PATIENCE: People who have LBD move very slowly. They also usually operate on a different clock than we do. Slowing down and moving at their pace will make a world of difference to both of you.
This page offers help on many topics so please scroll down to find excellent information on daily activities such as BATHING, EATING & SWALLOWING, TOILETING, WALKING (with walkers/rollators), helpful SUPPLIES, and a suggested FIRST AID KIT.
ASSISTANCE WITH DAILY ACTIVITIES: Occupational Therapists can help patients with everyday functions such as washing, finding clothes, dressing, using toilet and structuring a daily schedule. They can also train care partners and aides to adhere to this daily schedule and to help people with these activities. This also helps individuals retain a sense of independence and autonomy. See below for some tips on help with daily activities.
The following link from ThisCaringHome.org gives excellent advice on the “7 Steps to Better Bathing.” You can click on each number for many details:
More helpful advice is below from the National Institute of Health. Note that this document pertains to people with Alzheimer’s but many of the same steps can be used for people with LBD depending on the stage of the illness.
When giving showers or bathing– examine the skin thoroughly for bed sores, rashes, discolorations, swelling or edema. You want to prevent these from getting any worse and you should mention them to your doctor or nurse asap. These can also possibly be signs of other medical conditions.
Dressing (help with) – Keep it simple using monosyllabic and consistent prompts in the same order such as: “Right hand up” and then “Left hand”. Patient should wear clothing that is easy to put on (should not be too tight)
Labeling: Label drawers, cupboards, doors
Eating & Swallowing
1) Tips for helping people to eat and 2) healthy eating suggestions
WATER is needed throughout the day to help prevent constipation, dehydration and to plump up veins for blood drawing, I.V therapy, etc.
Below are some eating tips from the Alzheimer’s Reading Room
As cognition issues progress, it may be difficult to encourage a person to eat a healthy meal. One important thing you will need to consider is if the person is unable to eat—if they are finding it difficult, painful, or impossible to swallow. You should speak with your physician to arrange for a qualified speech pathologist to access the person if this is the case.
In a study conducted at Boston University, researchers found that patients eating from red plates consumed 25 percent more food than those eating from white plates.
Utensils. At some point, the person may have problems using forks, knives, spoons, etc. If so, consider trying finger food like chicken strips, fish sticks, hamburgers, and shrimp.
Make eye contact while eating. If possible sit directly in front of the person and make eye contact with them and smile before you start eating. Then start eating without talking. Hopefully they will follow your lead. Be patient as you might have to do this for a while before it starts working. Get the smile back.
Arrange the food on the plate. If the person is having trouble eating, less food (portion size), and less items (one or two food choices) will be most helpful. In addition, if there is one food your patient really likes, put that on the plate and another food right next to it. In our case my mother loved mashed potatoes. So, I placed the dish in a way so the mashed potatoes where on the right (as she looked at the plate), and the cut meat (steak, chicken, pork chop, etc) where on the left. My mother ate lefthanded and this is why I put the mashed potato on the right. I also cut the meat or fish in very small pieces. She had to go over the meat to get to the potatoes with her fork, so my thought was she had to see the meat.
Praise the food. It is best to get in the habit of eating right along with them. If you are going to talk, praise the food. Not a long explanation, a simple explanation – yum, this is delicious. Good positive reinforcement can be helpful. You might praise your patient for eating also.
Create a Positive Atmosphere before you eat. Don’t just plop the food down in front of your loved one. Create a positive atmosphere. For example, while I had Dotty sitting at the kitchen table, and while I was preparing the meal, I would start singing one of Dotty’s favorite songs, like Shine on Harvest Moon. Or, I would just make up some song to get her attention and get her to interact with me. Singing always put Dotty in a good mood.
Keep Quiet. Once Dotty started eating I would usually hush up. This was so she wouldn’t get distracted from the food. Dementia patients can be easily distracted, and can get confused if you try and get them to multitask. One task at a time.
Eat small all day long. I would give Dotty six potato chips at a time. If you can get your loved one to eat a small amount, several times during the day, that might help. How important is nutrition? It is important for certain. However, you have to be realistic. For example, ice cream usually works very well. It is a source of liquid. You might have to resort to using Boost or Ensure to supplement meals. 3-4 ounces at most, at one time, is suggested. Think this way. One piece of broccoli or spinach is better than nothing. So small things all day long.
Ask yourself some questions. What did the person like to eat best in the past? Not what you like or think is best, what did they like?
Reduce Dementia-related SWALLOWING Problems
Per Timothy Hudson of lewybodydementia.ca: Choking is always a risk, even when healthy. However, a slow, silent threat exists which needs to be actively avoided, aspiration: accidentally having food or fluids go into the lungs instead of the stomach.
Aspiration frequently leads to pneumonia by having fluid buildup in the lungs, which is a leading cause of death in the frail.
Dementia with Lewy Bodies affects the autonomic nervous system, which renders simple, otherwise automatic reflexes ineffective. This is why swallowing problems, blood pressure and heart rate fluctuations, incontinence, and sleep disturbances commonly become problems. The “unconscious” mind essentially becomes unable to tell the body what to do.
Although aspiration in Lewy Body Dementia may be inevitable in more advanced stages, there are many things that can be done to avoid it earlier on. Carefully monitoring eating can make a very big difference, and can significantly prolong a good quality of life.
Eat When Awake and Alert.
Daytime drowsiness is common with dementia. In addition, with Lewy Body Dementia, attention can fluctuate greatly. That makes it very important to eat when the opportunity arrives, if possible — when alertness is high. This will greatly aid in swallowing and the pace of eating, usually, as well.
Be vigilant that your loved one does not become too tired during the meal. If so, it may be prudent to stop, and leave some food uneaten, rather than risk other complications such as choking on, or aspirating, the food. Deciding on a time limit for eating, in advance, may also help. This will also allow a little time to remain before lying down, and to brush the teeth.
Concentrate on Eating. Avoid Distractions.
There are many things that have helped with choking, and small-particle aspiration. The biggest has been limiting distractions. This means that eating is done in the calmest environment possible, with as little to draw the attention as possible. Limit visual distractions, noise, activity, and even conversation if talking while food is in the mouth is an issue. Concentrating fully on chewing, swallowing and clearing the mouth before the next piece of food goes in is critical.
Start with Fluid. And During Meals Too.
A moistened mouth and throat is needed for smooth swallowing. Having a small drink, or something very moist will usually activate salivation, which will aid in swallowing, and more fluids also aid in keeping hydrated in general as well.
Hydration is critical to overall health as well, lowering the risks of urinary tract infections, balancing electrolyte levels, maintaining proper digestive functioning and more. Active encouragement of fluid intake can make a big difference. Even though the old saying “you can lead a horse to water, but you can’t make it drink” is true, it is usually well worth the effort and frustrations to get the health benefits.
Keep fluid consumption as high as possible during the meal, and choose the drink according to what they like (so they’ll be more willing to drink it) as well as what will benefit the most in terms of caloric content, consistency, and what complements the food being consumed.
Keep Chin Level, or Down.
Looking up can increase the risk of aspiration. When your head is tilted backwards, your chin is tilted upwards, and that opens the air passage in your throat, and slightly constricts the esophagus which increases the likelihood that food or fluids will go down the wrong way.
If you can keep the chin more downwards, that will help. This often means that if there are things your loved one is looking at while eating, they should be at eye level or lower. In addition, if you assist with putting the food in their mouth, do so from a lower position so they aren’t tilting their head back to have the food put in their mouth.
Make Food Bite Sized or Pureed.
Find out what foods are difficult, and analyze other foods before you present them to see if they need to be modified. If you’re finding that chicken breast is posing problems, pork and other meats may as well. Sometimes modification may be as simple as cutting into small pieces, other times it may be pureeing or making juices or smoothies.
Cutting food into small pieces achieves two benefits: it makes it more difficult to put large amounts in the mouth at once, and they require less chewing.
Use small utensils so large volumes of food can’t be put in the mouth as easily or quickly.
Add Sauce to Keep Moist.
Sauces come in many forms, and they’ll pretty much all help with swallowing. Ketchup, mayonnaise, gravy, bbq sauce, jellies and more can make food more flavourful, fun, and make swallowing easier. Try some new ones to add some variety: as swallowing becomes more difficult, choice often becomes limited, and a new flavour can help.
Ensure Empty Mouth Before Next Bite.
Persons with dementia often will keep putting more food in before the previous bite has been swallowed. “Pocketing” is a common tendency: keeping some food in the cheeks or back of the mouth rather than swallowing fully. Keep an eye on this: even when it doesn’t happen frequently, it can happen spontaneously, especially when tired or temporarily distracted.
If you can encourage them to have a sip of something, that may help clean out the mouth. Also consider getting them to pause, and doing a double-swallowing action to ensure that as much as possible has been swallowed.
Yogurt or Apple Sauce as Dessert.
Having a few spoonfuls of yogurt or apple sauce will help clean out any remaining particles of food, especially if a few minutes pass before consuming it. This is usually relatively easy to swallow, and will also help prevent acid reflux as well.
Make Smoothies, or Thicken Liquids If Helpful.
Thin fluids like water can go too quickly down the throat and into the trachea instead of the esophagus. To avoid this, thicker liquids may help. There are differing consistencies in regularly available drinks. For example, tomato, mango and pulp-in orange juice are all “slower” than apple juice. This is something that differs for every individual, so I won’t go into it further, but there are tasteless gelatine powders which can be added to any “fast” fluid (water, juice, coffee, etc) that makes them “slower”.
An alternative is to make your own juices and smoothies with your own fresh or frozen ingredients. This allows you to make them as thick or thin as is best for the circumstances, and also allows you to very creatively adapt the calories, flavour, and contents of the drinks for your loved one. They may enjoy them so much they will not want to eat regular food.
Brush After Every Meal and Snack.
Clearing the mouth after eating will greatly decrease aspiration risk. If you can have your loved one brush their own teeth, that’s great. If not, you will likely have to help them or do it for them. You don’t need to use toothpaste, or use a bathroom: if you can get the particles cleaned, that is the main thing. Use a basin or bowl to have them spit anything out. If the tips above are followed, there shouldn’t be very much left in the mouth, but it is prudent to get everything out, so that choking and aspiration do not occur afterwards, when at rest.
Stay Up After Eating To Get Food Down.
Don’t go to bed immediately after finishing. Reclining too soon after eating can cause an increase in potential acid reflux (GERD) as well as aspiration. Stay upright for 20 minutes, or for as long as possible afterwards. This will help the food go lower in the digestive tract, which will increase the likelihood it will be processed properly, and that more of the food will be gone from the mouth which will decrease the potential for it to go into the lungs. http://www.lewybodydementia.ca/solve-swallowing-problems-and-avoid-aspiration-in-dementia
When eating, do the best you can to keep the person in an upright position. Slumping forward or reclining is not good for digestion. It they are burping a lot, complaining of heartburn and have a constant dry cough it could be reflux. Small amounts of food at a time and thorough chewing is important.
Practice gait training with the help of a metronome, a tool musicians use to keep a steady beat. A study published in March 2010 in PLoS One showed that when people with Parkinson’s walked to the sound of a metronome set about 10 percent faster than their fastest stride, it significantly improved their gait.
There is a free metronome app for your cell phone called imetronome.
Toileting for People with Dementia – Excellent advice per Family Caregiver Alliance: https://www.caregiver.org/toileting-dementia
- Set up the bathroom to make it as easy as possible for the person to get on to and off of the toilet, e.g. having a raised toilet seat and grab bars.
- Notice when the person gives a sign about needing to use the toilet, e.g. agitation, fidgeting, tugging on clothing, wandering, touching the genital area. Have a routine and take the person to the bathroom on a regular schedule, e.g. every two hours. You may have to respond quickly if someone indicates they need to use the bathroom.
- Some people have a regular schedule, especially for bowel movements. If this is so, remind the person to go to the bathroom at the usual time, e.g. right after breakfast.
- If the person needs help removing clothes, help him/her by moving slowly and encouraging him/her to help. Remind the person that they need to pull down their pants before sitting down. Clothes that are easy to remove will help, such as those with elastic waist bands.
- Don’t rush the person; allow time for them to empty their bowel and bladder. It may take a little time to get started. Walk away and come back in a few minutes or stand just outside the door.
- Hand the person toilet paper to use as appropriate. You may need to help get the person started. Using wipes can sometimes be easier than toilet paper if you need to wipe for them.
- Assist as needed to pull pants back up. Sometimes the person will walk away without pulling pants up, which is a fall hazard. Provide as much privacy and modesty as possible.
- Put a sign, preferably with a picture, on the door to the bathroom. Keep the door to the bathroom open so the person can see the toilet.
- Use a commode or urinal by the bed at night so the person doesn’t have to get up and walk to the bathroom, which increases the risk of falls and incontinence. Have a night light if the person does go to the bathroom at night. If a person has urgency when needing to urinate, a commode or urinal by the chair in the living room can also be helpful.
- Sometimes people reduce their fluid intake for fear of not making it to the bathroom. Dehydration can lead to other problems, including urinary tract infections. Make sure they stay hydrated by drinking throughout the day. However, limiting fluid at night might be helpful. Caffeine and alcohol can also increase urgency with urination.
- Using incontinence pads in the underwear might be a way to reassure someone that they don’t have to rush or panic when they have the urge to urinate.
- Flower pots on the floor, wastebaskets, and other containers can be mistaken for a toilet. Remove them from the area the person stays in and from near the toilet. Keep the path to the bathroom clear of obstacles and clutter.
Walking advice from a caregiver: If walking is still possible, safe and enjoyable for your loved one with Lewy Body Dementia, do it! It can be a lifesaver: physically, emotionally, and spiritually.If the ability to walk is lost, make sure to get outside — or to a window at least
Keeping a loved one mobile will also keep them in a better mood, feeling more independent, give them cardio-vascular exercise, and help improve their sleep patterns. In many cases, the ability to walk can continue far longer than you might expect. However, it will likely require a significant commitment from a care partner to maintain, in terms of making it a routine, facilitating it, being vigilant about safety and, frequently, physically supporting the person walking.
Be Hands On
Directly hold on to anyone who is not absolutely stable. Depending on the mobility, strength, balance and postural stability of your loved one, you may need to physically hold the person, to ensure they stay upright and on the right track. Avoid becoming distracted so you can focus on their walking. Once a person starts to fall, it is almost impossible to stop them, no matter how quickly you react. However, you can often sense impending instability and help them get to a safe place to sit down before that happens if you have a direct connection as they’re underway.
Helping a person walk can be dangerous to you as well. Attempting to hold a person up, or stopping a fall can very easily strain muscles or cause you to fall. Be extremely careful, plan ahead and stay aware with constant vigilance.
If you are assisting a person to walk, research and learn the best posture for you to assist, proper ways to hold them, support devices like belts with looped handles, and other methods. Each individual differs: every scenario cannot be covered here – it is best to seek out the appropriate information yourself, to suit your exact situation. An Occupational Therapist or Physiotherapist should be able to assess and help you with this. Acting on a personal assessment will help your loved one keep mobile longer.
Rollators and walkers are vastly more effective than canes. Care must be exercised to ensure that your loved one has enough comprehension and concentration to focus on how these devices are used to get any benefit from them. Reassess this ability regularly, since cognition with Lewy Body Dementia fluctuates radically, and sometimes declines rapidly.
You may need to help steer their rollator to avoid collisions. Vision problems will likely become apparent when using a rollator, because the placement of objects, distances, heights and textures will be misjudged. If they will tolerate your assistance, placing one hand on the rollator, or on their arm or back will help t0 gently guide the device, and make the experience safer. It will also make it less frustrating, since there will be less collisions with curbs, door-frames, etc.
Rollators and Walkers: What’s The Difference?
Walkers are lightweight frames that have four legs that terminate at the bottom with rubber pads, similar to a cane, sometimes replaced with two skis and two tennis balls, depending on use, terrain, etc. Rollators have a seat, four wheels, and hand-brakes to stop the device, and which can usually be locked to allow the person to use the the rollator as a chair.
Walkers are more stable, but unwieldy, slow and sometimes awkward, generally used for shorter distances only. Rollators are more difficult to handle, since they can run away on you since the wheels – by design – roll easily, and because your loved one may not understand how to use the brakes.
There is a newer style of Rollator that are also a transport chair, which is a great improvement. Basically, they function as a typical rollator, with small wheels, handles and brakes, but the seat faces forwards (instead of backwards in most rollators), and there are foot- and arm-rests so another person could propel and steer the rollator with an occupant safely in it. Usually, the seats of rollators are not very comfortable or stable.
Get Outside. Even If Walking Is Impossible
At some point, for any number of reasons, walking will become unsafe or impossible. I hope you will be able to facilitate excursions outside the normal environs for a long while, by taking your loved one out in a wheelchair, or seated on a rollator. A change in their environment and the new perspectives it brings seems critical to their well being. Nature heals.
–Timothy Hudson via http://www.lewybodydementia.ca/walking-is-great-for-lewy-body-dementia
Sippy Cup: Many people find it difficult to drink from a glass without spilling. Others cannot get a straw to work well. A sippy cup can work well and help individuals gain independence and dignity. No one has to hold it for them; they don’t need any more towels around their neck. They are able to pick it up themselves, take a sip when they decide, and there’s no mess. And it can make them happy doing so.
The following are many items that you may find helpful to have on hand:
- Bacitracin and/or Aquafor – for minor cuts
- A&D ointment – used as a skin protectant
- Bandaids, gauze pads
- Disposable gloves – or “examination gloves” – Vinyl (many people are allergic to latex)
- Baby wipes
- No Rinse Body Wash and No Rinse Dry Shampoo – will help a convalescent person feel clean and refreshed without using water. Has a very pleasing smell. Easy on the caregiver.
- Non-skid slippers
- Protective mattress pad
- Baby monitor – This works very well if you are in another room than the person who needs care
- Bed & wheelchair tray
- Sterile water
- Small scissor
- Biotene mouthwash for dry mouth – use with swabs
- Swabs for Biotene
- Dry eye drops – when eyes TEAR, it means eyes are dry. These can be used a few times per day
- Chux – these are disposable pads used on a bed
Helpful First Aid Kit: The following link from Caringvillage.com lists helpful items in What You Need in a Home First Aid Kit: https://www.caringvillage.com/2016/05/04/need-home-first-aid-kit