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Learning New Skills to Aid Caregivers
"If you've seen one person with Alzheimer's disease, you've seen one person with Alzheimer's disease."
Everyone will experience dementia and Alzheimer's differently because the disease affects each person and family differently. As dementia progresses, there are notable changes in memory, thinking, language, behavior and function, all of which require caregivers to learn and practice different skills and strategies for managing day-to-day care. One of the first skills new caregivers must develop is communication.
Learn more about:
- How is communication affected by dementia?
- How can I enhance communication between the patient and caregiver?
- How to prevent conflict?
- What can I do about all of the repeated questions?
- What about made up stories?
- How can I prevent losing my temper?
- Understanding challenging behaviors?
- What should I do when a problem behavior occurs?
- What about refusing to bathe?
- What about wanting to wear the same clothing?
- What about hiding things and then accusing me of stealing them?
- What about wandering?
- What about disruptive sleep?
- Should I be concerned about violence?
- How do I diffuse arguments?
- What about physical aggression?
How is communication affected by
Loss of language abilities is a symptom of dementia. Loss of reading comprehension generally occurs first. One of the ways to determine if this is happening is if mail starts to pile up or the person begins to pay anything that even resembles a bill. Another clue is when the person either stops reading the paper or can't tell you what they have read.
When the person starts to stumble over words, remember that they also have trouble understanding what is being said. Talk more slowly, using simple phrases. Give the person extra time to respond. Use gestures and point to objects whenever possible.
If the person begins to use words that don't make sense, often called "jargon" or "word salad," try to find bits and pieces that relate to the person's world. The person may have a good understanding of the world around them, but may simply not be able to express him or herself.
It is acceptable to explore potential meanings with the person unless frustration begins to rise. If he/she becomes frustrated, distract them with another task and try again later. Do not be surprised if frustration and decreased inhibition result in the use of swear words. These words are simply that, words. You do not want to draw conclusions based on their use. A single consultation with a speech pathologist may be helpful to develop communication strategies.
If the person originally spoke a different language, it is expected that they will return to their native language. If no one in the family speaks that language, an interpreter may be able to help. However, confusion will be evident in their primary language as well.
Be mindful of your tone and body language as people with advanced dementia often get the majority of their interpersonal communications in this manner.
Finally, if the person develops slurred speech or problems swallowing, speak to their physician immediately. They may be at risk of apirating their food or saliva (breathing it into their lungs).
- Always be respectful.
- Create a calm environment. Minimize/eliminate background noise.
- Show signs of caring in your tone and facial expressions. Non-verbal body language is often well understood by persons with dementia and they are quick to note your frustration and may react to it.
- Simplify your conversations and questions. Allow enough time for the person to understand your message. It may take up to a minute for the person to try and respond back to you. Consider using more yes/no questions.
- Be encouraging if the person is having difficulty communicating with you or understanding your message. Reassure the person, "I know this is frustrating." When they have difficulty finding a word, consider asking them to explain in a different way. You may also try to guess the meaning and ask if you are correct.
- Use gestures. A gentle touch of the person's arm can assist in communicating your message. For example, greeting the person by name and extending your hand or greeting with a hug or kiss may result in a normal response.
- Touch, such as holding hands or a gentle massage, communicates warmth, connection, safety and love.
- Use music to serve as a universal language, and favorite foods as additional ways to maintain meaningful connections.
- Focus on providing pleasant (often one-direction) conversations using photos, picture books, fond memories, music or even a favorite movie.The focus of the conversation is not on content as much as it is appealing to emotion. If the person becomes over-stimulated, stop what you are doing.
- Maintain your sense of humor so that you are able to diffuse tense and frustrating moments.
- Do not assume the person is unable to understand what is being said. Never talk about the person as though he/she is not present.
- Avoid confrontation, and do not argue with the person over facts. There is a saying: "No one ever won an argument with an Alzheimer's patient."
- Avoid quizzing the person on names, dates or other facts. Not knowing the answer is embarrassing. Instead, try to use more yes/no questions.
The person may ask repeated questions for several reasons, such as: they can't remember asking the question, they have no sense of time or the question they are asking is not really what they want to know. When your loved one asks a question over and over, most often it has to do with when or where something will happen. These questions can become obsessive. Some strategies for dealing with repeated questions include:
- Never announce anything more than 24 hours in advance because it will lead to obsessive questions.
- When a question is asked more than once or twice, ask "Why are you asking?" Then address the underlying concern. For example: The person asks "What day is it?" You ask, "Why do you want to know?" The person says, "I don't want to miss church." You answer, "I will make sure you get to church on Sunday."
- Write an answer on an index card for the erson to carry in his/her pocket. When the question is asked you direct the person to read the card.
What about made up
One of the more frustrating effects of memory loss is called "confabulation." People with brain diseases, especially those that cause memory loss, tend to have their brains fill in the blanks when they can't remember what happens. So, they come up with stories that they believe are true. Confabulation is not a lie. It is a story the brain makes up. Trying to correct the person leads to anger and frustration for both of you. A good rule is that anything the person says is fine - as long as safety is not compromised.
How can I prevent
losing my temper?
Being on call 24/7 can wear the caregiver down. The fatigue and frustration of daily care can lead to more abrupt communication and nonverbal cues. This is just one of the many reasons why it's important to take planned breaks throughout the week!
When you feel yourself getting frustrated or impatient, take a quick break to compose yourself. Try not to be too hard on yourself. Remember that structure and routine are important to the person with dementia and will provide more predictability and sense of security. Exercise forgiveness. You will both make mistakes. The difference is that they will forget and you won't. Find a confidant who will allow you to openly share your feelings. Or, consider joining a support group. Self expression is vital to one's well-being. Your efforts in assisting and adapting to your loved one's communication abilities will make a difference!
How can I handle
Diseases that cause memory loss have symptoms that can baffle and overwhelm family members. Some of the most challenging and frightening problems rarely occur early in the disease, but may surface when least expected.
Examples might include the following:
- Demanding to leave during an activity or event the person had been looking forward to attending.
- Waking up in the middle of the night to get dressed and start the day.
- Not recognizing familiar settings, home, or family late in the afternoon.
- Accusing family members of stealing items the person has hidden; or blaming "outsiders" for taking things.
- Threatening family members with physical violence.
- Becoming irritated or belligerent late in the day.
- Refusing to bathe, go to the doctor, or go out socially for no apparent reason.
- Walking away from home or getting lost.
- Pacing back and forth without stopping.
- Telling stories you know aren't true.
- Thinking there are extra people or children in your home.
- Seeming selfish.
These behaviors may seem mean-spirited and purposeful, but they are simply symptoms of the illness. It is important to realize that the person cannot control these sudden behavior changes, but you can help to prevent or minimize them. While not everything works all the time, we can eliminate much of the "acting out" behavior by making simple changes in our behavior and the environment.
- Loses/misplaces things
- Repeats stories
- Forgets a recent conversation
- Mislabels names/words
- Dislikes social situations
- More likely to argue and get frustrated
- May accuse spouse of infidelity or acquaintances of stealing money
- May forget to pay bills
- May mismanage medications
- Doesn't show any interest in previously enjoyable activities
- Confused most of the time
- Wants to go home regardless of location
- May wander aimlessly and/or rummage through drawers
- Old memories begin to fade
- May say or do things that are inappropriate
- May exhibit inappropriate sexual behavior
- Resist/refuses caregiver's assistance with daily care
- Dislikes/refuses bathing
- Forgets to eat/drink
- May confuse silverware
- More confused during evening hours (sundowning)
- Gets day and night confused as sleep becomes more sporadic
- May not recognize family members and/or usual caregivers
- Misinterprets caregiver's assistance with personal care, which results in yelling or striking out
- Appears withdrawn
- Falls down when attempting to get up without help
- May only accept soft and sweet foods
- Loses weight if not offered food/fluids frequently
- Chokes more easily
- Sleeps in spurts throughout the day/night
- Fatigues easily, resulting in agitation
- Unmet needs may result in yelling or calling out
should I do when a problem behavior occurs?
You may be using effective communication skills and daily living tips, but despite your best efforts, one day your person begins to scream at you, doesn't recognize your home, or wanders away. These episodes frequently represent fears and/or unmet needs. Here are some general tips for managing these stressful events:
- Recognize the problem is temporary and will pass. Make sure you are safe until it does.
- Understand they are frightened or scared and don't argue with or confront the person. Let them know you intend to help and that you are sorry they are upset.
- Give the person something to do. Ask the person to help you do something.
- Get the person to a quiet place where he/she can rest.
- If it is the middle of the night, try to give them a snack and get them to an easy chair. Do not try to convince the person that it is night by showing them it is dark outside. Sometimes adding some favorite familiar music will be calming.
- If the person does not recognize his/her home, try driving round the block or reassure them that this is the place where you will spend the night (implying it is a hotel). Reassure them you will go home tomorrow.
- Try calling their child or close relative to offer them reassurance.
- If the episode does not resolve within an hour or so, contact your physician or visit the nearest urgent care center or emergency room. Do not try to get an agitated confused person into your car. Call the paramedics.
- Do not blame yourself. These episodes are a normal aspect of the disease progression.
- Do not become upset with yourself if you get angry. Anger is a natural response to stressful and unpleasant situations. Learning to manage these behaviors is a matter of trial and error.
What about refusing to
Many people go through a phase where they either refuse to bathe or tell you they have already finished their bath. This can be frustrating, especially if the person develops body odor. The first (and most important) thing to remember is that no one ever died from not bathing. Many older adults are modest about disrobing, or become afraid of bathwater or the shower. Begin by allowing the person to choose the time of day to bathe. Most people will choose the schedule that has been a lifelong habit such as first thing in the morning or right before bed. You can also try to remind him/her of a special occasion they must be clean for (e.g. "We can't go out for lunch until you bathe").
Make sure the room is warm and have a towel and fluffy robe handy to prevent chilling. If the person bathes well at the sink, that may be enough. Many older adults become afraid of falling in the tub and bathe while standing or sitting at the sink for the rest of their life. Consider purchasing some no-rinse soap at the local pharmacy to add to the sink water so you can save a step with rinsing
For those who prefer a bath, consider coloring the bathwater or adding bubble bath. Be sure to use a non-skid mat in the tub and make sure the water is not too hot. In the shower, you may find that a hand-held shower head is better and will prevent getting water in the person's face. Some caregivers will allow the person to bathe with underwear or will find it easier to shower with the person.
Distractions can be very helpful to diffuse the stress of bathing. Play their favorite music while bathing or sing with the person. Some even will do better eating a special treat during bath time.
Finally, don't take refusals to bathe personally and don't make it a battle. Sometimes hiring a certified nursing assistant to give a bath is necessary. It can give the caregiver a break and accomplish something the caregiver is not able to do.
wanting to wear the same clothing?
Wearing the same clothing is an indication that the person cannot handle change and is normal for people with memory loss. Rather than try to convince the person to wear something different, it is best to purchase several identical outfits. When the person takes off one set of dirty clothes, replace it with an identical clean set. This is often a good time to empty closests and drawers of clothing the person no longer wears. Make sure you have a picture of your loved one in this clothing in case they wander. You will be able to tell the police exactly what the person is wearing.
What about hiding things and
then accusing me of stealing them?
Hiding and losing things can be the most frustrating aspect of the disease for many caregivers. Understand that hiding things often represents a concern about theft and get to know some of the more common hiding places in your home. Families report hidden money, keys, jewelry, medications and many other things in places such as the trash, in the pages of books, under the paper, behind pictures/mirrors, under pillows or in bedding, in the freezer or fridge, wadded in tissues or toilet paper cardboard cylinders.
Try putting "clappers" on house and car keys so they beep when lost. Have a routine place, like a basket at the door and remind the person to drop keys in it when entering the home.
It is important to minimize the loss of money and valuables. Remove valuables from the house whenever possible. Remember, these possessions still belong to the person and cannot legally be dispersed without using the person's will. Take larger valuables such as the family crystal, silverware, and china, and pack them away. Label the carton "books," or something that does not attract attention and place them in a safe area, such as a closet or basement. Place rarely used jewelry in a safety deposit box. Take jewelry worn daily and have it appraised. Have the jeweler remove the most valuable stones and place them in a safety deposit box. Replace the valuable stones with cubic zirconium and return to the person. Never send jewelry you would mind losing with the person to a nursing home or assisted living facility.
It is important to remember that things will be lost. Make sure that there are duplicates of keys and other items. Also, losing the car keys is an excellent way to have your loved one stop driving. This is one example where you may decide to let the keys "stay lost," and not volunteer another set.
Wandering is a common issue with Alzheimer's and other dementias. It involves repeatedly walking, almost aimlessly, and often rummaging through things. Most people with dementia will wander at one point during the disease. While it can be annoying, it is generally harmless unless the person attempts to leave or falls down. It is important to put things away that might become broken and remove anything that might cause the person to trip, such as throw rugs or exposed electrical cords. Probably the best way to stop someone from wandering is to redirect them to activities such as music, crafts, helping you cook, etc. You may also try to strategically locate a recliner chair near an object of visual interest, such as a bird feeder, in order to encourage the person to stop and rest.
Eloping or leaving a specific area without the knowledge and approval of the caregiver poses a risk to the person with dementia. About 61 percent of people with dementia living at home wander away, compared to 23 percent of people living in nursing homes.
Caregivers must consider their loved ones at high risk, even though they have never left home before. Some precautions to follow:
- Joining the Safe Return Program (Medic Alert) through the Alzheimer's Association at www.alz.org or (800) 272-3900. The person wears an identification bracelet/necklace and is in an identified system to help locate the person.
- Keep doors and windows locked when not in use.
- Place slide bolts at the bottom of exterior and basement doors. The slide bolts will need to be easy to open, yet few people with dementia look down to find them.
- Ask the person where they are going and why. You may find something that can be stopped. For example: "John, where are you going?" He replies, "I'm going to work!" You reply, "But today is Saturday and you don't have to work today. Let's get some more rest so we can go to church in the morning."
- If the person is up at night, caregivers may consider hiring someone to stay while they get some sleep.
- Adult day programming is helpful to provide diversion and activities.
- Keep a recent photo and fact sheet with their name, address, nickname, your name, phone number, etc. in case the police need to find your person.
- Always have identification on the person with their name, address, phone number, and a note indicating that they suffer from memory loss.
- If the person elopes, consider it an emergency. People with dementia who elope rarely find their way home. Call the police immediately.
- Do not expect that walking the family dog will keep the person from becoming lost. If the person drops the leash, the dog will make it home, but the person will not.
- Make sure car keys are never in sight because people elope in cars with a high incidence of mortality.
- Know the potential hazards in your area, whether it be traffic, gangs, extreme weather or getting lost in the desert.
- Remember it is more likely that your person will elope… and if they elope once, they will do it again.
What about disruptive
The sleep/wake cycle can become more disturbed as the disease progresses. Some people will sleep for prolonged periods throughout the day and night. Others may wake at night and be more confused. This type of waking is usually a combination of things. Some common factors include: being overly tired from inadequate rest during the day, getting tired from the day's activities and going to bed too early, pain or aches at night, mild congestive failure at night that produces restlessness, and/or medication reactions (especially Aricept taken at night).
If someone does not sleep at night, increase their rest during the day. By mid-stage dementia, the ideal is a 30-minute rest late morning; a 1 1/2 hour nap after lunch, and a brief 15-30 minute snooze at about 4 p.m. In addition, develop a bedtime ritual that includes a milk product such as ice cream that is given at 9 p.m. Try giving a mild analgesic such as Tylenol at bedtime. Avoid over-the-counter sleep medication as it will worsen confusion!
If this does not help, contact the physician about medication interventions. There are a number of medications that can be tried depending on the pattern of sleep and wakefulness. It may take several tries before the right medication is found.
Should I be
concerned about violence?
Aggression can be a normal part of dementia. It can occur for many reasons, including too much demand placed on the person, psychosis (hallucinations, delusions or paranoia), a non-Alzheimer's presentation, and/or prior personality traits. While real physical aggression is relatively rare, verbal aggression or belligerence is relatively common. People with dementia become depressed from time to time, get frustrated, or may not see their deficits as clearly as their caregiver. And the person with the disease is also going through the grieving process, which also involves anger.
How do I handle verbal aggression? People with dementia who are angry don't always become violent or aggressive. Care should be taken to diffuse verbal aggression before the situation escalates. Remember, the goal is to get on the same side of the table as the person and regain emotional support. You have to suspend your previous notions about right and wrong and focus on making peace.
2. Apologizing - We know you haven't done anything wrong and you shouldn't have to apologize, but it can help diffuse an argument.
3. Playing dumb - "I don't know anything about this. Tell me more? How could this have happened? I don't understand?" These can help calm the situation.
4. Avoid trying to reason and explain as the person's ability to reason is not functioning properly.
5. Back off. Let time, and the memory loss, take over and heal the wound.
While certainly not a normal part of dementia, violence occasionally becomes a problem. When it occurs, caregivers often report mixed feelings of disbelief, embarrassment, guilt, shame, and more than just a bit of denial.
When you have a loved one who is aggressive towards you, this is a crisis. Suspend everything until the episode passes. This is not the time to get someone dressed for bed or dressed in the morning. This is not the time to insist on a shower. When a crisis presents, you want to back off, call 911, and stay back until help arrives - whether it be the arrival of a family member, paramedics, or police. Your safety is the single most important concern at this time. It is like the idea that when the house is on fire, you don't want to finish breakfast and get dressed before you call the fire department. In a behavioral crisis there are several essential steps:
- Step back and suspend all care until the crisis is over.
- Use care in your body language. Make sure you always approach from the front. Do not turn your back and make sure you give the person plenty of space. Turn OFF the TV/radio and stilence any additional noise/stimuli.
- Get help immediately. Do not stay alone in the house with a violent person. The person is in panic mode and cannot be counted on to inhibit impulses. Recognize the danger and call the doctor or 911. Many times police can reassure the person as he/she is terribly frightened. The uniform can work wonders.
- Don't try to transport the person in a car or let them try to drive the car.
- Act defensively. Plan an escape route. Lock yourself away from a violent person and take the cordless phone. Never be without your phone.
- Make sure you have a prescription for a mood-controlling medication and a psychiatry appointment for follow-up in the next day or two.
- Don't blame yourself.
- Know that this will likely happen again. This is not a time to let family members "vote" to convince you that you are overreacting and that this person would never try to hurt you.
- Do not rule out a psychiatric admission.
- Reach out for help. Keep your family and doctor informed.
Finally, if you see warning signs of possible aggression, proactively inform your family and doctor. That way they know you are not overreacting.