Pain in dementia isn't always obvious

This is the Truth, Lies and Alzheimer's Show, and we are brought to you by Global Media Network LLC and Passionate World Talk Radio. Passionate World Talk Radio is a wholly owned subsidiary of Global Media Network LLC, and our motto is to educate, enlighten, and entertain. I'm Ken Poglia, and I'm here to introduce your host, She's an Alzheimer's and dementia expert. She's a best-selling author. She's a world-renowned public speaker. She is Lisa Skinner, and we have a fantastic episode planned for you today. It's a very important topic. Lisa will be discussing how to recognize pain in people in dementia when they can no longer tell you about it. And in Lisa's What's New segment, the U.S. announces a trial payment program for care providers of dementia patients. I can't wait to hear about that, so I'll turn it back over to our host, Lisa Skinner.

Thanks so much, Ken. As he said, and it's so very true, it is a very, very important topic and one that is very difficult for family members, loved ones, caregivers, because people with dementia, as they progress through the disease, they do end up getting to the point where they can no longer articulate their wants and their needs. And unfortunately, this includes telling you when they're uncomfortable or in pain. You know, it isn't always obvious or easy to diagnose. So, I want to share with you a really fantastic article that I found at the website dailycaring.com on this very topic. Seniors with dementia often experience serious discomfort on a regular basis. Their pain can be caused by health conditions common among older people like arthritis, constipation, recovering from a surgery or a medical procedure, injuries due to falls or accidents, if they have an infection, or pressure sores. However, it is not always easy to know when someone with dementia is in pain. And that's because their ability to recognize what's going on in their body and communicate their needs declines or actually becomes nonexistent. Also, the nonverbal ways they use to communicate pain is often not what we'd expect, so it's very easy to miss or misinterpret there's signs or signals that they are trying to tell you something. Some of the reasons why it's challenging to detect pain in seniors with dementia are an inability, their inability to describe, explain, recognize, or even remember pain. One reason we don't know when someone with dementia is in pain is that they lose the ability recognize or describe what's happening with their body. Even when they're asked specifically, they may not be able to explain how they're feeling to you, where their pain is, when it started, how it feels, etc. And even though they feel and are affected by it, they may not be able to recognize that it's pain that they're feeling. Plus, if someone has problems with short-term memory, which most people with Alzheimer's disease do, they may have forgotten about an episode of pain. So, that really doesn't mean that they're not affected by the pain at that time or that they won't be in pain again, They just don't know how to tell you. Another reason someone with dementia may not say that they're in pain is out of fear. They might be afraid that they would need surgery or a painful treatment, be sent to the hospital or maybe a nursing home, or be given medication they don't want. Another reason is their pride. Even if they can clearly communicate their thoughts and feelings, some people may have grown up with the belief that pain is to be endured silently. I have to tell you, my dad was like that, so I can totally relate to that being a reason. You know, their pride tells them that people should never admit to or complain of pain. Others may think that admitting to being in pain and needing help means that they'll lose respect or independence. I think that was his reasoning behind it. So, common causes of pain in dementia are— and let me just point this out to you— Alzheimer's disease itself. Does not typically cause physically pain— physical pain, but there are many health conditions that commonly affect older adults that do cause significant pain. So, here are a few. Painful chronic conditions like arthritis, gout, diabetic neuropathy. These are all common conditions in our seniors. These all cause ongoing pain, and sometimes it can be extremely severe. Another common cause of pain are injuries from falls, even if there are no visible bruises. Plus, if you weren't there at the moment and they didn't remember to tell you, You may not even know that they've recently fallen. I've seen that so many times. After surgery, older bodies often take longer to recover. So, if we think someone is fully recovered, they actually may still be healing from it and could still be in a significant amount of pain. Infection. Infections and illnesses are common causes of pain, like, for example, urinary tract infections. They can also cause pain and significant discomfort, especially if it goes unrecognized, untreated, and gets into the bloodstream. Everyday issues can also cause significant pain and discomfort. I mentioned earlier, conditions like constipation, or how about an upset stomach? Maybe your loved one suffers from acid reflux. These are all common conditions in older adults as the digestive system slows with age. And one thing that can really cause pain and can be extremely dangerous for our seniors, especially with dementia, are bedsores. If someone has limited mobility, they are at risk for developing bedsores, which are pressure sores. They can progress quickly and become extremely painful. So, How would you find out if your loved one or the person that you're caring for with dementia is in pain? Well, you could try to ask them directly, but most people with dementia really would not be able to tell you. So, if you do ask them directly, just keep couple things in mind. Keep the questions simple and remember that someone may not be able to understand what you're asking them. It's also important to remember that if someone does have poor short-term memory, they might only know if they're in pain at that second. They may not remember if they were in pain in 5 minutes, 5 minutes ago, 5 hours ago, or a day ago. This makes this situation so difficult for our caregivers. Finding out how severe the pain is might be a challenge because they may not be able to describe to you what they're feeling. If someone isn't able to describe or express their pain, please don't pressure them. Asking repeatedly might cause them to become agitated, angry, or upset. But if you know your person well and you're familiar with their typical behaviors, this can actually help you recognize signs that they are in pain, discomfort, or distress. For one person, it could be uncharacteristic angry outbursts. For someone else, it might be unusually quiet and withdrawn behaviors. To recognize signs of pain, think about their typical mood and behavior, how their body posture and movements usually are, And if they're usually return to expected behavior after taking pain medication, and this could be a sign that they are feeling better. Be sure you know their medical conditions as a possible cause for chronic pain. For example, do they have arthritis? Do they suffer from ulcers, from the pressure sores that we talked about? Have they had recent surgery? Do they have any old or new injuries? Do they have that history of constipation, chest pain, migraines, or headaches? Or maybe other ongoing conditions that still cause pain, even if someone loses the ability to let others know that it's happening. So what we need to teach ourselves to do is observe their behaviors. And one thing is for sure, a challenging behavior can often be a sign that your loved one is in pain. I have said this so many times. They are not trying to be difficult. They're trying to tell you something, and that something does commonly manifest itself in the way of a behavior. So, let me give you some examples. Maybe they'll start making sounds like whimpering or groaning. Maybe they will exhibit facial expressions to you like frowning, grimacing, or looking frightened. Maybe crying out or calling out, rocking back and forth, refusing to eat. Becoming angry, aggressive, or combative, or look for clenching fists. That is a common pain reaction. Being especially quiet or withdrawing from activities. Being difficult to please or inconsolable. Showing increased confusion, especially in urinary tract infections. If it does go untreated and gets into the bloodstream, it mimics the signs of later stages dementia. They get increasingly confused very rapidly. As people progress through the stages of dementia, they don't typically happen that quickly. It's more of a subtle progression. So, if it happens really State of confusion happens really, really quickly. You want to make sure that they do not have urinary tract infection. Another thing to look for, having higher than normal heart rate or blood pressure or labored breathing. Try to notice if they're sweating or looking flushed, blotchy, reddened skin, or looking very pale. Maybe they'll start pacing or wandering around, becoming very restless. And then other sign is, believe it or not, repeating behaviors or words. And, you know, we've discussed this before because repeating behaviors or words can mean other things. I mean, they're bored. It can mean that They simply didn't remember that they just said it 20 times earlier. But it also can be a sign that there's something wrong. So, that's what I have for you this evening, I mean, for today's episode in terms of knowing what to look for, how to recognize pain, and If you suspect that they're in pain, the best thing to do is to consult with their primary care physician. So, in our What's New segment, I found a fairly new announcement. The U.S. is going to start a trial payment program for care providers of dementia patients.

Yay!

So this came out July 31st on Reuters. So this is— these are the details. The U.S. government said on Monday it would trial a new payment program for people who provide dementia care coordination services for patients who are covered by the Medicare health plan. The program includes services such as personalized assessment, care plans for patients, as well as 24/7 access to a support line. Medicare said the program aims to delay long-term nursing home care. The Medicare agency's pilot program will test a per-patient-per-month amount payment model for people who provide support services to patients with dementia. The model includes a care coordinator to help increase access to clinical care as well as non-clinical services such as providing meals and transportation through community-based organizations. The program is for people suffering from dementia due to Alzheimer's disease or other causes including vascular dementia, dementia with Lewy bodies, or abnormal deposits of protein inside nerve cells, among others. There are over 100 brain diseases that cause dementia. The federal agency said it will open applications for organizations interested in participating in the program in the autumn of this year. The trial is expected to run for 8 years beginning July of 2024. That is such encouraging news for the number of caregivers, especially the family members who are caring for loved ones with dementia. So help is on its way, so be on the lookout for that. And that's all I have for you on today's episode of The Truth, Lies Alzheimer's Show. Before we sign off, I'm going to turn the mic back over to Ken. He does have a couple of announcements for you. Thanks.

Thank you to our listeners for listening to The Truth, Lies Alzheimer's Show with your host, Lisa Skinner. This program can be found on our website at passionateworldtalkradio.com under the shows tab. You can also search for us on YouTube, and you can find Lisa on Facebook by searching for Lisa Skinner Author. If you're interested in Lisa's books or training programs, you can go to truthliesandalzheimers.com. That's truthliesandalzheimers.com. It's a brand new URL. And everything you need to find out more about Lisa will be there. Lisa's books are also available on all major platforms, including Amazon and Apple Books. Her audiobook of Truth, Lies Alzheimer's: Secret Phases is our favorite of all of her products, so we highly encourage you to check that out. And with that, Lisa, take us home.

Thanks again, Ken. As I always say, and it is so true, and I'm sure many of you already know this, there are so many aspects of living with dementia that are so unexpected and surface out of nowhere at any time. And these are exactly what I call the hidden or secret faces of Alzheimer's disease. As many of you know, they show up unannounced and they are completely unpredictable. That is why it's so important to be prepared for anything that emerges on this journey for you. And I know that knowledge is going to be your power. And that's why I do this show every week. I'm here to arm you with that knowledge so you You too will have the power to negotiate the many challenges you will face having a loved one or while caring for someone with dementia. Living with dementia is unlike anything any of us could ever imagine. Just think of Alice in Wonderland falling into that rabbit hole and entering a world unlike anything she had ever known, one that was completely unfamiliar to her. That said, it's equally important to not only understand what will occur on a day-to-day basis, but why these things occur. We got to connect the dots and see the big picture of this disease. What is happening to the person's changing brain as they progress through these various stages of Alzheimer's disease? If you understand this, you will be able to be prepared for what will challenge you, and that will be the key to being prepared and not being caught off guard. So with that said, I want to thank everyone for being here again today for another episode of the Truth, Lies Alzheimer's Show. Thank you so much for listening. I appreciate you all so much, and we have much, much more to cover in the upcoming episodes. So please join us again, and I hope that the information that I provide for you will help you through your journey and make your life a little easier to bear. So thanks again, and have a great week. As I always say, Dementia awareness happens every day. Kindness is the ability to speak with love, listen with compassion, and act with patience. So, we'll welcome you back next week, and have a great week, and as I like to say, take care of you.

Bye-bye.