Understanding Restlessness in Dementia

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30-plus years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hey everybody, welcome to another new episode of the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and today we are talking about understanding restlessness. And we all know that that people with dementia experience restlessness, right? It includes fidgeting, pacing, and trying to leave the place where they live. Very, very common. Now, this can be extremely upsetting for the person living with dementia, especially if they are prevented from moving around the environment. But it's also quite upsetting for family members and care partners who may worry about the person's well-being and, of course, safety. Restlessness can occur for many, many different reasons, so I'm going to go over those with you. Perhaps they're hungry or thirsty. Now, people with dementia forget to eat or drink. They don't realize they are hungry or thirsty, or they may not recognize the signs of hunger or thirst. So here are some tips that might help. Offer smaller portions or snacks like finger foods if the person does not want to eat their full meal or they're resisting even sitting at the table. Make sure there is always a drink close at hand and encourage them to take sips. They may not voluntarily do it, but sometimes, you know, with prompting, they will go ahead and take the sips. Make sure that you keep caffeinated drinks to a minimum. As these may increase their restlessness. And in the later stages of dementia, when chewing and swallowing may be affected, use ice chips or artificial saliva to stop the person's mouth from becoming dry and uncomfortable. They may be too hot or too cold. You always want to check the temperature in the room. Help them choose appropriate clothing for the weather. I've seen this so many times. They often underdress or overdress because they don't really pay attention or they're not cognizant of the weather. So giving them an either/or choice can help here with, you know, do you like the blue blouse or do you like the yellow blouse? People with dementia sometimes get confused about what they should wear and what's appropriate for the weather of the day. They may be in pain. Pain is a common reason for restlessness. So think about what might be causing the person their discomfort, especially as many people with dementia also have other conditions alongside the dementia, like arthritis, joint pain, heart conditions, stomach or bowel problems. They, they often suffer from dental issues. Maybe they wear dentures and they're, you know, not fitting them properly, or they have a cavity that's causing them pain. So it's always something to check out. They may be experiencing bladder or bowel problems. So encourage your person to eat a balanced diet with plenty of fruit and vegetables and regular drinks, and encourage them to move around and not stay sedentary, if that's possible, to prevent constipation. Look for signs of problems like a urinary tract infection, or if they seem to be constipated. For example, they're needing the toilet more often, or pain when they are passing urine or opening their bowels. So definitely consult with the physician if you're noticing any of those signs. And also what is helpful is ask the person on a regular basis if they need to use the toilet. And then support them if necessary. They might need help locating the bathroom, for example, especially if they're in an unfamiliar environment or if all the doors in their home look similar. This is a big one. They may simply be bored. So support your person with dementia to have a change of scenery. You could go out for a walk, sit in the garden, play some familiar music as you walk around the home together, or just move to a different room. That's a change of scenery, right? Find meaningful activities that you can engage with one another in. This could be anything from voluntary work in the early stages of dementia to helping in the garden or the kitchen, doing jigsaw puzzles, or just simple crafts. Baking is great, then you get to eat the treats. Encourage visits from friends. And of course family. But do be aware that some people with dementia may be unsettled by unexpected visitors. It may be best if people do not drop in without advance notice. And then, of course, before you even open the door, let your person know, oh, Julia's here. Yay, she's come to visit. Let me go let her in. Is that okay with you? Look for new opportunities for social contact and mental and physical stimulation, like support groups for people with dementia and their care partners, day centers, memory cafes, and singing groups. They may also be feeling anxious and in distress. It is often thought that people with dementia do not experience anxiety or depression. Oh, we know that's not true. But this is absolutely not the case. They may just not be able to express how they truly are feeling. So here are some tips that may help. If the person is unfamiliar with their surroundings and this is making them feel anxious, try returning them to a familiar environment. Ask the person how they are feeling and listen carefully to their answer, even if they cannot fully express their emotions, being asked may end up validating their feelings and ease some anxiety. You recognize that something's wrong and you're offering help. Try to establish if something in their environment is causing their sudden anxiety, like loud noises, like someone doing some kind of a project outside, strong cooking smells, or even bright lights trigger anxiety. And remove the source of distress if possible. Remove the source of distress or remove the person from the source of distress if you can't remove the source of distress. Check their clothing for sources of irritation, like a scratchy label. Sometimes we wouldn't even think about that, or a tight waistband. They're uncomfortable. Simple fix. And then sit close to them, hold their hand, stroke their arm, or give them a gentle hand massage to provide reassurance. Playing music is such a relief for anxiety, for calming, for comfort. You can read to them, watch a film together, or look at photos and tell stories. Give them something comforting to hold. Like a cuddly toy or soft blanket, something that is familiar to them. They recognize it. And if there are children or young people in the home who are becoming too noisy, encourage them to do something quiet in another room or use headphones when listening to music or playing video games. So here's a tip of what to do when somebody is moving around. They're just kind of walking around. So pacing, we call this pacing. It's very common in people living with dementia. And there's several different reasons why they're doing it. This, one of them is that this is a self-soothing soothing behavior, but it can be upsetting for both you and for them. However, there's always a reason for it, even if the person cannot identify or communicate it. So here are some thoughts: spending a lot of time inside sitting down can cause frustration, especially if the person is younger and used to be being active. So it's okay to let them walk around as long as they are not in any danger and it is not causing distress. You may need to walk together to ensure that they remain safe. Make the person's home environment as safe as possible to prevent any risk of falls, for example, by tucking trailing wires out of the way, removing rugs, or using grippers to secure them. Also consider fitting handrails on steps. Also check that the person's shoes and slippers are sturdy and well-fitting. This is a huge cause of falls, ill-fitting shoes and slippers. And then try to establish whether the person has an unmet need that they're trying to communicate to you that you can help them with. For instance, they may have stood up to go to the bathroom but forgotten why they got up, so you could assume that that might have been the reason and start escorting and guiding them over to the bathroom. And they may give you some kind of indication that that's not where they want to go, or it is where they want to go. They may have been sitting down for too long and need to stretch their legs or simply feel at ease just by moving about. So coping with wanting to leave the home. This is a big thing. A particular worry for many families is the person with dementia wanting or desperately trying to leave their home. This may happen if they are unaware of the risks of going outside alone, or if they are confused about the time and place. And here's an example. They may be retired, but they could still think that they need to go to work or that they need to pick up their children from school, even though they are older adults. Maybe their short-term memories have short-circuited on them temporarily, and they're back to when they were an active parent. And it's time to go pick the kids up from school. They may have become disoriented and not recognize that where they are is their current home. They're looking for something that is familiar to them, and this home is not for a variety of different reasons. They may be thinking about somewhere that they lived in the past and they want to get back there so they will again feel safe and secure. So the following tips may reduce the person's desire to leave the current environment. You could put the coats and bags away in the cupboards rather than keeping them near the front door. For some people, seeing these items makes them think that you're about to go somewhere and they're anxious to go. I think that stands to reason. Hang curtain rails above the person's front door and pull the curtain in the evening or at other times when they often try to leave the home. Hiding the door may stop them wanting to open it. You can do this with murals. There are stick-on murals that are available on Amazon. And once you put them on the door, they look like a bookshelf. There are several different scenes that they make them in, and then they won't recognize it as an exit and try to open it. That's a simple fix. Involve the person in an activity like gardening, watching a sport on TV, or helping prepare a meal. Help them feel like they still have a purpose and meaning. This can make them feel so included and purposeful and also distract them from wanting to leave the scene, keeping them busy. Ask the person about the place they want to go to and listen carefully to what they say. Speaking about their memories of important places may help them feel reassured and less restless and also reground them in the correct time and place. And then if possible, give the person opportunities to leave the house safely with you or another family member or friend for support. And I'm gonna just close by saying that it is very important to have a plan in case the person with dementia does leave their home alone when it is unsafe to do so. You could talk to their neighbors about the situation. And exchange phone numbers so they can contact you if they see the person leaving home alone and are worried about their welfare. And I'm going to share a quick story with you. This happened to my mother-in-law. She lived in her home for 40, 50 years, and one of her habitual routines was to take her dogs out for a walk every morning. Well, she had been diagnosed with dementia, but at the time we weren't aware that it was further along than it actually was. So this one particular morning, and it turns out my sister-in-law had just moved back into the home to help care for my mother-in-law because my father-in-law had passed away. So my mother-in-law was completely alone. Well, she went out to take the dogs for a walk and she got halfway down her usual route and her short-term memory failed her, just kind of short-circuited. She didn't know who she was. She didn't know her name. She didn't know her address. She didn't know how to get back to her home. And one of her longtime neighbors noticed her just walking around looking really confused. So she went out and said, "Mary Ann, can I help you with something? Is there anything wrong?" Mary Ann didn't know to tell her her name. She could not remember. Well, fortunately, the neighbor had her home telephone number and called, and my sister-in-law Alice answered the phone. And the neighbor said, "I've got your mom here with me and she seems so confused. She doesn't know her name, where she lives. She can't tell me an address. She can't tell me anything. So I'm going to bring her home. I just want to make sure you're there." And my sister-in-law never let her take those dogs out for a walk by herself again. And my point here is it can happen like that, out of nowhere, with, you know, just completely unexpectedly. So we need a plan for things like that. And there are resources out there that can help. There's a Return Home Safely program in most of our communities where you register your loved one with the police and they have the information. GPS trackers are really effective. But anyway, I just wanted to, to point this out because it is definitely part of the restlessness behaviors that we see with dementia. And once they are determined to get out, they're gonna go to extreme lengths to try to get out of wherever it is they are feeling insecure and unsafe about. So that concludes our episode for today. I hope this has been extremely helpful and valuable for you and that, you know, you've learned some new nuggets today to help with your dementia journey. And I will be back next week with another new episode for you. But in the meantime, have a great rest of your week. Thanks for tuning in to The Truth Lies in Alzheimer's Show. I'm Lisa Skinner, your host. And as I always say, please be happy and try to stay as healthy as you possibly can. We all need you. So bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a Caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.