's important to make time to share your answers and questions with other family members, a friend, or another trusted person. You might want to also give them a copy of this with your answers. It's also important to talk it over with your healthcare team. Make an appointment to talk about your workbook, sharing answers and any questions you might have.

Your social worker, provider, or palliative care provider are all really good people to start with for this conversation. It's also important to pick a proxy. This is the person who you choose to make medical decisions for you if you are not able to make them for yourself. Consult with your provider and social worker, which we'll get into in the next slide, on creating an advance medical directive. But what's most important too is to keep talking because, as we find, preferences can change over time as health changes or time passes.

With advanced PD, if you complete a medical advance directive when you are early in your disease, initial diagnosis, or maybe stage one or two, how you feel later in the disease and what your preference for care would be might be vastly different. It also might be vastly different who your decision makers are too.

Advance care planning is a process that enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate. Of note, if you complete this with an attorney or an estate lawyer, please ensure that you are including some level of detail on your wishes or preferences for care.

Sometimes these documents can be a little sparse and really only designate who your healthcare proxies are because the focus of your appointment is on your last will and testament. Then there are a couple of small documents that have your financial power of attorney and your medical, and sometimes it doesn't go into great detail on what your healthcare preferences really are, just who you want to make decisions and what their powers are with that. Just keep that in mind.

Emily Hall 56:29
With the known impact of PD on cognitive functioning and communication through its progression, a person with Parkinson's should have an opportunity to address advance care planning early in the disease process. However, the content of the discussions may be more detailed and targeted later on.

The AAN recommends an annual review of advance directives and designated healthcare surrogates, which typically is the model that we follow here at the VA. For all veterans, the standard is every three years. But typically, for our veterans here in the PADRECC clinic, we're seeing them under three years regularly, so we try to review them every year.

While we as providers feel it's important for everyone to have their wishes well documented, it really isn't up to us. It's important for us to meet you all where you are in this process and your readiness to engage in that discussion. In a survey of 267 patients with PD on their preferences about prognostic and end-of-life discussions, although 94% of patients preferred early information on prognosis and treatment, 68.5% actually reported having some kind of ACP document.

Only about half of the people with Parkinson's wanted to discuss advance care planning documentation early on. A smaller portion wanted early discussion about end-of-life care planning, which was 27%, or end-of-life care options such as hospice, which was 21%. A very small number actually felt that end-of-life issues should never be discussed. It was more common for patients to want to discuss these issues when their disease worsened.

Thus, when a person with Parkinson's functioning starts to take a turn significantly or their transitioning care changes, these are typically good moments where we try to step in and bring these back up. In a 2013 published study in the UK of 236 patients, for those with Parkinson's disease who passed away in the hospital, 97% had never had an ACP discussion documented in their medical chart, which is a very alarming statistic. Social workers can provide additional education, support, and assistance with completion of documentation.

Emily Hall 58:59
They are also key to ensuring this is scanned properly into your VA records.

These are just a few myths about advance care planning. Your loved one may not necessarily know what you want. In one study, nearly one in three people actually guessed wrong. This might be when you are in a high-stress situation, especially if a loved one is having an emergency medical surgery or something has happened. You aren't necessarily thinking in your right mind, so you might not know exactly what to decide in that situation, which is why it's great to have this all in writing. You don't have to think. You just have to read.

You do not need a lawyer for advance care planning or directives. Most states offer free advance directive forms online, and the VA does have a form as well. I have those on the next slide. It's impossible to predict the future, and emergencies can happen at any time. You do not need to wait until you're in an advanced stage of Parkinson's. You do not need to be very ill or very old. We recommend that anyone at any age has an advance care plan.

I have a financial and a medical one in place from my years of experience of acute inpatient rehab and patients who have loss of motor control.

While it is also helpful and legal to have it in writing, the most important part is to start having these discussions and wishes with your loved ones. The good part about advance care planning is that it helps to start having these discussions, giving everyone the paperwork and start actually thinking about it. You can also change your advance directive at any time. Again, we recommend reviewing this annually. Granted, when you make this request, you have to make sure that you have capacity to do so when you want to change it.

Emily Hall 1:01:06
Five Wishes is another great resource that is a national advance care planning program. I've also attached VA-specific advance care planning information, including the actual form. There is a lot more information online. Of note, the VA can accept outside advance directives as long as they are valid, so they don't have to be on the VA form. We can accept outside ones and scan them into our system. We do offer a lot of education. We offer group visit classes on it. This is all the information in here.

What's important about palliative care is to ask your provider for a referral. Palliative is not just for advanced PD or end of life. It can be for any stage of Parkinson's disease, and it's been shown in studies that the earlier that you have palliative care integrated, the better symptom management and the better integrated care that you will have. I recommend speaking with your movement disorder specialist or your primary care provider for a referral.

We are very blessed here in Richmond to have a nurse practitioner that works specifically with our patient population, and I realize that not every VA may have that. Not every neurology clinic or system may have that, but every VA does have a palliative care program. Your primary care provider or your neurologist can also make that referral as well.

Emily Hall 1:02:45
Now, as mentioned, the key players on the team are your person with Parkinson's, the care partner and the family, the movement disorder specialist or neurologist, and your nurse. But on this side, I've included most of the members of our interdisciplinary team here at Richmond PADRECC, just so you can get an idea of what it's like to really have an entire care team behind you when you have advanced PD.

Again, this is just our interdisciplinary team. It's one of the care options that we provide here in Richmond. While all veterans at all stages in the disease can come see us in our clinic, we also play a very key role in keeping up with those that are in the advanced stages as well. Our goal is to essentially see our patients every year in their disease progression and try to keep them tuned up, per se.

For those that were asking about the support groups, this is a list of all of our current PADRECC VA-specific Parkinson's support groups. Each PADRECC has its own support group. Right now, they're all virtual. I believe everything got converted during the pandemic and they're probably not being converted back.

Unfortunately, when you work for the government and the VA, space is a huge issue, and we have a lot of veterans who don't live in the area. We've decided to keep most stuff virtual, for now at least.

I've also included in here the link at the very bottom of the page where you can find all of this information online as well. I've also included the VA Parkinson's Fall Report that has a lot of different information as well, educational resources, and updates from each of the PADRECCs.

If you are a veteran or you have a loved one who is a veteran, please check your eligibility for care. You can do so by calling the VA toll-free hotline that's listed here. You can do so by contacting your state veterans agency. The website is listed here, but you can also do a simple Google search. For Virginia, you just search Virginia Department of Veterans Affairs and it'll take you right to your site, and you look for locations.

You can also find a local accredited veteran service officer. You can also call your local VA facility and ask for central registration. Sometimes this can be a slightly more painful process because you're working through the phone line. You can also try and make an appointment with them to visit in person. This is some of the information listed here that they may ask you for that appointment.

Again, we are huge advocates for connecting with the VSOs because they can not only help you with care, getting enrolled for care, but also looking for service-connected disability claims and benefits.

Emily Hall 1:06:08
Here's a general guide of the PADRECC service areas. Again, a lot of this is in my colleague Gretchen Glenn's presentation in June.

I'm going to skim through these, just so you have them on these slides, and I know they're putting this in the chat. But again, please, if you haven't already listened to this webinar, there's a lot of great information here and resources for veterans with Parkinson's, and it also talks about our PADRECC resources and the consortium centers as well. It goes into detail about what service-connected versus non-service-connected means. We're going to get a little bit more into planning for the future.

These are some of the current national average costs for care. Keep in mind that this differs state to state, and this is based on the national average. Memory care is typically at least $1,000 more a month than assisted living. Long-term care private rooms are always going to be more expensive than a semi-private room. If you need a cheaper option, the semi-private rooms are obviously more affordable.

In-home personal care can really add up, especially if you're needing more and more hours versus just needing a few hours a week. These are all private-pay costs.

Each year since 2004, Genworth surveys medical providers to gather a database of average regional costs for common long-term care expenses. This means that you can look up how much long-term care services may cost specifically in the area where you will want care. According to a Forbes 2022 article, they recommend saving about 3.1 years of the annual cost of a semi-private room for your area by age 85. Again, this is for the average senior, not necessarily Parkinson's-specific, but just to give you an idea for long-term care savings.

In the last slide, the average monthly cost of a semi-private room was about $7,756. If you're looking at that for a year, that's $93,072. That's a lot of money for one year. Then, if you add that up for three years, you're looking upwards of close to $300,000, a little bit less. I forgot to do that math on here. But I'm a social worker. I don't need that.

Paying for long-term care services. These are some of the options that we have. There's not a lot because Medicare does not cover long-term care. Long-term care insurance policies, not many people have these. They're also not advertised very well. The longer you wait to take one out, the more they will cost. If you do consider one, you may want to speak with an AARP representative or someone else about your options first before you sign up for anything, just so you can look at all of the different policies that you have.

Depending on the policy, they will likely not cover the full amount of room and board for nursing home care, depending on the location, but more so a percentage of it. If the long-term care facility that you choose is a very nice facility and it's costing upwards of $10,000 a month, it's important to look at the maximum amount that your policy will cover per month because if they're only covering $4,000 or $5,000, that's still $5,000 that you have to account for and pay privately per month to this facility.

Typically, these also work, most of them, by you paying upfront and then the insurance policy will deposit the money into your account.

Long-term care can also be paid for by state Medicaid, which you can look at by contacting your local department of social services, county or city. Typically, you can apply for this online, in person, or on the phone. This is based on income and varies from state to state. You can also pay privately, which, as we just went over, is very expensive. You can also use a VA contract nursing home placement, if you are eligible.

You are eligible for a VA contract nursing home placement if you are rated at a service-connected disability of 70% to 100%, or you are 60% and you are also rated as unemployable, which is another benefit that is applied for. Again, I would talk to a VSO about it.

Some veterans may also be eligible for placement if they require placement due to a service-connected condition that is less than 70%, but you would still want to be evaluated, verified, and approved by that CNH team at their local facility. Again, this is a very special circumstance. You would want to connect and verify exactly what your local facility CNH team would allow for. This is the general guideline.

For eligibility for a state veterans home, which we'll talk about specifically later, they can usually take your state Medicaid, private pay, long-term care insurance, which I didn't put on here, and then VA pay, which is the same eligibility for contract nursing home, which is the 70% or higher, or the 60% and unemployability.

Emily Hall 1:12:41
Now, looking at the VA, these are some of the great benefits to look at in terms of home accessibility when you're planning for the future. As your PD advances, it's important to consider your current and future home accessibility options. Thinking to yourself, is this your forever home? If not, where am I going to move to? Do I need to downsize? How many steps are there to get into my home? How many floors are there? Is there an option for a bedroom on the main floor? Is there an option for a bathroom on the main floor? How wide are the doorways?

Are there sunken rooms, which are very old school but do exist and they're very awful? Is there a walk-in shower, or is there a tub shower? Is the room setup accessible for wheelchairs or walkers? Will my walker or wheelchair even fit into the bathroom? These are all things to start thinking about. An occupational therapy consult or referral is perfect for this, and we have them through our PM&R clinics at the VA. But if you are at a PADRECC, typically, I know for Richmond, we have an occupational therapist that works specifically with our clinic.

All VAs also have occupational therapists who can do an assessment for home safety. They can order durable medical equipment to help increase home safety, ambulatory devices, and provide education on that as well. They can also do their appointments in person. They can do them on telehealth, on VVC, which is also great because they can beam into your house and see what everything looks like. They can also meet on the phone too, if they need to call you. Now, the prosthetics department is one of the best features, I would say, of the VA.

Durable medical equipment is covered as long as it is medically justified when it is ordered. They also cover ramps, vertical platform lifts, and stair glides or chair lifts, which I'll show pictures of on the next page. There are also home modification grants, which you might hear called a HISA grant. Eligibility and the amount of this grant can be dependent on your service-connected rating, and the link is right here on the page.

When you have these slides afterwards, you can go and check in on that. But the actual HISA grant is a prosthetic consult. It's something that has to be put in typically by an occupational therapist. Again, I would recommend having an evaluation done by an occupational therapist.

Assistive technology is also very unique outside of home accessibility. They do a ton of things for our Parkinson's patients, but specifically for home accessibility, they can help order wireless call bells, especially for our patients with low-volume voices, to help with reaching their caregivers in other rooms. Automatic door openers, different things for home automation like lights, thermostats, TVs, things to make it more accessible with technology and safer.

There are some other VBA benefits. Again, we highly recommend speaking with a VSO. I would look at this link here for some of the different disability housing grants for veterans that are available. These are often dependent on service-connected disability ratings and levels as well.

Again, these are examples of what a ramp would look like. They don't typically install those wooden ramps that you see. They're all the modular ramp installations that look like this, but they'll have companies do assessments and see what would look best. They can also do vertical platform lifts, like in a garage or something like that, and then stair glides or chair lifts as well.

When you're planning for your future too with advancing PD, it's very vital to take a look at your support system. The number one question is, do I have a care partner? How are they related to me? Are they supportive?

Do they live with me? If they don't live with me, how often do they come by? Do I have a backup care partner in case they are busy or unavailable unexpectedly? And if I don't have a care partner, do I have a plan in place if I need assistance and can no longer safely live by myself? How many supportive family members or friends do I have? Do they live nearby? Do they work full-time? Do they have their own health issues or limitations? If I needed more help, who would help me? Who would move in with me? Who would let me move in with them if the time came?

These are all very important conversations to have with yourself, but also the people in your life regularly, because it's important to have plans A, B, C, and everything else in place ahead of time. It can take a lot of stress off yourself and your loved ones when you're in times of distress in the future. Along those lines, if you find it difficult to start initiating these conversations with your family members, please call on your healthcare team. We are here to support you, especially your social workers and nurses, so we can help guide you through these conversations and sit down with those family members and lead them with you.

Emily Hall 1:18:30
Also, in planning for the future, it's important to look at transportation because if you can no longer drive, or your care partner can no longer drive, or car transfers are no longer safe, what are your options?

For the VA beneficiary travel program, a consult can be placed. Typically, it's placed by your primary care provider annually. There does have to be a medical justification as to why you cannot drive.

It's for veterans who are rated at a 30% to 100% service-connected disability. They can also be eligible if they're non-service-connected and they're also receiving a non-service-connected VA pension benefit. If they are non-service-connected or they are zero to 20% rated service connection, they have to complete a 10-10EC form and be eligible based on income. It can get a little complicated, which again, this would coordinate through your primary care doctor and your social worker to see if you're eligible for travel through your local VA.

If you're not eligible for travel, then you'll work with your social worker to see what other options there are for you. What's great about this program too is that you can specify in the consult if you want to have a caregiver ride with you. That way, your caregiver is still coming with you to those appointments as well.

Other options for transportation are Medicaid, if you're approved. Some insurance plans offer transportation, but you have to check specifically with that plan, like some Humana plans do, Anthem HealthKeepers Plus. Again, you need to check. Local areas on aging, some of them have transportation for seniors or for those who have disabilities. Local city or town or county transit may also have senior wheelchair van options. Then there's a VBA auto grant. Again, we recommend speaking with a VSO to see if you're eligible, which also depends on your service-connected disability rating conditions as well.

Again, with advanced PD, traveling to and from home to clinics for appointments may become very difficult for the person with Parkinson's and their care partner. While most people only recently discovered Zoom, Teams, webinars, remote, and virtual opportunities, VA has actually been leading telehealth since 2003. We've been doing this for 20 years now. Appointments are held via what we call VVC. It's called VA Video Connect.

It can be connected, it's an application, so it can be connected through personal smart devices, phones, tablets, laptops, computers. If veterans do not have a smart device and have difficulty connecting, or don't have the resources to afford one, they may be able to apply for a VA loan device, which is an iPad to use for these appointments.

Telehealth is a fantastic option for connecting with providers, especially within our clinic specifically, when we have physical therapy, occupational therapy, and speech wanting to see patients multiple times a week. Especially if they're in SPEAK OUT! and then they're in a SPEAK OUT! group that meets every Monday. Rather than having to come to the hospital multiple times a week, they'll be able to meet virtually or meet virtually using the VA-issued iPad as well.

Home-based primary care is also an amazing option if you have to have medical primary care services in the home. This includes primary care, nursing, social work, rehab, which at RVA is an occupational therapist typically, psychology, nutrition, and pharmacy with wraparound services. They also have interdisciplinary team meetings similar to our PADRECC team.

All veterans are eligible if they meet clinical need for services, but there is a limitation on mileage from a VA clinic or facility, and there can be waitlists sometimes to get into this program because it is so popular and so needed.

Emily Hall 1:23:14
I would check with your local facility for eligibility and how this process works. For Richmond specifically, and it's likely this way for all VAs, a referral to the geriatric evaluation clinic has to occur first, which is a comprehensive evaluation completed by a geriatrician, which is essentially a medical provider who specializes in geriatric medicine.

A nurse and a social worker, with the goal of creating an interdisciplinary plan of care involving other disciplines, such as a geriatric psychologist, a physical therapist, and an occupational therapist as necessary. The geriatric clinic appointments are typically about 90 minutes and can be scheduled face-to-face or virtually. It's a specialty clinic evaluation, and then they may follow for time-limited management. But the veterans would remain assigned to their primary care team in the PACT clinic unless they end up getting referred to home-based primary care.

Primarily, some of the patients that get referred to them from PADRECC are patients that are in advanced PD stages that are really having difficulty getting to appointments, where their dementia or their cognitive functioning is really declining, where they're having a lot of falls, where they're becoming much more bedbound, wheelchair-bound, where there's a lot of travel burden.

Unfortunately for RVA, they have to be within that 45-mile radius, either from Richmond VA or one of our community clinics. That's something that we take into account as well when we're making referrals.

Skilled home health can also be coordinated by the VA as well. This includes your PT, OT, nursing, speech, wound care, sometimes IV antibiotics. These are provided by a community agency that has a contract with the VA. They will bill your Medicare first unless you specify or request for them to use VA pay. If a veteran is non-service-connected, they may require a copayment for services if you do use VA pay, which would require the 10-10EC form, which is at the end of this presentation. Again, these are designed to be short-term services.

Now, the Homemaker/Home Health Aide Program is very popular, but it is also a very great benefit that is available through most VAs and very important for our patient population. It's a program provided by an external agency that is set up by the VA. It's when an aide, which is a trained person, can come into the veteran's home and provide personal care with their daily activities, so your eating, dressing, grooming, bathing, toileting, mobility transfers, grocery shopping, to help them remain in the home and prevent nursing home placement.

The services may vary by VA location. Eligibility is based on clinical criteria, meaning that the level of need required is based on an assessment completed by the Geriatrics and Extended Care Team. A copayment might be charged based on your VA service-connected disability status, which again is based on that 10-10EC form, so somebody is non-service-connected or if they're zero percent.

In order to be eligible for this program, typically you have to have a VA primary care provider or have a community care primary care provider that has been arranged by the VA. If you have questions about this or eligibility, again, I highly encourage you to reach out to a social worker at your local VA to discuss further and see how the process works.

I know how it works at our VA, but sometimes how it works at other VAs, there can be small steps that are a little bit different. But every year they do ongoing assessment and reassessment to see if the number of hours, if there needs to be a reassessment to try and get more hours or not. We will preface with saying the VA cannot provide 24-hour in-home care. It's just not feasible with the amount of veterans that we have and the amount of care that needs to be provided.

They will try and provide as many hours that they can, but it's provided on a weekly allowance, meaning that they will say this is how many hours that they will authorize per week. If a veteran maxed out how many hours they can provide on a weekly basis, sometimes what our caregivers will do will then pay out of pocket for a few more hours with that agency or another caregiver that they know.

Crista Ellis 1:28:42
Emily, in the interest of time, we're at 5:30. If you would just kind of go through what we have left here pretty quickly, and we have a couple of questions we'd like to get to.

Emily Hall 1:28:53
Yeah. This is the Veteran-Directed Care program. It's very similar to the Home Health Aide Program. Again, this is not available at all VAs. It's very great in that it gives a little bit more autonomy to allow a veteran or family member to hand select caregivers. I would verify with your VA if this program is available or not. VAs also have palliative and hospice care available. Again, I would check with your VA in terms of availability of CLC, and I'm sorry for speeding through this. There's just so many resources.

I'm going to get more into the long-term care because I think that's important. So I'm going to do respite and long-term care. Respite is a great VA benefit that's available, especially for caregiver burden. The options are in-home respite, which is to supplement someone who's already receiving home health aide hours. There's also an option for nursing home respite, and you have 30 days per calendar year that's available to a caregiver. These are either available in a contract nursing home or a community living center at a local VA.

You will need to verify with your local VA if a CLC is available because, for example, in Richmond, a CLC is not available as an option. It's only available through CNHs.

Adult day programs are also an amazing respite option. That also provides socialization. Please check with your local VA to see if this is a program that is operating. It still varies from VA to VA, but it's a great way to try and age in place and avoid nursing home placement. It's a great way to give structure to a veteran, especially if they have a little bit of cognitive impairment and need some safety supervision, but also that socialization.

We also have two different caregiver support programs. There's an entire department dedicated to it at the VA. There's the General Caregiver Support Program, which anyone of all eras can be eligible for. I've included in here the National VA Caregiver Support Line. If any of you have any questions about what caregiver support programs are available or, at your VA, who is the caregiver support program coordinator to call, I highly recommend calling that number so you can get connected and get that information.

This is the program that is most popular and typically elicits the most questions. I'm not going to go over all of this because it has a lot of content, but this is essentially the paid stipend program that a lot of people ask for and have questions about. The application can be completed online, or it can be completed by paper and turned into your local facility. But it also has access to some more available benefits for the caregiver, including the monthly stipend. Please note enrollment in this will impact any hours that you might be receiving if you have home health aide or Veteran-Directed Care program hours.

The next couple things I'm going to go over very quickly because not all VAs have them available. You will need to check with your local VA to see what you have. Again, I highly recommend talking to a social worker. CRCs are a great alternative to nursing home care. This has to be paid for out of pocket, but it's much cheaper than a nursing home. It's a little bit more similar to an assisted living-type setting. It's coordinated and has some oversight from the VA. There's a social worker that manages the program. It's for veterans who can't live alone and need a little bit of supervision and support with their ADLs.

Emily Hall 1:33:05
Medical foster homes are another alternative to nursing home placement. Again, it needs to be paid for by the veteran. When we mean paid for, typically these are veterans who are receiving service-connected compensation and Social Security. Between all of that money, typically they are able to afford these on their own, and these are typically designed for patients who don't have much of a support system, or their support system doesn't live anywhere near here and they need more help. Again, recommend contacting your local facility.

Group homes are another option for those who don't have a very big support system. This would be the lowest level of care, meaning that it's more supervision level. They can help a little bit with daily activities, but sometimes they may call the VA and request a homemaker or home health aide consult as well. Again, the VA does not pay for rent. Assisted living and memory care are also amazing options. Again, the VA does not pay for either of these.

They are amazing options to look at if you have the finances to afford them. A Place for Mom is an amazing free service that we utilize here in Richmond often. I'm pretty sure they're available nationwide. They can work with you and your finances and look at exactly what you're looking for and see if assisted living or memory care is for you.

Continuing care communities, again, are not specifically a VA benefit, but if you have the financial resources, something that I would recommend just looking into. It includes independent living, assisted living, memory care sometimes, and health care. It essentially has everything included. You're still aging in place, per se, in one spot, but it is expensive.

Contract nursing homes through the VA, we've already talked about the eligibility behind it. This is also where, if veterans are on hospice, they can also stay here to have their hospice care services, regardless of their service connection level. Clinical eligibility, they have to need assistance with three or more ADLs. They can't just need a place to stay, essentially. Each VA has their own list of contract nursing home placements. Again, I highly recommend contacting your VA to know the updated list, as this changes very frequently, but you have short-term rehab available there and long-term care.

State veteran homes are amazing options if you are eligible for this as well. You can look this up online to see what state veteran homes are available for where you live. These are the ones that are available here in Richmond, and they are trying to build more across the country, but they are not owned and operated by the VA; they are state-run. They are amazing because they are all veterans that live there. They are typically pretty nice places to stay, lots of visitors, just amazing places if you can get in there.

I will say the waitlists to get in there are typically very long. We always recommend to individuals that if you are interested in going there, put your name on the list because the application process is also very long. These are just some information on your regular nursing homes. I recommend that you look on medicare.gov to do your own searching and talking to people about their experiences to find a good place.

These are some important forms to know and have in case you ever need them. When we're talking about them in these presentations, this is what we mean.

Again, when contacting your local VA, if you have a primary care doctor, they almost always have a social worker that works with them, or at least know a social worker to call. Please ask for their contact information or ask for a referral to a social worker, and they can help connect you to a lot of these resources at your specific facility. If you are connected to a neurologist or a movement disorder specialist, they usually also know a social worker available.

These are the big takeaway points from today. I know we had to rush through the end of it because there's just way too much here. But just being open and honest with your providers. Palliative care is an amazing service. I highly recommend anyone experiencing Parkinson's disease or some of the latter stages, if you're on the fence about it, just do it. Just ask for a referral. It's meant to aid you in your disease. It's not meant to harm you.

It's just another person to have on your team to help you through this process and help your caregiver. Advance care planning is important, and please, please, please talk to a VSO and listen to Gretchen Glenn's webinar that is hosted. Here's my contact information too. If you have any other questions come up or need me to help dig anything for you, I can try.

Crista Ellis 1:39:02
Right. Thanks so much, Emily. On behalf of us at the Parkinson's Foundation, thanks so much for putting all of this information together and sharing your time with us on this Thursday evening. It really means a lot to the Parkinson's Foundation and to our community who are veterans living with Parkinson's disease.

Another shout-out to our viewing parties, which include the Parkinson's Group of the Ozarks, the Cincinnati Music and Wellness Coalition, the Cicero American Legion, the Katz JCC, the West Morris Area YMCA, and the Friedberg JCC. We'd love to know where everyone who joined us from the watch party is joining from. Say hi in the chat.

Please know that today's event has been recorded. You will receive a link to view the recording as well as Emily's slides, which will have active links where you can access those webpages, those phone numbers, whichever may be resonating with you at this time.

Join us for our next webinar for environmental exposures in veterans with Parkinson's on December 14. You can learn more about our veterans webinars and register to attend at Parkinson.org/Veterans.

I'd like to bring some awareness to our upcoming Care Partner Summits. This year, we are hosting six Care Partner Summits, five in-person regional events followed by a live-streamed national webinar. You can see the location there on the left side of the slide.

The topic and objective of this year's summit is addressing difficult conversations and having true peer-to-peer connection. We heard that our care partners really desire to feel supported and connected to other care partners, and our intention with this year's summit is to offer the knowledge, time, and space for application of skills and tips they will learn about and sharing with their community members. You can learn more about the Care Partner Summit by visiting Parkinson.org/Summit.

If you had a question today that was not answered, please reach out to our Helpline by calling 1-800-4PD-INFO, or you can email us at Helpline@Parkinson.org. You can use that same contact info to order our free resources, educational book series, and our hospital safety kit. We thank you for joining us today, and we hope to see you in Zoom land again soon. Be well.

Emily Hall, LCSW
Southeast PADRECC Senior Social Worker
Central Virginia VA Healthcare System