Understanding Common Misperceptions of Living with 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+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome back, everybody, to the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I have prepared for everybody today another brand new episode that I'm really excited to share with you. And what I'm talking about today is Understanding misperceptions living with dementia, and there are a lot, trust me. So I'm going to start off by saying it is not uncommon for people living with dementia to experience changes in how they perceive things. This is not just about memory loss or short-term memory loss. And when we're— our brains are healthy, we understand things that in the worlds that we live in through our 5 main senses, which are hearing, sight, smell, taste, and touch. And these senses collect information and send it to our brains, which uses it to make sense of the world around us. Now, in some people who are living with dementia, their brains actually start to misinterpret the information that's being fed to their brain regarding their 5 senses. This is actually a thing known as changes in perception. And leads them to misunderstanding the world around them or experiencing reality different from people with healthier brains. Now, people living with dementia may also experience hallucinations. You've all heard me talk about my very first experience with my grandmother, and one of the things I was witnessing that day was her hallucinating about seeing rats running around her home. Now, this is actually pretty common in a lot of people who do live with one of the brain diseases that causes dementia. Changes in their perception can also happen because of physical changes in their brains or to their sensory organs. So let me give you an example. People's vision and hearing often get worse as they get older. We all accept that. But certain types of dementia can also cause changes in our vision. And then changes in perception when we lose some of these cognitive functions include misperceptions, misidentifications, visuospatial difficulties, Misperceptions happen when a person sees one thing as something else. For example, they may see a reflection in a window and believe there's an intruder in their home or in a mirror. Misidentification happens when the person has problems identifying particular objects or particular people. Let me give you an example of what I'm talking about there. They may mistake their own daughter for their wife. This happens pretty commonly. I've seen it a lot in the last 30 years. And what causes these changes in perception is due to visuospatial difficulties that happen when the brain has trouble processing information about three-dimensional objects. Like a person might misjudge the depth of something, speeds, or distances, which could affect their driving, for example, and their ability to move around their home safely or their environment safely. So what are hallucinations? Well, they are sensory experiences that appear real to the person but are created by that person's mind without any external cause. And this leads them to experience something that's not really happening. Hallucinations can involve any of the senses, but the most common are visual and auditory hallucinations where A person sees things, like my grandma saw rats, or hears things that are not really there, like a person, an animal, or an object. Now, who do changes in perception affect? Well, changes in perception, and less commonly hallucinations, can affect Anyone who has physical changes to their sensory organs, their brain, or both. They are common in people with dementia as they may experience changes to their sensory organs as well as damage to certain areas of the brain. So if there is damage, for example, to the occipital lobe, which is the rear part of the brain, which is responsible for processing visual information, that person may actually end up having difficulty making sense of what they see around them. Now, changes in vision are more prevalent in certain types of dementia, so understand that even if the eyes themselves are healthy. So some of the other brain diseases that this can occur in are Lewy body dementia, which can cause visual hallucinations. Alzheimer's disease, that's what my grandmother had, which can cause loss of peripheral or side vision. Vascular dementia, and this often results from either a regular stroke or a mini stroke. Which is also known as a transencephalic attack, little mini strokes, and can cause difficulties such as having double or blurred vision or even partial or total loss of sight in one or both eyes. There's also posterior cortical atrophy, sometimes referred to as PCA, which is actually a rare form of dementia. That mainly affects younger people under the age of 65. And therefore, it is helpful for the person with dementia and their family to be told what form of dementia they have been diagnosed with. If it is a type that is known to cause changes in perception and visual disturbances, then knowing what type of brain disease they have can help the person and those around them understand why these changes are actually happening and can, can go ahead and make allowances for them and develop coping strategies. The challenge is a lot of these brain diseases are not easily diagnosed. So it's really a process of elimination for our physicians to try to determine what's not causing our symptoms and actually pinning it down to an accurate diagnosis. Changes in our perception can also affect people who have sight or hearing problems caused by physical issues with our eyes or ears. Delirium caused by an infection or side effects from medications. People who overuse alcohol or take illegal drugs may be more prone to changes in perception as well. It can be extremely difficult to know if a person with dementia is experiencing changes in their perception and hallucinations. Now, signs that this might be happening include saying or doing things that suggest that they see or hear things that you cannot. Or maybe you notice that they're bumping into things or having frequent trips and falls as though they are really struggling to see the objects that are around them. Another thing that occurs is not recognizing where they are. It's not familiar to them. Displaying changes in behavior that may indicate fear or distress. Becoming more socially isolated is a huge sign. Reacting to or looking startled by things that you cannot see. You might notice that they're muttering under their breath. Or speaking as if they are responding to something that you can't hear. Some people start plucking or picking at their skin as if they itch, or they start reaching for items but they miss them, or putting things down in the wrong place, like putting a cup down but missing the table, trying to pick things up out of thin air, but that object isn't even really there. So here's some ways that we can avoid visual misperceptions. And this is your loved one or a person that you may be caring for. You can take that person for regular eye tests. If they wear glasses, make sure they are clean and that they fit properly and that their prescription is up to date. Eyesight changes. Cover any mirrors or turn them around to face the wall because people with dementia may and do misinterpret reflections in mirrors as other people in the house. It'd be terrifying for them. Move objects that could be mistaken for a person, such as a coat stand, for example, could appear to be a person standing where that coat stand is. Uh, dressing gowns or coats hung on the doors present problems, and prevent reflections from windows or blinds. Or curtains. Avoid busy patterns on carpets or tiles, and if possible, try to avoid changes in the levels of the floor, and I'll tell you why in just a few minutes. For example, thick carpets to wooden floors, which might be difficult for a person with dementia to see. Make sure their rooms that they're in and out of are well lit. You can use contrasting colors to make objects stand out, such as block-colored plates, brightly colored towels that are easier to see when hanging on a towel rail against the wall, or a colored toilet seat that stands out from the rest of the bathroom so they don't miss. People with dementia often find it easier to see blue than red, which is a very interesting Fact. Now, caring for a loved one with memory loss certainly presents unique daily challenges for everybody concerned. Now, you might notice a person that you're caring for hesitating at a dark rug or even struggling to find the bathroom door. Any of that sound familiar to you? Well, these behaviors offer often stem from hidden visual changes in their brains rather than just sheer memory loss. So understanding why certain shades trigger confusion in people with dementia can dramatically help improve their daily safety and overall comfort. Now understand that as the disease progresses, The brain processes colors, contrast, and depth differently. Poorly contrasted spaces easily blend together, making navigation somewhat terrifying at times. Contrast sensitivity sharply declines as dementia progresses, and when colors lack strong contrast, objects completely disappear into their background. Let me give you an example. A white toilet against a white bathroom wall literally becomes invisible to that person living with dementia. Here's another one: a white plate on a white table makes the food nearly impossible to distinguish which often leads to frustrating weight loss. And the illusion of dark colors, like darker shades like black, navy blue, and deep brown, actually can create frightening optical illusions for the person living with dementia. I don't know if you've ever heard of the black hole effect. Yeah, that's a real thing. It can be represented by a dark rug on a light floor and may look like a deep pit to the person with dementia. People will often stop walking or try to step over it because they think they're going to fall into a hole. Shadows as objects. So where that comes into play is that dim lighting creates dark shadows that a person might mistake for intruders or even obstacles in their way. Spilled liquids, darkly colored drinks might look unappealing or unrecognizable, leading to dehydration. They just don't wanna drink it. So here are some simple fixes to improve daily living. You can greatly reduce anxiety by making strategic visual changes around their home, around your home, around their environment. So here they are. Using bright, highly contrasting colors will help your loved one navigate their space much safe— more safely. Swap the rugs out. Remove all dark-colored floor mats and replace them with solid, light-colored flooring, which can help prevent trips and falls. Use colorful tableware. Serve meals on bright red or yellow plates and make sure that the color contrasts with the tablecloth or the placemat. Now, strong contrast helps patients or people with dementia see their foods more clearly and eat both the— as a result, they will eat more independently. So here's a highlight of some key areas that you can do something about, you can control. Paint the bathroom door a bright contrasting color so it stands out easily from the hallway walls. Improve the lighting in the environment. Keep rooms brightly lit to eliminate confusing shadows on the wall and the floors. You can create a safer environment today by making small environmental changes because, trust me, they make a massive difference in a person's quality of life. By recognizing how visual processing changes, you can remove unnecessary stressors from their daily routines. People with dementia may also mistake shiny floors for wet surfaces, surfaces, or even puddles on the floor. That's pretty amazing, but it's true, causing hesitation or fear of walking on them. It's also a safety hazard. They may also mistake patterned items. Now here's an interesting one. They can mistake pictures of fruit that are embedded in a tablecloth for real objects due to their visuo-spatial dysfunction. And their memory loss, where the brain misinterprets two-dimensional images as three-dimensional reality. They might try to eat that fruit, pull it off the tablecloth and think it's edible fruit. These are actually some very common misinterpretations. So I already talked about the shiny glossy floors interpreted as water, ice, or a slippery puddle leading to refusal to walk or trying to dry it. The dark rugs or mats being mistaken for a deep hole, a void, or an abyss. Patterned tablecloths, pictures. Picture of fruit may be treated as actual food to be eaten up or picked up. And then reflective surfaces. Mirrors or windows. This is very confusing for a stranger in the room. That's what they're confusing them for. It can be very frightening or intimidating. Blue-green rugs can be perceived as water or grass. Now, why they mistake patterns for real objects. There's something called agnosia, and that causes brain damage that affects the ability to recognize or identify familiar objects even if they can see them. We talked a little bit about visuo-spatial impairment, which is difficulty processing where objects are in space, or distinguishing between two-dimensional and three-dimensional objects. Two-dimensional being a picture of something and three-dimensional being the real object. Pareidolia— this is the brain's tendency to interpret random shapes or patterns as being meaningful, familiar objects, which can become distorted under stress. Semantic dementia. This means that specific degradation in the brain's temporal lobes can result in losing the knowledge of what certain items are. Now, to reduce anxiety, it is recommended to use matte finish flooring, remove dark rugs, and keep the tablecloths plain and simple, like one solid color. Did you know that dementia can not only bring visual challenges? The problem within the brain that cause memory loss can also affect their sight, and this, coupled with general age-related eyesight deterioration, can make it increasingly difficult to discriminate different textures on the floor. That explains why shiny surfaces can appear to be wet and dark surfaces can look like holes. Floor patterns such as those found on linoleum or carpet can cause illusions while visual spatial problems mean rooms can appear flat or two-dimensional. So here are a few things to consider. Patterned flooring. Why? Because patterned carpets can cause confusion if you have dementia, as it does become increasingly difficult to distinguish between design and actual objects that they need to pick up or step over. For example, A dark carpet with white specks may look like bits of tissue, which they will keep trying to pick up off the carpet. Patterns such as flowers can also be deceptive, as they could literally believe they're actually seeing real flowers sprinkled around the floor. Similarly, If kitchen linoleum or bathroom tiles are in a black and white checkerboard motif, the black areas may seem like holes in the floor which need to be stepped around. So just imagine how confusing and frustrating that could feel for somebody. So pros and cons of using contrasting colors. Visual problems mean you need to help people with dementia pick out certain areas clearly. For example, if their kitchen has a small step, making it a different color to the surrounding flooring will help them spot that there is a step there. You could actually use different colored skirting boards to pick out the edge of, of a room and help give it more perspective for somebody living with dementia. And likewise, picking out furniture in a color that contrasts with the flooring, for, for example, that will make it easier for somebody living with dementia or Alzheimer's to be able to see it. But color contrast can also work against you if they make the person you're caring for think there's a step or hole where there really isn't one. So make sure that threshold strips, which are the strips of metal or plastic that fix flooring between different rooms, are the same color as the rest of the floor surface. And if possible, try to ensure that the color changes of floors between each room aren't too bold. Benefits of matte floors: shiny floors again appear wet to somebody with dementia, and this could mean that they'll become hesitant and unsteady, which can ultimately lead to trips and/or falls. So for areas of the house that aren't carpeted, Surface should ideally be matte to reduce the risk of harm. Always remove potential hazards. Falls pose a real risk for people living with dementia, so it's really vital that you move any objects that could cause a tripping hazard. Assess all rooms and move or, um, remove potential trip hazards, including rugs, pairs of shoes lying around, slippers, or low furniture such as coffee tables. And check their slippers regularly. Do you know that more than 27,000 people land in hospital every year because of slip-ups in their slippers? This is a fact. Carpet slippers are one of the one of the biggest causes of accidents in the home every year. And for someone living with dementia, worn-out slippers can be lethal. So make sure they have good grips on their soles and plenty support at the back. The ankle booty type is probably one of the safest, providing they're being put on correctly. So here are ways to help. Take your loved one or the person you're caring for, for regular hearing tests too. If they wear a hearing aid, make sure it is kept clean and well maintained and that the battery is checked regularly. And don't forget, speak slowly and calmly. Face them when you're speaking. Turn off any background noise such as a television, a radio when speaking to them. Changes in perception and hallucinations. Try to avoid sudden loud noises as these can cause shock and fear. Ways to avoid taste misperceptions. Take the person for regular dental checkups. Tooth decay and/or gum disease can create a bad taste in their mouth, which people with dementia may end up perceiving as something being wrong with their food. Make sure the person follows a good daily mouth care routine with support if needed, and check their dentures and their teeth and mouth for signs of soreness, infection, or damage. And ask whether they have any discomfort. Be aware that people's food and drink preferences can and do change when they have dementia and try to accommodate this. For example, someone may suddenly dislike milk in their tea, but they've taken it that way forever. Ways to avoid sense of touch misperception. Perceptions. Look out for excessive itching or plucking at the skin site and try to identify what has triggered this. Find out whether there has been a change in their medication— can cause itching. Itching might actually be a side effect of a new medication. Check if there has been a change in their washing detergent or fabric conditioner, which may have triggered an allergic reaction or a skin sensitivity reaction. And consider whether the person has an allergy to something else in their environment, such as a soap or pet hair. And then assess whether the person is too hot or too cold. Check their clothing to see if that's causing discomfort. For example, their cuffs are too tight. The fabric is rough or scratchy like wool, or seams are irritating their skin. And here are some ways to avoid sense of smell misperceptions. Investigate if anything in their environment is causing a bad smell. For example, the garbage can, rotten food, a pet litter tray, or a cage. People with dementia can misperceive bad smells as something being much worse than it actually is, including believing there's a gas leak. Encourage your person to follow a good personal hygiene routine with assistance if necessary. Consider using mild washing detergents and fragrant free toiletries. Strong smells may overwhelm changes in perception and hallucinations. So that concludes today's episode of The Truth, Lies Alzheimer's Show. Again, I'm Lisa Skinner, your host. I'm so happy you were able to spend part of your very valuable and busy days with me, and I will be back next week. With another new episode for you, I promise. So until then, try to be happy, try to stay healthy, and enjoy the rest of your week. 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 loved one with dementia can be the 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.