Welcome to the educational program Late Stages: Personal Care. This program will discuss personal care for the late and end stage individual with dementia. Sometimes referred to as activities of daily living, the personal care topics will include bathing, dressing, grooming, tooth brushing, and incontinence care. We will discuss the changes in functionality that occur during the late stages of Alzheimer’s disease and present principles and strategies for providing quality personal care.
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This is Lesson 25 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section. We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.
Let’s get started.
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Late and End Stages
The late and end stages of Alzheimer’s disease can last for up to 7 years.
At various stages, people with Alzheimer’s will need varying levels of assistance. Caregivers need to be prepared to provide assistance, but at the same time, allow the person as much independence as possible. In this program, we will address the more advanced stages of dementia, which require considerably more hands-on care.
Severe cognitive and functional decline occur In late-stage Alzheimer’s. Individuals with the illness are no longer aware of their surroundings or the events going on around them. Although they will recall their own name, they may forget the names of their spouse or children. They require assistance with personal care activities such as toileting and getting dressed properly.
Life for caregivers becomes more difficult as episodes of urinary and fecal incontinence increase, and there is severe disruption of the sleep cycle. Personality changes and behavioral symptoms include suspiciousness and delusions, hallucinations, and compulsive, repetitive behaviors. Wandering and getting lost can still be concerns, but they may be less able to open doors and move easily or quickly.
Due to increasing confusion and loss of abilities, problems arise in bathing, grooming, dressing, toileting, self feeding, and mobility. These challenges cause frustration and fear, which can lead to agitation and difficult behaviors, such as striking out at caregivers.
Late and End-Stages (Continued)
In the very late and end-stages of Alzheimer’s, individuals will require assistance with bathing, dressing, mouth care and toileting. They will need a wheel chair if they are able to get out of bed, but eventually will be bed bound and require complete bed care.
At this end-stage, physical health declines rapidly. They will lose weight, and vital organs, such as the heart, lungs and kidneys, may begin to fail.
In the final stage of dementia, individuals lose their ability to respond to the environment and to speak. They lose most of their functional skills, such as the abilities to walk, sit without support, smile, and hold their head up. Muscle rigidity and abnormal reflexes develop, and difficulty swallowing makes eating a challenge. As organ systems begin to fail, hospice care may be set up to make the person comfortable during the last days.
Obstacles
Let’s discuss some of the obstacles to personal care associated with Alzheimer’s disease.
Managing one’s personal care requires being able to access many skills that are acquired over a lifetime and then having the ability to execute those skills efficiently. In the late stages of dementia, these abilities are almost, if not completely, lost. This loss of the ability to perform routine skills is referred to as “apraxia.” In Alzheimer’s disease, the pathways in the brain that enable access and execution of these automatic skills are destroyed. Individuals may know they want to brush their teeth but cannot make themselves do it. Or, they may be able to execute a part of the skill but not be able to complete it.
Personal care also requires organizational ability: knowing what to do, when to do it, and planning and setting up all the necessary equipment to do it. In late Alzheimer’s disease, the ability to think logically and organize activities is lost.
Additional obstacles are the declining ability to recognize people, objects and places, which is called agnosia; and the inability to understand the spoken word, known as aphasia. Not recognizing the bathtub or shower and not understanding instructions or what is expected can be unsettling and even frightening for those with dementia.
Obstacles (Continued)
Physical obstacles can severely limit task performance. Being cold, fatigued or weak, feeling pain from arthritic changes or other medical condition, and having reduced mobility from dizziness or stiff and painful joints can severely limit the enjoyment of any personal care activity.
The environment can also create obstacles to activities. Unfamiliar people, objects, sounds and smells can confuse and frighten someone with dementia. Too much noise and clutter can be distracting. The atmosphere of a bathtub room or shower can be uninviting and uncomfortable. They can be cold and drafty, and showers may be harsh and stinging. Water on the floor can seem frightening and dangerous to those with dementia and reduced mobility.
Psychological obstacles can include fear and confusion resulting from the illness, which can cause the person to be agitated and even combative. Lack of privacy and the vulnerability of being naked can also cause anxiety and apprehension. People may remember previous negative experiences during personal care activities. These feelings can lead to agitation and combativeness when a caregiver tries to assist with personal care.
Let’s look at some important research in regard to activities of daily living for people with Alzheimer’s disease.
Person-Centered Care
Person-centered care means to see the person beyond the diagnosis, to tune into the person’s needs, personal preferences and life history, to acknowledge current frustrations, and to respect her or his dignity.
The bath, for example, needs to be tailored to the needs and comfort level of the person being bathed to reduce discomfort and increase enjoyment and pleasure. A person should never be forced to bathe. There is strong research indicating that a bath is not necessary every day, that once or twice a week is quite adequate with “spot” cleansing when necessary.
It has been shown that agitation during personal care activities occurs when the caregiver is focused on the task and not recognizing the comfort and preferences of the person.
For instance, if a person becomes anxious and reluctant to bathe, try to determine why. Oftentimes people are afraid of something, or need or want something before the bath or shower. Focus on the person and her or his needs first.
Case Study 1
- A. Mary could reduce the frequency of Robert’s baths.
- B. Mary could cover Robert with a blanket or towel and raise the room temperature before undressing him.
- C. Mary could give Robert his pain medication for his arthritis at least a half hour before the bath.
- D. Mary could schedule Robert’s bath for after his breakfast.
- E. All of the above.
Case Study 1 Answers:
Choice B: Mary could cover Robert with a blanket or towel and raise the room temperature before undressing him, is another good choice.
Robert may feel cold after getting out of bed in the morning and dislike the idea of undressing. Keep in mind that older people cannot regulate body temperature very well and so are very sensitive to cold. Mary could raise the thermostat or use a space heater to raise the room temperature. Covering Robert with a towel or blanket as he is being undressed would also prevent chill and respect his privacy. Mary should have all of these things ready for Robert before bringing him into the bathroom, because it is unsafe to leave a person with dementia alone, particularly in a cold and drafty bathing area where a slippery floor could cause a fall.
Choice C: Mary could give Robert his pain medication for his arthritis at least a half hour before the bath, is another good choice.
Robert has pain issues due to his arthritis, and movement during undressing and bathing likely causes him pain. The pain of arthritis is a chronic and sometimes subtle pain that sufferers often do not complain about. However, it can cause the person to be fatigued, depressed and irritable.
Proper pain management is very important for quality of life. If a person has chronic pain issues, pain medication should be given regularly whether asked for or not. A qualified healthcare professional should be involved in all pain management treatment plans.
Choice D: Mary could schedule Robert’s bath for after his breakfast, is also a good answer.
Robert’s resistance to bathing could be because he has unmet needs or wants. Because the bath was scheduled before his breakfast, he may have felt hungry or thirsty, or needed to use the toilet. It is also helpful to schedule the bath at Robert’s best time of day when he is not tired or irritable. Robert may have more energy and be in a better mood after breakfast.
Mary was being “task-focused” rather than “person-focused” with her care. She was more concerned about getting the task of bathing underway and the difficulties that she faced rather than about Robert’s needs. When interacting with Robert, her primary goal should be to focus on him and his needs.
Choice E: In this case study, all of the choices are good answers, therefore choice E, “all of the above,” is the best answer.
General Guidelines for Bathing
In summary, it is not necessary for an older person to have a bath every day. Bathing or showering 1 to 2 times a week unless soiled, and spot cleansing with a basin and cloth is usually adequate. Make the bathing experience pleasant and relaxing both for the caregiver and the care recipient. Focus on the person and their needs and wants rather than the task. When to time the bath and which method to use should be based on the lifestyle and preference of the persons involved.
Be sure to allow plenty of time for the activity. Activities always take longer than expected. And, even if the person is a spouse, she or he still will appreciate some modesty in this most private of activities.
Much of the challenging behaviors that occur during bathing come from people feeling vulnerable or violated. After all, they are undressed and others are handling their bodies in a very personal way. One of the core principles of dementia care is to promote autonomy. Caregivers need to allow those with dementia to do as much for themselves as possible and that they are comfortable doing. For example, washing their own face, washing a painful joint, or washing their own private parts should always be offered. If it is necessary for the caregiver to do the washing, she or he should first ask permission by saying something like, “It’s time to wash your private parts. Is that alright?”
Physical Environment for Bathing or Showering
Here are some factors to consider in preparing the physical environment for assisting someone to bathe or shower.
Having a large bathing or showering area that is accessible from at least two sides is helpful for maneuverability and safety. If the person prefers to shower, using a shower stall large enough for at least two people is best. As mobility declines in the later stages of the disease, there should be enough space to place a chair or even wheelchair in the bathing or showering area.
In order to prevent falls, make sure floors have a non-slip surface and are dry. Place nonskid floor mats or bathmats on tile floors. Bathtubs and shower stall floors should have safety strips or nonskid bathmats that stick to the surface. Avoid putting things into the bath water, such as bath oils, that will make the bathtub slippery. Consider installing rubberized or unglazed ceramic tile floors in shower stalls.
Lastly, carpeted floors of a single color are safer and more comfortable for bare feet than non-carpeted floors and will not produce glare.
Organization is also very important in providing a safe environment. Too many objects in a room can cause confusion, be distracting, and increase the risk of accidents. Extra cupboards, magazine racks, and laundry hampers, for example, can cause confusion. Simplify the environment by reducing unnecessary objects such as televisions, fans, free-standing heaters, power cords, and extra furniture. Clutter on counters and obstacles on the floor should be removed. Label and lock away cleaning solutions and other harmful substances, because they can be mistaken for shower gel, shampoo, or toothpaste. Make sure the door locks can be opened from the outside. Or consider removing or disabling the locks, because people with dementia may lock themselves in a room and forget how to open the door.
Physical Bathing Environment (Continued)
Proper shower or bathtub chairs and benches are important safety features. Chairs and benches with padded seats and backs increase comfort while sitting. Some chairs and benches have a large hole in the center, but this is uncomfortable and unnecessary. Chairs with several, small, smooth drainage holes work best. For non-fixed chairs, non-slip grippers on the chair’s feet will increase their safety. Sling seats and fold-down chairs are other options for the bathtub or shower.
A handheld showerhead should also be installed in place of overhead shower fixtures to allow control over the direction of the water. A shower within a bathtub can be awkward and even dangerous for someone with limited mobility. A bathtub can also be difficult for older persons to get in and out of. To make the bathtub safer, use a handheld shower head and a bathtub chair, fold down seat, or sling seat.
Sturdy hand rails and grab bars are essential, whether near the bathtub, shower stall, or toilet. Towel racks should never be used for steadying or leverage in lifting, as they are not sturdy enough.
Because many people reach for doors or door handles and furniture to steady themselves, it is important to have sturdy, stable furniture and door handles to prevent falls.
Proper lighting is important for preventing injuries. Provide bright overhead and task lighting. Older people need more lighting than younger people in order to see properly. Reduce glare by using indirect lights and covering windows with light, sheer curtains.
Lastly, contrasting colors are important for spatial orientation. Try to paint walls a flat color that contrasts with the color of the floors.
Getting In and Out of Bathtubs
Assisting someone to get in and out of a bathtub can be very challenging if the person has limited mobility. To help with stability and leverage, one or more grab bars should be installed near the bathtub. If the bathtub is low, the person may be able to step over with one foot, holding onto a grab bar with one hand and being assisted by the caregiver with the other arm and hand. If the bathtub is higher, have the person sit on the edge and assist her or him to swing the legs over the edge together or one at a time.
A transfer bench can be used to ease transfers into and out of the tub. To get in, the person sits on the part outside the tub and slides over and into the tub, using grab bars and caregiver assistance.
Getting out of the bathtub is harder than getting in, because the person is wet and sitting down with legs out in front. The person will need to hold a grab bar or overhead trapeze and have assistance to rise up.
If there is concern for falls while getting out of the tub, let the water drain out first and avoid using bath oils that will make the tub slippery.
A sling seat that fits over the sides of the bathtub allows the person to sit above the tub bottom and nearly level with the tub’s edge. This can make it easier to get in and out of the bathtub, but limits the opportunity for a good soak in the water.
There are commercial models of tubs created for nursing homes that have side doors so that people can step in and out of them rather than over the side as in a household bathtub. Their size and shapes can be daunting. However, these might work very well for some caregivers and their living situation.
When the person is ready to get out of the bathtub or shower, a covering on the floor and a ready towel and robe should be available.
Water Temperature
Water temperatures greater than 120 oF can scald a person and may require medical treatment. It doesn’t take more than a second or two for someone to get a serious burn if the water is really hot. Additionally, the elderly and those with dementia and/or reduced mobility have delayed reactions to a sudden rise in water temperature. The dilemma is that, to maintain a hot water supply safe from bacteria, the CDC recommends a hot water temperature of 140 oF. The best way to determine water temperature is to measure with a water thermometer. A safe and comfortable bathwater temperature is usually around 100 oF. It is a good idea to feel the water for yourself, so that you get a sense of what that safe water temperature feels like. Generally, if the water feels too warm for the caregiver, it could be dangerously warm for the person being assisted. Keep in mind that the water needs to be warm enough that the person does not become chilled.
If you are going to use water heated above 114 oF, consider installing some form of anti-scald device in your home. Anti-scald devices reduce water flow to a trickle when the output water temperature exceeds a set limit, such as 120 oF.
A common type of anti-scald device is a pressure-balancing valve. The devices sense when there is too little cold-water or too much hot-water pressure. They automatically resume full flow when the temperature reaches a set, safe range. Most pressure-balancing valves can maintain a mix of hot and cold water to within 3 oF of a desired temperature (for example: 100 to103 oF).
A better, but more expensive, option is an anti-scald device that adjusts for both temperature and pressure differences.
Here are some additional tips for preventing burns. If the faucet has separate taps for hot and cold water, consider switching to safer, single lever faucets. Single levers are easier to balance the water temperature and less confusing to someone with dementia and/or visual impairment, who may not remember which tap is hot or cold. If the hot and cold water labels are not clear, consider placing clear hot and cold labels that easily identify which tap or direction is which. When turning on the water, start running the cold water from the faucet first, and then add the hot water.
Lastly, consider placing soft or childproof covers on faucet taps to prevent the person from turning on or adjusting the water without supervision.
Promoting Comfort
The bathing experience needs to be tailored to the needs and comfort level of the person being bathed to reduce discomfort and increase enjoyment. Try to have the bathroom completely prepared prior to bringing the person in for the bath or shower. Having all the supplies ready and within arm’s reach will limit delays during the activity.
If the sound of running water causes agitation, fill the tub before the person enters the room. Otherwise, the water should be nearly drawn when the person arrives in the tub room, so as not to take time filling the tub, but to give the person a chance to test the water and adjust the temperature if necessary. It is safer to have the water cooler when she or he steps in and then warm it up if desired.
Make sure individuals are comfortable on the way to the bathing area whether they are walking, in a wheelchair, or in a shower chair. If they are already undressed, keep them well-covered and warm. Adjust the room temperature to a comfortable setting for older people, as they tend to chill easily. If the person is undressed and waiting to enter the bath or shower, cover the body with a blanket, towel, or robe.
Have a large towel handy to cover the person while other parts are being washed. Yes, the towel will get wet, but the person will be covered, and even a cotton towel can provide some warmth in a shower or bathtub.
Try warming the bath towels, blanket, or robe in the dryer for a few minutes just prior to use, as this can increase comfort and the likelihood of participation.
Creating a Familiar, Pleasant Environment
A familiar caregiver with a pleasant, calm manner should assist with bathing. Caregivers should not leave the person unattended in the bath, shower, or potentially hazardous area, or allow themselves to be distracted for extended periods of time.
Having some familiar and pleasant objects in the room can help to relax and comfort the person. For example, place flowers in a vase that the person likes on the bathroom counter, put out preferred soaps and lotions, and display appealing objects such as wall art, plants, and colorful towels.
Don’t forget to consider the sounds, smells and lighting in the environment. Try playing calming or preferred music, or leave the room quiet. Use relaxing fragrances, such as lavender or Melissa oil (lemon balm). Studies have shown that using relaxing fragrances with massage, such as of the arms and face, can help reduce agitation and anxiety.
It is important to provide good lighting, without glare or shadows that can confuse or frighten the person. If someone is confused by reflections or becomes frustrated by the inability to recognize one’s face, cover or remove mirrors.
Case Study 2
Case Study Strategies
In this version of the scenario, Mary made some changes to improve the showering experience for Robert. She planned and organized the activity before hand. She scheduled the shower during Robert’s best time of the day when he was not hungry or tired. She laid out his familiar shampoo, towels, and other supplies.
Next, Mary used effective communication. After preparing the bathroom, she found Jack, smiled while making eye contact and oriented him to the activity by saying: “Robert, it’s time for your shower.” She used short simple directions and said the important words last. She used gentle touch to help him undress and guide him into the shower. When he seemed hesitant or unsure about the next step, she cued him.
Lastly, Mary engaged him in the activity and made sure his needs were met. She made sure his pain was managed, asked him about the room temperature, and had him test the water.
Sponge or Towel Baths
In the late stages of Alzheimer’s, a sponge or towel bath can be an excellent alternative to full baths. For someone who is still able to walk, sponge baths can be done in a plumbed lavatory or at a free standing basin of water. A shower chair can be placed in front of the basin or in a lavatory and a washcloth, soap, and towel made available.
If individuals are able to wash their own private parts, they should be encouraged to do so. If not, they can be seated on a shower chair and given assistance. Wear gloves and use a separate washcloth or sponge to wash the genital area, then pour clean water over the area. Be sure to tell them what you are doing, seeking permission just as for any other bath.
Towel Bath in Bed
For someone who is bed-bound in the very late or end stages of dementia, the best bathing method is the towel bath in bed. The same communication skills of explaining the procedure, honoring individual preferences, encouraging participation, respecting privacy and autonomy, and establishing environmental support are as much a part of this method as any other.
There are many ways to give towel baths, but we will present one of these ways in detail. The recommended supplies for this method includes 1 or 2 bath blankets or large towels, 2 or more bath towels, 3 or more washcloths or sponges, no-rinse or tear-free soap, and a 2 to 3-quart basin filled with water at approximately 105°F. In professional care facilities, it is usually recommended to fill water into a plastic bag within a basin or pitcher. You should also have a second basin of water for rinsing the soap if needed and another basin if you are washing hair with a soap or shampoo that requires rinsing.
Assemble all the materials before starting the bath. Add the soap to one basin of water to form a soap solution, using the manufacturer’s instructions for dilution. Cover the pitcher or seal the plastic bag to keep the water warm and prevent spills. Then take the supplies to the care recipient.
Always ask for permission to help the person bathe. Warm up the room if necessary and keep extra towels, blankets, and a robe for warmth and modesty. Ensure privacy by closing the doors and window treatments. If the person is easily confused, cover the mirrors to prevent confusion from reflections. Depending on what the person likes, make the room quiet or play soft music. Ask if dimming the lights is preferred.
Explain what you are going to do before each step and encourage the person to do as much as possible. Wash your hands before beginning. Then ask for permission to help the person undress, keeping exposed areas covered with a towel, bath blanket, sheet, or robe. For bedbound individuals, tuck one or two bath blankets or large towels under their body to keep the bed dry.
In this approach to towel baths, start with the person’s face, keeping the rest of the body completely covered with a bath blanket, large towel, or sheet. Soap is not needed, but a warm washcloth folded into a “mitt” can be used to gently cleanse the face around the eyes, nose, mouth and ears. Continue rinsing the washcloth in the basin to keep the cloth warm and clean. Blot dry the face with a soft towel. Apply moisturizing lotion to the face to prevent it from drying while washing the rest of the body.
Next, expose one arm and shoulder. Use the washcloth to cleanse the shoulder and arm and a soft towel to blot dry. If you prefer, you can place the basin on the bed and place the person’s hand in the water while you wash the rest of the arm. Then after the soak, cleanse and dry the hand. Repeat this procedure on the other side.
Refresh the water in the basins if necessary, being sure that the person is covered and safe while you leave the bedside.
The next step is the upper torso. Keep the person covered except for this area. Be sure to wash the armpits and under any folds of skin, including the breasts. Blot dry and then cover the upper torso with a towel and proceed to wash the abdomen.
With fresh water, move onto the legs. Expose one entire leg, place the basin with water on the bed, bend the knee, and if you prefer, put a foot into the basin to soak. Start washing the thigh and lower leg. Blot dry the leg and place a towel over it. Massage the foot in the basin as you cleanse it, then blot dry, being sure to dry carefully between the toes. Cover the exposed leg, refresh the water in the basin, and repeat the procedure on the other side.
Towel Bath (Video)
To cleanse the backside, you will need to turn the person onto one side. You can use supports or pillows to prop them up, folding the leg that is on top forward over the other leg. Wash and blot dry the back and buttocks gently. Use oil or lotion to gently massage the backside with long, broad strokes.
If persons are able, they should wash their own genital area. If they are unable to wash themselves, ask permission and do it for them, as you explain what you are doing. Use a separate washcloth and wear gloves to wash the genital area, always from front to back. A shallow bed-pan may be placed under the buttocks to rinse the area with clean water if needed.
Bed Sores
During the towel bath, inspect the person’s skin for areas of breakdown, rash, or reddening, particularly over bony areas such as the heels, tailbone, and hips. Pressure from lying in bed or sitting for long periods, perspiration and incontinence may cause irritation, pressure ulcers or “bed sores,” and infection. Bed sores or decubitus ulcers can be a very serious complication of being bedbound. For additional information about bed sores, including warning signs and treatment, please see the provided link.
After gently drying off the body, apply a moisturizing lotion. If the person is fatigued, consider covering the person with a dry, warm blanket or robe for a little while before assisting the person to dress.
Click here for additional information about bed sores.
Bathing Tips
Because elderly people have thin and tender skin, harsh soaps should be avoided.
When drying off, rubbing with a rough towel may injure their skin, so it is best to gently blot dry. Be sure to use a moisturizing lotion after the bath to prevent drying.
During the bath or shower, observe your person’s skin for rashes, burns, sores, and other kinds of breakdown.
Use effective communication techniques such as using simple, short directions and using the important word last. For example, say: “Robert, it’s time for your bath.”
Use cueing and guiding as needed with a pleasant demeanor to assist with undressing and bathing.
If the person resists, find out if there are any unmet needs and address them. If there are no apparent needs, try using distraction and then start again by assisting with the task. The person might automatically follow your lead.
If the person is insistently refusing and there is no apparent unmet need, leave for a few minutes. When you return, the person may have forgotten about not wanting to bathe.
Bathing Summary
In summary, even in the late stages of Alzheimer’s disease, it is important to respect privacy and preserve dignity by covering with towels, blankets, robes, and asking permission to touch. By using effective communication skills, careful planning and organization, and considering the person’s comfort and preferences, bathing can be an enjoyable activity. It is important to consider safety issues, including fall risks and water temperature. Never leave the person alone in a tub or in the shower.
Try to leave your own frustrations and worries aside and use the time to give exclusively to that person.
To learn more about assisting with bathing and other activities of daily living, please go to the provided link.
Dressing and Grooming
An attractive appearance is important to everyone’s self esteem. Even more so for someone who is losing the ability to master their personal care. The dressing activity is an opportunity to promote autonomy and self esteem in the person you are caring for. One of the core principles of care includes encouraging people to do as much of their own self-care as possible.
One way to do this is by offering simple choices, but not so many choices that it causes frustration.
Dressing requires fine motor skills for buttoning and fastening, and large motor skills to pull up trousers or to put a dress down over one’s head. It also requires knowing where clothes are and which clothes to wear for the occasion and weather. In late stages, these skills are severely declining or are lost and so the caregiver will have to help accomplish those things.
Dressing Guidelines
Here are some guidelines for assisting with dressing. Don’t force or rush the person to dress or undress. Be patient.
Provide clothing that is easy to put on and take off, such as garments without many buttons and fasteners or those that use Velcro fasteners or elastic waistbands, and garments that are stretchable and open on the front rather than the back. For women, dresses are easier to manage than slacks when using the toilet. If slacks are used, elastic bands or Velcro fasteners are easier to manipulate than zippers, snaps, or buttons when fine motor skills decline.
For ease of cleaning up, provide clothes that are easy to launder.
People with dementia lose their ability to organize and plan, so if you are selecting clothing, lay them out on the bed or a chair in the order that they should be put on.
In choosing clothing, try offering layers of garments. It is easier to remove or add layers of clothing to adjust for comfort and temperature rather than changing an entire outfit.
If the person has a great preference for a shirt or dress, have several of the same design or style.
If people are insistent on their choice of clothing, and it is not hindering or hazardous to anyone, don’t argue; let it alone.
In the very late stages, particularly if the person is bed-bound, short nightgowns and pajama bottoms will work best. Long gowns will twist and tighten and be uncomfortable. The key is to be warm and comfortable and to make dressing easier. There are special garments for care recipients that can be purchased through home care suppliers. Two web sites that offer special clothing are provided.
Lastly, provide well-fitted shoes, as they provide more stability than slippers or bare feet.
Click here to links to websites that offer special clothing
Dressing Issues
Let’s discuss some common dressing issues. Sometimes the people with dementia may dress or disrobe inappropriately – or what may seem inappropriate to others. It is important to find out the reason for the behavior. For example, someone may layer several sweaters, skirts or trousers. Someone else might wear a winter coat in summertime. It is possible that the person is cold and needs layers of clothing or an overcoat to feel warm. Older people do not have an efficient temperature regulating system and may indeed feel cold when you are quite warm.
Sometimes people may take off clothing inappropriately. Again, try to find out the reason for the behavior. They may be too warm, or the garment may be too tight or twisted and causing constriction. They may need to use the toilet, or may have wet or soiled themselves. Check for such these possibilities.
Sometimes people are reluctant to remove clothes – either for bedtime or to bathe. It could be that they are afraid they will lose their clothes or that they will be stolen. They could be embarrassed about undressing in front of another person, or afraid of being attacked or violated in some way. Try to find out the reason and acknowledge their concerns. Be reassuring and respectful. Ensure privacy while dressing by closing doors and covering exposed body parts with a towel or robe.
Because people with Alzheimer’s disease are not easily predictable, try to remain flexible with your approaches until you find one that works. If, for example, someone refuses to undress for bed, consider letting them go to bed in their clothing. The clothing may become uncomfortable after a bit, and they may then want to change. Or you could try getting them to change into night clothes earlier in the evening before they are tired and just want to lie down.
Grooming
An attractive appearance is important to self esteem. A shampoo and fresh hairdo even in the late stages of Alzheimer’s can improve a woman’s mood. Hair care and a shave for the man are just as important. If able to make the trip, going to the beauty salon or barber shop with your care recipient can provide a fun social experience for everyone. Otherwise, you can provide similar care at home.
Nail care is important but often neglected because it takes time and can pose difficulty if the person is reluctant. When trimming finger or toe nails, have all the equipment ready first. Try soaking the hands or feet in warm water to soften the nails before clipping them. Good-smelling lotions and pretty containers can enhance the experience. Use great care in trimming finger and toenails, as a cut can result in pain or an infection.
Foot care is essential for both men and women. Toes and toenails that have been kept inside shoes, especially ill-fitting shoes for many years, can be sore and distorted. A podiatrist should be consulted if there are painful joints, reddened areas of the skin, or discolored toenails.
Whether helping people with hair care, shaving, or nail care, be sure to tell them what is going to happen and encourage them to participate as much as they comfortably can.
Shampooing
Washing the hair can be distressing to those with dementia, because water and soap can easily get in the face and eyes. But it is important to shampoo fairly often to keep the hair and scalp clean and healthy.
Shampoos can be done in many settings: in the shower or bathtub, at the kitchen sink, or even in bed. There are also no-rinse and dry shampoos that require little or no water.
If shampooing hair in the shower or bathtub, the best position is for the person to be seated on a chair or bench while using a handheld showerhead or nozzle with a soft spray of water at a comfortable temperature. To keep water from the eyes and face, place a small, dry towel over the person’s eyes and face, or, if that is distressing, over just the forehead. Have the person tilt the head back slightly, so that the water and shampoo run backward. The person should hold onto the chair handles, grip bar, or sides of the tub for stability if needed. Use as little shampoo as possible so that rinsing is minimal. Try to avoid getting any water or shampoo on the person’s face. Angle the stream of water away from the face onto the hair. Using a tear-free baby shampoo can prevent eye irritation and be more gentle on skin and hair.
Getting a hair wash can be exhausting for someone with dementia, so if the person is already fatigued from bathing or showering, it may be best to postpone the shampooing for another time.
Shampooing (Continued)
Shampooing at the sink will be easier for some people. Place a comfortable chair in front of a sink that allows the person to lean the head backward over the sink. Positioning a rolled up towel on the end of the sink to help support the neck and shoulders can make the person more comfortable. A sink with an extendable spray nozzle accessory is very useful. Otherwise, you can fill a plastic pitcher or large plastic cup with water to wet and rinse the hair.
Do not lean the head forward over a sink, as this allows water and shampoo to flow onto the face and can be disorienting and frightening. If a shower or tub shampooing is not practical, options include rinse shampoos and dry shampoos. To use a no-rinse shampoo, you gently apply the liquid into the hair to create a foam lather. Then you simply wipe out the foam with a dry towel. If you want to remove more of the shampoo, you can first use a damp towel to wipe away most of the foam, and then use a dry towel to finish drying.
Another option is dry shampooing. Dry shampoos take the form of a powder or an astringent that can be worked into the hair and then brushed out or wiped out with a damp towel. Be aware that some of these can leave a residue or white color in the hair.
Various no-rinse and dry shampoos are available in stores and on the internet, so follow the instructions specific to each product.
To learn more about assisting with dressing and grooming, please go to the provided link.
Oral Care
Oral care should be provided following any food intake and before retiring at night. If individuals are able to get to the wash basin either in a wheel chair or by walking with assistance, they can be assisted to use a soft toothbrush with a small amount of toothpaste. They may need cueing and guiding to brush and rinse. Try to find a toothbrush with a handle that the person is able to grip and maneuver well. It may help to wrap a small washcloth around the handle and tape it down to increase the ease of gripping.
If assisting someone who is confined to bed, you will need a kidney-shaped basin that can be purchased at most drug stores, and a soft brush with a wide base. While the bed is still elevated following a meal, obtain a cup of water and a small amount of preferred toothpaste. Dip the toothbrush with paste into the water and gently assist to clean the teeth. If the person can hold the toothbrush, this should be encouraged.
After brushing, have the person take some sips of water to rinse the mouth. Here is where the basin comes in. You do not want the person to “spit,” and in many cases, she or he will not have the strength to do so. Gently help the individual turn the head to one side, hold the basin against her or his cheek at the corner of the mouth and say: “Robert, (pause) just let the water run out into the basin.” There is a natural tendency to let the water roll out of the mouth. If he swallows some, it s OK. That is why we use just a small amount of toothpaste.
In some cases, people may resist a toothbrush. You can wait for a more opportune time, or help them to just rinse their mouth out a couple of times. If they resist this, a drink of water will clear much of the food residue in the mouth. Moist swabs may also be used to cleanse the inside of the mouth and lips.
In the very late stages, individuals may become dehydrated and their mouths become dry. In this case, a moisturizer can be applied to the lips and corners of the mouth with a swab. Adequate hydration is an important part of mouth care during any stage of dementia.
Lastly, a dentist should be consulted about any serious dental issues.
Toileting
In the middle or late stages of Alzheimer’s, people will begin losing bowel and bladder control due to progressive brain damage. At first, the incontinence is likely due to confusion about where the bathroom is and how to get their clothes off. Men may use a flower pot or a waste basket, whereas, women may soil clothing and hide it.
As the disease progresses, decreased mobility and loss of abilities contribute to incontinence.
With declining nutrition, declining mobility, and incontinence, skin breakdown around the buttocks and genitalia can become serious concerns. Caregivers should carefully observe the skin for reddened or broken areas, as these can lead to skin ulcers or “sores” and infections.
Additionally, it is important to clean the person soon after they have soiled themselves, as urine and fecal matter can cause sores, skin infections, or urinary tract infections, particularly in women.
Toileting Guidelines
As Alzheimer’s disease progresses, you can maintain continence as long as possible with a few guidelines.
First of all, treat any “accidents” as matter-of-factly as possible, with reassurance and without blame or teasing. Incontinence is embarrassing, but it is part of the disease, and we must show respect for the person with this unavoidable problem.
Assess when, where, and how the incontinence occurs. Watch for signs of restlessness, such as looking around as if searching for something, and pulling on clothes.
Keep a consistent, frequent schedule for toileting. For example, assist the person to the toilet before and after meals, before and after exercise and outings, at bedtime, and when waking during the night.
Even in the late stages, an individual can be helped to maintain continence by having clothing that is easy to manage and avoiding caffeine and liquids late at night.
To learn more about managing incontinence, please go to the provided link.
Changing Bed Linens (Video)
Now let’s discuss how to change the bed linens.
If individuals are able to get out of bed, you can assist them out of the bed to sit in a comfortable chair while you change the sheets and make the bed.
For bedbound individuals, you will need to roll them onto one side while you stand with their backside to you. As you support their position, un-tuck the soiled linen on that side of the bed and bunch it up lengthwise against their backside, following with the clean linen, also bunched up lengthwise. Then you will roll the person onto the other side (toward you) and over the bunched up sheets.
Before you move to the other side of the bed, protect the person from falling out by stationing another caregiver at the person’s front side, or raise the bed-rails. When the person is safe and steady, switch sides. On this new side, pull the soiled sheet out and the clean sheet towards you, straightening as you go. Tuck the sheet in and help the person return to a comfortable position.
Then replace the soiled top sheet, blankets and pillow cases with clean ones, and position them comfortably around the person.
If the person is large or heavy, it may require two people standing on either side of the bed to roll the person onto the side and to pull the linens.
When positioning people, try to roll them gently by their torso and upper arms, and don’t forget to position their arms and legs so that they are comfortable. Avoid jerking or sudden movements.
Summary of Dressing, Grooming, and Toileting
In summary, dressing is a part of self-identity. Offering some choices and encouraging self-care can promote self-esteem. So it is important to provide clothes that are easy to manage and to organize the clothes for the person. Always remember to respect modesty and privacy even during the late stages of Alzheimer’s. If dressing issues arise, try to determine the reason for the behavior and address any needs. Hair care, shaving, nail care, and foot care are also important to self-esteem as well as good health. Shampooing can be done in the shower or bathtub, at a sink, or in bed. Alternatively, no-rinse and dry shampoos can be used to cleanse hair.
Oral care can involve tooth brushing, rinsing the mouth, wiping with wet swabs, and drinking water. An unavoidable part of Alzheimer’s disease is incontinence, which can contribute to skin breakdown and infections. To help manage incontinence, treat it matter-of-factly and try to watch for signs that may precede episodes. Keep a frequent toileting schedule, and avoid caffeine and liquids late in the evening. When changing the bedding for individuals who are bedbound, it is important to position them properly from side to side while keeping in mind their safety and comfort.
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Written by: Catherine M. Harris, PhD, RNCS (University of New Mexico College of Nursing)
Edited by: Mindy J. Kim-Miller, MD, PhD (University of Chicago School of Medicine)
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