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How am I going to continue? I am caring for someone who no longer knows me, I feel like I am living with a stranger. These behaviours are so not like my husband- who is this man? No matter what, in a situation like this, you are not along!
The following information was taken from Family Caregiver Alliance.
Repetitive Speech or Actions (Perseveration)
People with dementia will often repeat a word, statement, question, or activity over and over. While this type of behavior is usually harmless for the person with dementia, it can be annoying and stressful to caregivers. Sometimes the behavior is triggered by anxiety, boredom, fear, or environmental factors.
o Provide plenty of reassurance and comfort, both in words and in touch.
o Try distracting with a snack or activity.
o Avoid reminding them that they just asked the same question. Try ignoring the behavior or question, and instead try refocusing the person into an activity such as singing or “helping” you with a chore.
o Don't discuss plans with a confused person until immediately prior to an event.
o You may want to try placing a sign on the kitchen table, such as, “Dinner is at 6:30” or “Simon comes home at 5:00” to remove anxiety and uncertainty about anticipated events.
o Learn to recognize certain behaviors. An agitated state or pulling at clothing, for example, could indicate a need to use the bathroom.
Seeing a loved one suddenly become suspicious, jealous, or accusatory is unsettling. Remember, what the person is experiencing is very real to them. It is best not to argue or disagree. This, too, is part of the dementia-try not to take it personally.
o If the confused person suspects money is “missing,” allow her to keep small amounts of money in a pocket or handbag for easy inspection.
o Help them look for the “missing” object and then distract them into another activity. Try to learn where the confused person's favorite hiding places are for storing objects, which are frequently assumed to be “lost.” Avoid arguing.
o Take time to explain to other family members and home-helpers that suspicious accusations are a part of the dementing illness.
o Try nonverbal reassurances like a gentle touch or hug. Respond to the feeling behind the accusation and then reassure the person. You might try saying, “I see this frightens you; stay with me, I won't let anything happen to you.”
Restlessness, agitation, disorientation, and other troubling behavior in people with dementia often get worse at the end of the day and sometimes continue throughout the night. Experts believe this behavior, commonly called sundowning, is caused by a combination of factors, such as exhaustion from the day's events and changes in the person's biological clock that confuse day and night.
o Increase daytime activities, particularly physical exercise. Discourage inactivity and napping during the day.
o Watch out for dietary culprits, such as sugar, caffeine, and some types of junk food. Eliminate or restrict these types of foods and beverages to early in the day. Plan smaller meals throughout the day, including a light meal, such as half a sandwich, before bedtime.
o Plan for the afternoon and evening hours to be quiet and calm; however, structured, quiet activity is important. Perhaps take a stroll outdoors, play a simple card game, or listen to soothing music together.
o Turning on lights well before sunset and closing the curtains at dusk will minimize shadows and may help diminish confusion. At minimum, keep a nightlight in the person's room, hallway, and bathroom.
o Make sure the house is safe: block off stairs with gates, lock the kitchen door and/or put away dangerous items.
o As a last resort, consider talking to the doctor about medication to help the agitated person relax and sleep. Be aware that sleeping pills and tranquilizers may solve one problem and create another, such as sleeping at night but being more confused the next day.
o It's essential that you, the caregiver, get enough sleep. If your loved one's nighttime activity keeps you awake, consider asking a friend or relative, or hiring someone, to take a turn so that you can get a good night's sleep. Catnaps during the day also might help.
Ensuring that your loved one is eating enough nutritious foods and drinking enough fluids is a challenge. People with dementia literally begin to forget that they need to eat and drink. Complicating the issue may be dental problems or medications that decrease appetite or make food taste “funny.” The consequences of poor nutrition are many, including weight loss, irritability, sleeplessness, bladder or bowel problems, and disorientation.
o Make meal and snack times part of the daily routine and schedule them around the same time every day. Instead of three big meals, try five or six smaller ones.
o Make mealtimes a special time. Try flowers or soft music. Turn off loud radio programs and the TV.
o Eating independently should take precedence over eating neatly or with “proper” table manners. Finger foods support independence. Pre-cut and season the food. Try using a straw or a child's “sippy cup” if holding a glass has become difficult. Provide assistance only when necessary and allow plenty of time for meals.
o Sit down and eat with your loved one. Often they will mimic your actions, and it makes the meal more pleasant to share it with someone.
o Prepare foods with your loved one in mind. If they have dentures or trouble chewing or swallowing, use soft foods or cut food into bite-size pieces.
o If chewing and swallowing are issues, try gently moving the person's chin in a chewing motion or lightly stroking their throat to encourage them to swallow.
o If loss of weight is a problem, offer nutritious high-calorie snacks between meals. Breakfast foods high in carbohydrates are often preferred. On the other hand, if the problem is weight gain, keep high-calorie foods out of sight. Instead, keep handy fresh fruits, veggie trays, and other healthy low-calorie snacks.
People with dementia often have difficulty remembering “good” hygiene, such as brushing teeth, toileting, bathing, and regularly changing their clothes. From childhood we are taught these are highly private and personal activities; to be undressed and cleaned by another can feel frightening, humiliating, and embarrassing. As a result, bathing often causes distress for both caregivers and their loved ones.
o Think historically of your loved one's hygiene routine - did she prefer baths or showers? Mornings or nights? Did she have her hair washed at the salon or do it herself? Was there a favorite scent, lotion, or powder she always used? Adopting-as much as possible-her past bathing routine may provide some comfort. Remember that it may not be necessary to bathe every day-sometimes twice a week is sufficient.
o If your loved one has always been modest, enhance that feeling by making sure doors and curtains are closed. Whether in the shower or the bath, keep a towel over her front, lifting to wash as needed. Have towels and a robe or her clothes ready when she gets out.
o Be mindful of the environment, such as the temperature of the room and water (older adults are more sensitive to heat and cold) and the adequacy of lighting. It's a good idea to use safety features such as non-slip floor bath mats, grab-bars, and bath or shower seats. A hand-held shower might also be a good feature to install. Remember-people are often afraid of falling. Help them feel secure in the shower or tub.
o Never leave a person with dementia unattended in the bath or shower. Have all the bath things you need laid out beforehand. If giving a bath, draw the bath water first. Reassure the person that the water is warm-perhaps pour a cup of water over her hands before she steps in.
o If hair washing is a struggle, make it a separate activity. Or, use a dry shampoo.
o If bathing in the tub or shower is consistently traumatic, a towel bath provides a soothing alternative. A bed bath has traditionally been used with only the most frail and bed-ridden patients, soaping up a bit at a time in their beds, rinsing off with a basin of water, and drying with towels. A growing number of nurses in and out of facilities, however, are beginning to recognize its value and a variation-the “towel bath”-for others as well, including people with dementia who find bathing in the tub or shower uncomfortable or unpleasant. The towel bath uses a large bath towel and washcloths dampened in a plastic bag of warm water and no-rinse soap. Large bath-blankets are used to keep the patient covered, dry and warm while the dampened towel and washcloths are massaged over the body.
Additional Problem Areas
o Dressing is difficult for most dementia patients. Choose loose-fitting, comfortable clothes with easy zippers or snaps and minimal buttons. Reduce the person's choices by removing seldom-worn clothes from the closet. It's common for people with dementia to continue layering on clothes even though they are fully dressed. To facilitate dressing and support independence, lay out one article of clothing at a time, in the order it is to be worn. Remove soiled clothes from the room. Don't argue if the person insists on wearing the same thing again.
o Hallucinations (seeing or hearing things that others don't) and delusions (false beliefs, such as someone is trying to hurt or kill another) may occur as the dementia progresses. State simply and calmly your perception of the situation, but avoid arguing or trying to convince the person that their perceptions are wrong. Keep rooms well-lit to decrease shadows, and offer reassurance and a simple explanation if the curtains move from circulating air, or if a loud noise such as a plane or siren is heard. Distractions may help. Depending on the severity of symptoms, you might consider medication.
o Sexually inappropriate behavior, such as masturbating or undressing in public, lewd remarks, unreasonable sexual demands, even sexually aggressive behavior, may occur during the course of the illness. Remember, this behavior is caused by the disease. Develop an action plan to follow before the behavior occurs, i.e., what you will say and do if the behavior happens at home, around other relatives, friends, or paid caregivers. If you can, identify what triggers the behavior.
o Verbal outbursts such as cursing, arguing, and threatening often are expressions of anger or stress. React by staying calm and reassuring. Validate your loved one's feelings and then try to distract or redirect his attention to something else.
o “Shadowing” is when a person with dementia imitates and follows the caregiver, or constantly talks, asks questions, and interrupts. Like sundowning, this behavior often occurs late in the day and can be irritating for caregivers. Comfort the person with verbal and physical reassurance. Distraction or redirection might also help. Giving your loved one a job such as folding laundry might help to make her feel needed and useful.
o People with dementia may become uncooperative and resistant to daily activities such as bathing, dressing, and eating. Often this is a response to feeling out of control, rushed, afraid, or confused by what you are asking of them. Break each task into steps and, in a reassuring voice, explain each step before you do it. Allow plenty of time. Find ways to have them assist to their ability in the process, or follow with an activity that they can perform.
o Even with these many potential challenges, it's important to remember that these behaviors are often coping tactics for a person with deteriorating brain function. There's no question that dealing with these behaviors can make caregiving especially challenging.
For Additional Information:
Alzheimer's Association of Trinidad & Tobago
“Are you Worrying and Caring for a family member with a chronic illness?”
Join our Facebook Support Group: Self-Care for Family Caregivers - To connect with others in a similar situation.
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