Alzheimer’s Disease: Managing Eating, Drinking, and Swallowing Problems

(Alzheimer’s Australia) Meal times provide us with an opportunity to spend time with our family and friends, as well as sharing food together. When caring for someone with dementia meal times can sometimes become stressful. Loss of memory and problems with judgment can cause difficulties in relation to eating and nutrition for many people with dementia. There are many ways to improve the situation.

Loss of Appetite

Forgetting how to chew and swallow, ill-fitting dentures, insufficient physical activity, and being embarrassed by difficulties can all result in a loss of appetite.

What to try

  • Check with the doctor to make sure that there are no treatable causes for loss of appetite, such as acute illness or depression
  • Offer meals at regular times each day
  • Allow the person to eat when hungry
  • Encourage physical exercise
  • Provide balanced meals to avoid constipation
  • Try a glass of juice, wine or sherry, if medications permit, before the meal to whet appetite
  • Offer ice cream or milk shakes
  • Try to prepare familiar foods in familiar ways, especially foods that are favourites
  • Encourage eating all or most of one food before moving on to the next: some people can become confused when the tastes and textures change
  • Try to make mealtimes simple, relaxed and calm. Be sure to allow enough time for a meal. Assisting a very impaired person can take up to an hour
  • Consult a doctor if there is a significant weight loss (such as 2.5kg in 6 weeks)
  • Check with the doctor about vitamin supplements.

Overeating or Insatiable Appetite

What to try

  • Leaving snack foods on the table may be enough to satisfy some people
  • Try 5-6 small meals each day
  • Have low calorie snacks available, such as apples and carrots
  • Consider whether other activities such as walks, or increased social contacts may help
  • Lock some foods in cupboards, if necessary.

Sweet Cravings

What to try

  • Check medications for side effects. Some antidepressant medications can cause a craving for sweets
  • Try milk shakes, egg nogs or low calorie ice cream.

Mouth, Chewing, and Swallowing Problems

Some causes of problems with eating may relate to the mouth. A dry mouth, or mouth discomfort from gum disease or ill-fitting dentures are common problems.

What to try

  • Have a dental check up of gums, teeth and dentures
  • Moisten food with gravies and sauces if a dry mouth is causing problems
  • For chewing problems, try light pressure on the lips or under the chin, tell the person when to chew, demonstrate chewing, moisten foods or offer small bites one at a time
  • For swallowing problems, remind the person to swallow with each bite, stroke the throat gently, check the mouth to see if food has been swallowed, do not give foods which are hard to swallow, offer smaller bites and moisten food
  • Consult the doctor if choking problems develop.

At the Table

Pouring a glass of juice into a bowl of soup, buttering the serviette or eating dessert with a knife indicate that a person with dementia is having difficulty at the dinner table.

What to try

  • Serve one course at a time and remove other distracting items from the table such as extra cutlery glasses or table decorations
  • Ensure that the crockery is plain and is a different colour to the plain table cloth
  • If the use of cutlery is too difficult serve finger food
  • Eat with the person with dementia so that they can copy you
  • Make sure that they are not rushed
  • Keep noise and activities in the environment to a minimum
  • Ensure there is adequate lighting
  • Serve familiar food.

Other Considerations

  • Keep eating simple. Not all food has to be eaten with cutlery if this is becoming difficult. Finger food can be a nutritious and easy alternative
  • Keep in mind a person’s past history with food. They may have always had a small appetite, been a voracious eater or had a sweet tooth Watch food temperatures. While warm food is more appetising, some people with dementia have lost the ability to judge when food is hot or cold. Beware of using Styrofoam cups which not only hold the heat for a long time, but also tip over easily
  • Spoiled food in the refrigerator, hiding food or not eating regularly may all be signs that someone living alone is in need of more support
  • Many people with dementia do not get enough fluids because they may forget to drink or may no longer recognise the sensation of thirst. Be sure to offer regular drinks of water, juice or other fluids to avoid dehydration
  • Many eating problems are temporary and will change as the person’s abilities deteriorate.
Citation

Adapted from Understanding difficult behaviours, by Anne Robinsons, Beth Spencer and Laurie White.

Alzheimer’s Australia

http://www.fightdementia.org.au/services/eating.aspx

 

Understanding How Alzheimer’s Changes People

(Alzheimer’s Disease Education and Referral Center) Alzheimer’s disease is an illness of the brain. It causes large numbers of nerve cells in the brain to die. This affects a person’s ability to remember things and think clearly. People with AD become forgetful and easily confused. They may have a hard time concentrating and behave in odd ways. These problems get worse as the illness gets worse, making your job as caregiver harder.

It’s important to remember that the disease, not the person with AD, causes these changes. Also, each person with AD may not have all the problems we talk about in the publication.

The following sections describe the three main challenges that you may face as you care for someone with AD:

  1. changes in communication skills
  2. changes in personality and behavior
  3. changes in intimacy and sexuality

Each section includes information on how to cope with these challenges. If you would rather get a copy of this publication for your own use (than read it here), click: Print this publication (Download PDF 5.96 MB) »

1. Challenge: changes in communication skills

“Talking with Dad is hard. Often, I don’t understand what he is trying to say or what he wants. We both get pretty frustrated sometimes.”

 

Communication is hard for people with AD because they have trouble remembering things. They may struggle to find words or forget what they want to say. You may feel impatient and wish they could just say what they want, but they can’t. It may help you to know more about common communication problems caused by AD. Once you know more, you’ll have a better sense of how to cope.

Here are some communication problems caused by AD:

  • Trouble finding the right word when speaking
  • Problems understanding what words mean
  • Problems paying attention during long conversations
  • Loss of train-of-thought when talking
  • Trouble remembering the steps in common activities, such as cooking a meal, paying bills, getting dressed, or doing laundry
  • Problems blocking out background noises from the radio, TV, telephone calls, or conversations in the room
  • Frustration if communication isn’t working
  • Being very sensitive to touch and to the tone and loudness of voices

Also, AD causes some people to get confused about language. For example, the person might forget or no longer understand English if it was learned as a second language. Instead, he or she might understand and use only the first language learned, such as Spanish.

How to cope with changes in communication skills

The first step is to understand that the disease causes changes in these skills. The second step is to try some tips that may make communication easier. For example, keep the following suggestions in mind as you go about day-to-day care.

To connect with a person who has AD:

  • Make eye contact to get his or her attention, and call the person by name.
  • Be aware of your tone and how loud your voice is, how you look at the person, and your “body language.” Body language is the message you send just by the way you hold your body. For example, if you stand with your arms folded very tightly, you may send a message that you are tense or angry.
  • Encourage a two-way conversation for as long as possible. This helps the person with AD feel better about himself or herself.
  • Use other methods besides speaking to help the person, such as gentle touching to guide him or her.
  • Try distracting someone with AD if communication creates problems. For example, offer a fun activity such as a snack or a walk around the neighborhood.
“Every few months I sense that another piece of me is missing. My life… my self… are falling apart. I can only think half-thoughts now. Someday I may wake up and not think at all.”
— From “The Loss of Self”

 

To encourage the person with AD to communicate with you:

  • Show a warm, loving, matter-of-fact manner.
  • Hold the person’s hand while you talk.
  • Be open to the person’s concerns, even if they are hard to understand.
  • Let him or her make some decisions and stay involved.
  • Be patient with angry outbursts. Remember, it’s the illness “talking.”
  • If you become frustrated, take a “timeout” for yourself.

To speak effectively with a person who has AD:

  • Offer simple, step-by-step instructions.
  • Repeat instructions and allow more time for a response. Try not to interrupt.
  • Don’t talk about the person as if he or she isn’t there.
  • Don’t talk to the person using “baby talk” or a “baby voice.”

Here are some examples of what you can say:

  • “Let’s try this way,” instead of pointing out mistakes
  • “Please do this,” instead of “Don’t do this”
  • “Thanks for helping,” even if the results aren’t perfect

You also can:

  • Ask questions that require a yes or no answer. For example, you could say, “Are you tired?” instead of “How do you feel?”
  • Limit the number of choices. For example, you could say, “Would you like a hamburger or chicken for dinner?” instead of “What would you like for dinner?”
  • Use different words if he or she doesn’t understand what you say the first time. For example, if you ask the person whether he or she is hungry and you don’t get a response, you could say, “Dinner is ready now. Let’s eat.”
  • Try not to say, “Don’t you remember?” or “I told you.”

Helping a Person Who Is Aware of Memory Loss

AD is being diagnosed at earlier stages. This means that many people are aware of how the disease is affecting their memory. Here are tips on how to help someone who knows that he or she has memory problems:

  • Take time to listen. The person may want to talk about the changes he or she is noticing.
  • Be as sensitive as you can. Don’t just correct the person every time he or she forgets something or says something odd. Try to understand that it’s a struggle for the person to communicate.
  • Be patient when someone with AD has trouble finding the right words or putting feelings into words.
  • Help the person find words to express thoughts and feelings. For example, Mrs. D cried after forgetting her garden club meeting. She finally said, “I wish they stopped.” Her daughter said, “You wish your friends had stopped by for you.” Mrs. D nodded and repeated some of the words. Then Mrs. D said, “I want to go.” Her daughter said, “You want to go to the garden club meeting.” Again, Mrs. D nodded and repeated the words.
  • Be careful not to put words in the person’s mouth or “fill in the blanks” too quickly.
  • As people lose the ability to talk clearly, they may rely on other ways to communicate their thoughts and feelings.

For example, their facial expressions may show sadness, anger, or frustration. Grasping at their undergarments may tell you they need to use the bathroom.

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Alzheimer’s Disease: Potential Causes of Behavioral Symptoms

(Alzheimer’s Foundation of America) While the underlying cause of the behavioral symptoms of Alzheimer’s disease and related dementias is the illness itself—changes in the brain due to the death of brain cells, there are multiple other factors that may trigger the various behaviors and emotions that can unfold during the progression of the disease. Understanding the cause and effect can help family and professional caregivers better manage situations that may arise.

Reaction to Loss

We all rely on input from our environment to guide us in activities and relationships. An individual with dementia has lost both the benefit of such input and the ability to inform us of their internal world. This absence causes fear, insecurity and frustration, which may present in the form of aggression and agitated behavior.

Some Suggestions:

  • Provide reassurance.
  • Speak in a calm voice.
  • Promote a sense of security and comfort.

Inability to Meet Basic Needs

As a result of cognitive impairment and psychiatric symptoms, a person’s basic needs might not be met. The resulting hunger, dehydration, elimination problems and fatigue can produce behavioral changes. Individuals with dementia may stay hungry because of, for example, their inability to feed themselves, depression or loss of muscle coordination. They may show their discomfort through agitated and aggressive behavior.

Likewise, they may forget how to pour water into a cup or never ask for a drink due to their inability to communicate. Dehydration can lead to urinary tract infection, constipation and fever—putting individuals at a high risk for delirium and consequently more behavioral problems.

Similarly, individuals may forget where or what the bathroom is, and eventually may not recognize the internal cues for urination or a bowel movement. Elimination problems may prompt agitation, aggression,wandering, pacing, and incontinence. Compounding this, they may develop urinary tract infections or constipation which, left untreated, could result in delirium.

Lastly, people with dementia may get tired easily because of wandering, pacing and disruption of the sleep-wake cycle. Fatigue often leads to irritability and aggression.

Some Suggestions:

  • Offer verbal and physical assistance during meals.
  • Serve foods that the individual likes.
  • Provide adequate snacks and supplements.
  • Prevent distraction during meals by rearranging the environment
  • Serve pre-cut or finger food if using utensils becomes difficult.
  • Consult with a healthcare professional about swallowing problems.
  • Schedule fluid intake to ensure six to eight glasses of liquid per day.
  • Avoid coffee, tea beverages with caffeine that act as diuretics.
  • Establish a routine for using the toilet, such as assisting them to the bathroom every two hours.
  • A commode, obtained at any medical supply store, can be left in the bedroom at night for easy access.
  • Put up signs (with illustrations) to indicate the bathroom door.
  • Use easy-to-remove clothing, such as those with elastic waistbands.
  • Try soothing music or a massage to induce sleep.
  • Reduce environmental stimuli.
  • Encourage short periods of napping to prevent exhaustion.

Co-Existing Medical Problems

Pain and discomfort from a medical problem (i.e., dental pain, urinary tract infection) or medication side effects can go unnoticed because of the individual’s inability to report it due to poor memory and/or loss of verbal skills. In addition, caregivers may have difficulty gauging the individual’s pain because the person does not respond to questions. As a result, these individuals may not receive necessary medication or treatment. Those who are in pain and discomfort tend to exhibit verbal and physical aggression, restlessness, wandering and pacing.

Some Suggestions:

  • Become familiar with the person’s medical history.
  • Assess their non-verbal behavior to help identify the cause of distress.
  • Watch for signs of urinary tract infection and other medical conditions.
  • Monitor medications for side effects.

Co-Existing Psychiatric Disorders

Individuals with a previous diagnosis of psychiatric disorders, such as schizophrenia, depression or mania, and those with mental retardation are likely to exhibit more behavioral problems when they develop dementia than other individuals without psychiatric illnesses. Those with hallucinations or delusions and who are depressed or manic tend to exhibit more aggressive and agitated behavior.

Some Suggestions:

  • Consult with your physician about available medications, such as anti-depressants, anti-psychotics and other mood stabilizers, to control severe symptoms, if appropriate. Also discuss non-drug interventions, like behavioral modifications and environmental changes.
  • Provide reassurance.
  • Distract and redirect with other activities.

Environmental Factors

Excessive noise, poor or glaring lighting and cold temperature in the home or a long-term care facility, and overcrowding in a group setting can increase agitation, screaming and aggressive behavior. Any change in the environment or routines, such as bathing and eating, can cause frustration and agitation. As well, boredom that results from lack of activities, and conflicts among residents in a group setting can manifest in behavioral changes.

Some Suggestions:

  • Reduce excess stimuli, such as the TV or radio.
  • Elevate the room temperature.
  • Ensure adequate lighting.
  • Carefully and gradually introduce changes in routine or the environment.
  • Provide activities that are simple and creative.
  • In a group setting, staff should anticipate the characteristics of each resident and adjust the environment accordingly.

Sensory Impairment

Individuals with hearing or visual impairments tend to be more paranoid, hallucinate more, and feel more frightened and frustrated. For example, those with poor eyesight may not eat their food or they may be at risk for falls.

Some Suggestions:

  • Assess vision and hearing.
  • Ensure that individuals who wear glasses or hearing aids have them in place.
  • Evaluate problems such as cataracts, glaucoma or other eye diseases, and correct them with surgery, if feasible, or by creative environmental changes.

Factors Related to the Caregiver

A caregiver’s attitude and knowledge of dementia affect the care of individuals with the disease. Individuals usually respond to a caregiver’s mood and cues accordingly.

Some Suggestions:

  • Become educated about the disease.
  • Stick to routines.
  • Learn effective communication techniques and how to cope with specific behavioral challenges.
  • Use a calm tone of voice combined with gentle touch to convey reassurance.
  • Validate the person’s feelings.
  • Speak slowly and simply.
  • Distract and redirect to positive activities.
  • Be patient and kind.
  • Remember that behavior problems result from the disease. Do not take things that the person says and does personally; it is the disease speaking.
  • Recall fond memories from the past, including ways in which your loved one cared for and supported you in the past. This will increase your ability to be patient and understanding in difficult situations.
  • Reach out to friends and family for support, educate them about Alzheimer’s disease, and consider sharing with them the specific symptoms that your loved one is experiencing. This way, they will be better able to both support you and interact positively with your loved one.
  • Acknowledge your own feelings, possibly sadness, anger or frustration, and consider joining a caregiver support group or attending individual counseling.
  • Remember to practice good self-care—physically and mentally. Try to eat nutritious meals, get a good night’s sleep, exercise regularly, and make time for your own interests and friendships. The better you take care of yourself, the better you can care for your loved one.
Citation

http://www.alzfdn.org/EducationandCare/causes.html

©2015 Alzheimer’s Foundation of America. All rights reserved.

 

Understanding Dementia Behaviors

(Family Caregiver Alliance) Caring for a loved one with dementia poses many challenges for families and caregivers. People with dementia from conditions such as Alzheimer’s and related diseases have a progressive brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, or take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behavior.

This factsheet provides some practical strategies for dealing with the troubling behavior problems and communication difficulties often encountered when caring for a person with dementia.

To get your own copy of this factsheet, go here: Understanding Dementia Behaviors


 

Ten Tips for Communicating with a Person with Dementia

We aren’t born knowing how to communicate with a person with dementia—but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.

  1. Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
  2. Get the person’s attention. Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
  3. State your message clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.
  4. Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.
  5. Listen with your ears, eyes and heart. Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
  6. Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
  7. When the going gets tough, distract and redirect. When your loved one becomes upset, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
  8. Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
  9. Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
  10. Maintain your sense of humor. Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.

Handling Troubling Behavior

Some of the greatest challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. You can best meet these challenges by using creativity, flexibility, patience and compassion. It also helps to not take things personally and maintain your sense of humor.

To start, consider these ground rules:

We cannot change the person. The person you are caring for has a brain disorder that shapes who he has become. When you try to control or change his behavior, you’ll most likely be unsuccessful or be met with resistance. It’s important to:

  • Try to accommodate the behavior, not control the behavior. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable.
  • Remember that we can change our behavior or the physical environment. Changing our own behavior will often result in a change in our loved one’s behavior.

Check with the doctor first. Behavioral problems may have an underlying medical reason: perhaps the person is in pain or experiencing an adverse side effect from medications. In some cases, like incontinence or hallucinations, there may be some medication or treatment that can assist in managing the problem.

Behavior has a purpose. People with dementia typically cannot tell us what they want or need. They might do something, like take all the clothes out of the closet on a daily basis, and we wonder why. It is very likely that the person is fulfilling a need to be busy and productive. Always consider what need the person might be trying to meet with their behavior—and, when possible, try to accommodate them.

Behavior is triggered. It is important to understand that all behavior is triggered—it doesn’t occur out of the blue. It might be something a person did or said that triggered a behavior or it could be a change in the physical environment. The root to changing be-havior is disrupting the patterns that we create. Try a different approach, or try a different consequence.

What works today, may not tomorrow. The multiple factors that influence troubling behaviors and the natural progression of the disease process means that solutions that are effective today may need to be modified tomorrow—or may no longer work at all. The key to managing difficult behaviors is being creative and flexible in your strategies to address a given issue.

Get support from others. You are not alone—there are many others caring for someone with dementia. Locate your nearest Area Agency on Aging, the local chapter of the Alzheimer’s Association, a Caregiver Resource Center or one of the groups listed below in Resources to find support groups, organizations and services that can help you. Expect that, like the loved one you are caring for, you will have good days and bad days. Develop strategies for coping with the bad days (see the FCA Fact Sheet, Dementia, Caregiving and Controlling Frustration).

The following is an overview of the most common dementia-associated behaviors with suggestions that may be useful in handling them. You’ll find additional resources listed at the end of this Fact Sheet.

Wandering

People with dementia walk, seemingly aimlessly, for a variety of reasons, such as boredom, medication side effects or to look for “something” or someone. They also may be trying to fulfill a physical need—thirst, hunger, a need to use the toilet or exercise. Discovering the triggers for wandering are not always easy, but they can provide insights to dealing with the behavior.

  • Make time for regular exercise to minimize restlessness.
  • Consider installing new locks that require a key. Position locks high or low on the door; many people with dementia will not think to look beyond eye level. Keep in mind fire and safety concerns for all family members; the lock(s) must be accessible to others and not take more than a few seconds to open.
  • Try a barrier like a curtain or colored streamer to mask the door. A “stop” sign or “do not enter” sign also may help.
  • Place a black mat or paint a black space on your front porch; this may appear to be an impassable hole to the person with dementia.
  • Add “child-safe” plastic covers to doorknobs.
  • Consider installing a home security system or monitoring system designed to keep watch over someone with dementia. Also available are new digital devices that can be worn like a watch or clipped on a belt that use global positioning systems (GPS) or other technology to track a person’s whereabouts or locate him if he wanders off..
  • Put away essential items such as the confused person’s coat, purse or glasses. Some individuals will not go out without certain articles.
  • Have your relative wear an ID bracelet and sew ID labels in their clothes. Always have a current photo available should you need to report your loved one missing. Consider leaving a copy on file at the police department or registering the person with the Alzheimer’s Association Safe Return program (see Resources).
  • Tell neighbors about your relative’s wandering behavior and make sure they have your phone number.

Incontinence

The loss of bladder or bowel control often occurs as dementia progresses. Sometimes accidents result from environmental factors; for example, someone can’t remember where the bathroom is located or can’t get to it in time. If an accident occurs, your understanding and reassurance will help the person maintain dignity and minimize embarrassment.

  • Establish a routine for using the toilet. Try reminding the person or assisting her to the bathroom every two hours.
  • Schedule fluid intake to ensure the confused person does not become dehydrated. However, avoid drinks with a diuretic effect like coffee, tea, cola, or beer. Limit fluid intake in the evening before bedtime.
  • Use signs (with illustrations) to indicate which door leads to the bathroom.
  • A commode, obtained at any medical supply store, can be left in the bedroom at night for easy access.
  • Incontinence pads and products can be purchased at the pharmacy or supermarket. A urologist may be able to prescribe a special product or treatment.
  • Use easy-to-remove clothing with elastic waistbands or Velcro closures, and provide clothes that are easily washable.

Agitation

Agitation refers to a range of behaviors associated with dementia, including irritability, sleeplessness, and verbal or physical aggression. Often these types of behavior problems progress with the stages of dementia, from mild to more severe. Agitation may be triggered by a variety of things, including environmental factors, fear and fatigue. Most often, agitation is triggered when the person experiences “control” being taken from him.

  • Reduce caffeine intake, sugar and junk food.
  • Reduce noise, clutter or the number of persons in the room.
  • Maintain structure by keeping the same routines. Keep household objects and furniture in the same places. Familiar objects and photographs offer a sense of security and can suggest pleasant memories.
  • Try gentle touch, soothing music, reading or walks to quell agitation. Speak in a reassuring voice. Do not try to restrain the person during a period of agitation.
  • Keep dangerous objects out of reach.
  • Allow the person to do as much for himself as possible—support his independence and ability to care for himself.
  • Acknowledge the confused person’s anger over the loss of control in his life. Tell him you understand his frustration.
  • Distract the person with a snack or an activity. Allow him to forget the troubling incident. Confronting a confused person may increase anxiety.

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.

  • Provide plenty of reassurance and comfort, both in words and in touch.
  • Try distracting with a snack or activity.
  • Avoid reminding them that they just asked the same question. Try ignoring the behavior or question and distract the person into an activity.
  • Don’t discuss plans with a confused person until immediately prior to an event.
  • You may want to try placing a sign on the kitchen table, such as, “Dinner is at 6:30” or “Lois comes home at 5:00” to remove anxiety and uncertainty about anticipated events.
  • Learn to recognize certain behaviors. An agitated state or pulling at clothing, for example, could indicate a need to use the bathroom.

Paranoia

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.

  • If the confused person suspects money is “missing,” allow her to keep small amounts of money in a pocket or handbag for easy inspection.
  • Help them look for the 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.
  • Take time to explain to other family members and home-helpers that suspicious accusations are a part of the dementing illness.
  • 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.”

Sleeplessness/Sundowning

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.

  • Increase daytime activities, particularly physical exercise. Discourage inactivity and napping during the day.
  • 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.
  • 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.
  • 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.
  • Make sure the house is safe: block off stairs with gates, lock the kitchen door and/or put away dangerous items.
  • 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.
  • 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.

Eating/Nutrition

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.

  • 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.
  • Make mealtimes a special time. Try flowers or soft music. Turn off loud radio programs and the TV.
  • 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.
  • 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.
  • 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.
  • If chewing and swallowing are an issue, try gently moving the person’s chin in a chewing motion or lightly stroking their throat to encourage them to swallow.
  • 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.

Bathing

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.

  • 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 talcum 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.
  • 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.
  • 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.
  • 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.
  • If hair washing is a struggle, make it a separate activity. Or, use a dry shampoo.
  • If bathing in the tub or shower is consistently traumatic, a towel bath provides a soothing alter-native. A bed bath has traditionally been done 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. For more information, see the book Bathing Without a Battle (details in the Recommended Reading section below), or visit www.bathingwithoutabattle.unc.edu/.

Additional Problem Areas

  • 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. 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.
  • 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 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 a loud noise such as a plane or siren is heard. Distractions may help. Depending on the severity of symptoms, you might consider medication.
  • Sexually inappropriate behavior, such as masturbating or undressing in public, lewd remarks, unreasonable sexual demands, even sexually aggressive or violent behavior, may occur during the course of the illness. Remember, this behavior is caused by the disease. Talk to the doctor about possible treatment plans. 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 adults or children. If you can, identify what triggers the behavior.
  • 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.
  • “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.
  • 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.

Credits and Recommended Reading

  • Bathing Without a Battle, by Ann Louise Barrick, Joanne Rader, Beverly Hoeffer and Philip Sloane, (2002), Springer Publishing, (877) 687-7476.
  • 36 Hour Day: Family Guide to Careign for People who have Alzheimer’s Disease, Related Dementias and Memory Loss, (2011), Johns Hopkins Press Health Book.
  • Steps to enhancing communications: Interacting with persons with Alzheimer’s disease. Chicago, IL: Alzheimer’s Association (2012), 081312.01 770-10-0018
  • The Validation Breakthrough: Simple Techniques for Communicating with People with “Alzheimer’s-Type Dementia,” Naomi Feil , 2nd Edition 2002, Health Professions Press, Baltimore, MD, (410) 337-8539.
  • Understanding Difficult Behaviors:Some practical suggestions for coping with Alzheimer’s disease and related illnesses, A. Robinson, B. Spencer, and L.White, (2001), Eastern Michigan University, Ypsilanti, MI, (734) 487-2335.

Resources

Family Caregiver Alliance
National Center on Caregiving

785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
caregiver.org
[email protected]

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s and other debilitating health conditions that strike adults.

FCA Publications

FCA Fact Sheets. All Family Caregiver Alliance Fact Sheets are available free online. Printed versions are avilable for purchase for each title—send your requests to FCA Publications, 785 Market Street, Suite 750, San Francisco, CA 94103.

Other Web Sites

Alzheimer’s Disease Education and Referral (ADEAR) Center
(800) 438-4380
www.alzheimers.org

This service of the National Institute on Aging offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and research related to Alzheimer’s disease.

Eldercare Locator
(800) 677-1116
www.eldercare.gov

This service of the Administration on Aging offers information about and referrals to respite care and other home and community services offered by state and Area Agencies on Aging.

Alzheimer’s Association Safe Return Program
(800) 272-3900
www.alz.org/SafeReturn

A nationwide program that identifies people with dementia who wander away and returns them to their homes. For a registration fee, families can register their loved one in a national confidential computer database. They also receive an identification bracelet or necklace and other identification and educational materials.

Citation

https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors

This fact sheet was prepared by Family Caregiver Alliance in cooperation with California’s statewide system of Caregiver Resource Centers. Reviewed by Beth Logan, M.S.W., Education and Training Consultant and Specialist in Dementia Care. Funded by the California Department of Mental Health. © 2004, 2008 Family Caregiver Alliance. All rights reserved.

Copyright © 2015 Family Caregiver Alliance. All rights reserved.

 

Alzheimer’s and Alleviating Symptoms

(UCSF Memory and Aging Center) Aggressive behavior may become more common in some forms of dementia due to the brain’s inability to control impulsive actions.

Aggression

Tips for preventing aggression:

  1. Ensure the person does not have pain and see the person’s regular doctor for any illness. A change in behavioral symptoms may be triggered by even minor illnesses such as a cold or by pain such as arthritis.
  2. When talking to the person, do not use sarcasm or abstract thinking. Instead, be concrete.
  3. Reduce external distractions when talking, e.g., TV, radio, busy places.
  4. Maintain routine when possible. If necessary, make changes gradually.
  5. Don’t rush the person.
  6. Do not argue or insist on being right.

Tips for managing aggression:

  1. Maintain your safety and the safety of and others. Call 911 if you need help. Do not try to restrain your loved one by yourself.
  2. Keep calm, lower your tone of voice, be aware of body language (may or may not be recognized by patient but will assist in calming you).
  3. If there is an incident of aggression, think about what happened prior to the problem that may have triggered it.
  4. Do not argue or rationalize.
  5. Validate the person’s feelings and empathize (may or may not respond).
  6. Offer a distraction: a snack, a walk, a favorite activity.
  7. If nothing seems to work, take a break and go in to the next room if possible.

Apathy

Apathy can also be particularly tough for the caregiver to deal with if you forget that it is not personal, it’s the disease changing them.

To increase participation:

  1. See if you can figure out what triggers the anxious or agitated behavior – you might be able to avoid setting off the behavior by changing the environment or routine.
  2. Make sure your loved one isn’t in pain, hungry or thirsty or doesn’t need to use the bathroom – they may be agitated because they can’t express what they need.
  3. If they are aggressive or angry, don’t touch them – it may be threatening instead of comforting.
  4. Talk about things that they love to help calm them.
  5. Speak in a calm voice and don’t let their agitation agitate you.
  6. Try to make sure your loved one is getting enough sleep.
  7. Try not to rush or hurry them.
  8. Follow a regular daily schedule.
  9. Eliminate stressful stimuli and maintain a quiet environment.
  10. Try covering your loved one’s eyes with a mask or cloth to reduce fear or anxiety.
  11. Don’t try to reason with person (this is limited due to inability to understand consequences).
  12. Prompt the person to do the activity.
  13. Encourage the person.
  14. Start an activity for them.
  15. Mirror activity (physically show the person what you want them to do).
  16. Don’t take over activity.

Compulsive Behavior

A person with dementia may:

  • Check locks and doors over and over
  • Have rigid walking patterns
  • Hoard items
  • Count over and over
  • Go to toilet frequently

As the caregiver, you need to decide if the behavior is a problem or just an annoyance that can be ignored. While it seems compulsive to you, it may give the person with FTD a sense of purpose.

If you need to redirect the behavior, try this:

  1. Distract the person from what they are doing.
  2. Consider that the person may be bored or anxious and trying to find something to do.
  3. See if you can use the compulsion as activity or turn it into something useful (like letting the person fold laundry over and over).

Confusion and Impaired Thinking

Progressive dementia can cause confusion and impaired thinking, which can in turn add to frustration, distress and agitation.

The following things may help:

  1. Limit environmental activity and noise which may add to confusion.
  2. Follow a regular daily routine.
  3. Try reminiscing with your loved one by telling stories from your shared past (“I remember when …”).
  4. Watch how visitors affect your loved one and keep visits short if they cause distress.
  5. If you have outside help, try to keep the same people over time. New faces may cause anxiety.
  6. Limit choices when you can – present only two options for dinner or two options for clothing and let your loved one choose. Too many choices can be overwhelming.
  7. Minimize distractions like television and radio so that it is easier to focus on the task at hand.
  8. Speak to them with a calming tone and comfort them.
  9. Speak in shorter, simpler sentences.
  10. See if cognitive activities like puzzles, block stacking or picture matching help and interest them.

Delusions

A few people with dementia may have abnormal beliefs called delusions. These delusions can frighten them or cause unusual behavior.

Try this:

  1. Avoid arguing or disagreeing with your loved one by denying the delusion
  2. Avoid contributing your opinion of the delusion.
  3. Respond to the feelings the delusion is causing in your loved one by reassuring and comforting your loved one, i.e., “I see that you are upset. Let’s figure this out together.”
  4. Try to redirect your loved one from the delusion to a soothing activity.
  5. Turn off a television, radio, or computer if you think any of these may be causing the delusion – your loved one may not be able to tell the difference between entertainment and reality.
  6. Limit environmental activity and noise.
  7. Use a calm quiet approach and create a quiet environment.
  8. Keep areas well lit so things in the room are not misidentified.

Depression and Social Withdrawal

If the patient is experiencing sadness and isn’t interacting much, try this:

  1. Try to keep your loved one engaged with activities that suit his/her abilities – card games, reading aloud, talking
  2. Physical exercise helps minimize depression – if their condition permits, walk, swim, garden or do something else they enjoy
  3. Visitors might help improve mood, especially in the early stages, but watch for signs of agitation or fatigue
  4. Validate and accept their feelings – don’t try to force them to be happy and social
  5. Talk to your doctor about medications that can help

Difficulty Swallowing

Some people with motor neuron disease may develop difficulty eating and swallowing (dysphagia) as their motor problems progress.

Try this:

  1. Discuss preparing pureed food or thickened liquids with your medical care provider.
  2. Try nutritional drinks to supplement a decreased diet (ask your health care team for suggestions).
  3. Find out how to give regular mouth care, which can comfort your loved one tremendously.
  4. Let your loved one guide their food choices – their needs may alter as the disease progresses.
  5. Ask your loved one’s Doctor to request a swallowing evaluation.

Eating Problems

People with FTD may develop a strong “sweet tooth”, want to eat only certain foods or have odd combinations of food. They may also eat inappropriately - eat off the plates of strangers in a restaurant or cram too much food into their mouths.

If you need help managing eating behaviors, try these tips:

  1. If there are behavioral problems around mealtime, try to figure out the trigger so you can avoid it – is it a particular food? Time of day? The way things are done?
  2. Let your loved one direct their diet but see if you can substitute healthier options less healthy ones (fruit instead of candy).
  3. Limit the amount of unhealthy snack foods in the house.
  4. Serve smaller portions on smaller plates or bowls so that they look larger.
  5. Try nutritional drinks to supplement a less varied diet (ask your health care team for suggestions).
  6. If chewing and swallowing become difficult, consult your health care team about pureed foods and thickened liquids that might be easier to manage.
  7. If you have a meal with friends, prepare them in advance, so that you do not feel embarrassed. You will be surprised how understanding some friends can be.

Hallucinations

A few people with neurodegenerative disease may see or hear things that no one else does or experience them differently than the others around them (hallucinations). It can frighten them.

Try this:

  1. Avoid arguing or disagreeing with your loved one by denying the hallucination; try to be reassuring and comforting instead.
  2. Avoid pretending you also see/hear the hallucination in order to make your loved one feel better.
  3. It’s okay to say, “I don’t see/hear what you do, but I believe you are seeing/hearing it.”
  4. Try to redirect your loved one from the hallucination to a soothing activity.
  5. Limit environmental activity and noise.
  6. Use a calm quiet approach and create a quiet environment.
  7. Keep areas well lit so things in the room are not misidentified.
  8. Cover glass tables, mirrors and other pieces of furniture that have a high gloss and may create visual disturbances.
  9. Avoid the flickering, changing light of a TV which might prompt hallucinations.
  10. Turn off a television, radio, or computer if you think that is causing the hallucination – your loved one may not be able to tell the difference between entertainment and reality.

Language

The language problems experienced by people with dementia are likely to worsen with fatigue, illness or stress. But try to clarify the particular language problems your loved one has.

  1. If you are talking with someone who has semantic dementia, try to use common words and short sentences.
  2. Avoid using “baby-talk” or talking down to them - just be clear.
  3. Use positive statements like “I ran” instead of “I didn’t walk.”
  4. Be sure to speak slowly.
  5. If the person has progressive non-fluent aphasia, give them time to express themselves or try to explore alternate means of expression through writing, art or movement.
  6. Reduce environmental distractions like televisions, radios, crowds, etc.
  7. Gain and maintain eye contact so that facial expressions can help.

Memory Difficulties

  1. Encourage the patient to make lists
  2. Use calendars, alarms or other reminders to help jog memories
  3. Invite your loved to tell you stories about their past or what they do remember
  4. Encourage them to engage in complex activities that they enjoy and are challenged by such as gardening, playing bridge, dancing to music, playing piano

Sexual Disinhibition

People with dementia may at times be sexually disinhibited due to a lack of insight, lack of impulse control and an inability to “read” others’ responses.

Tips for managing sexual disinhibition:

  1. State firmly what behavior is not acceptable.
  2. Avoid situations which appear to “trigger” the behavior.
  3. Tell your family and friends that this is caused by the disease and is not how the person wants to behave.
  4. Print “business” cards which explain that the person has an illness and to excuse the behavior. These can be useful for public places, e.g. at the check out in the supermarket (click here to download cards you can print).

Spatial Navigation/Wandering

Wandering is a common problem among seniors with Alzheimer’s.

Tips for managing spatial navigation problems:

  1. Consider enrolling in MedicAlert® + Alzheimer’s Association Safe Return®, a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency.
  2. Try to minimize change in the arrangement of furniture and objects in the person’s living space.
  3. Hang curtains over doorways or paint them to look like windows or bookshelves.
  4. Install locks in odd places on entry doors and windows. For example, the person with dementia might not be able to operate a deadbolt placed at the bottom of a door.
Citation

http://memory.ucsf.edu/caregiving/alleviating-symptoms

© 2015 The Regents of the University of California

 

When Someone With Dementia Says, “I Want to Go Home”

(Caring.com) One of the hardest things to hear someone with Alzheimer’s or another dementia say is,

“I want to go home.”

I used to dread the moment near the end of a visit with my Gram (who had Alzheimer’s) when she’d perk up from a semi-stupor in which she no longer recognized me: “Where’s my purse? Have we paid yet? Let’s go home.” Briefly, she sounded almost like her jolly old self.

No matter how long I was there, or what we did, it ended like a perpetual restaurant outing. Except of course that she lived at this “restaurant.”

I’ve since learned that “I want to go home” isn’t usually meant literally by someone with moderate or late-stage Alzheimer’s, nor should it be taken that way. Some things I’ve learned:

  • Don’t argue, “But you are home!” For one thing, the “home” being spoken of may not be the same place you’re thinking of. When my father refers to “going home pretty soon,” for example, we’ve learned that he doesn’t mean the house where he lives now or the town where he lived for 40+ years. He’s referring to far-away Upper Michigan, his birthplace, where he hasn’t lived since college. His long-term memory and emotions have conspired to have made that place the representation of a feeling of deep security.

Arguing with someone with dementia, as you already know, is counterproductive.

  • Hear “home” as a feeling you need to read. When people with mid- or late-stage dementia who live in a facility or are hospitalized say, “I want to go home,” what they’re really saying is, “I’m uneasy,” or “I’m scared.” To all of us, the very concept of home is a mood that’s soothing, familiar, and safe. Doesn’t matter whether the “home” in the person’s head is a childhood home, the home where they raised their family, or the place they live now – or all of them co-mingled as a just particular, satisfying kind of feeling, rather than a place.
  • Don’t be overly distressed. Hearing “I want to go home” can provoke lots of emotions in family members: Worry that “she hates it here.” Guilt at having placed her there. But remember that by mid-stage Alzheimer’s, the person is not very capable of manipulating you, if for no other reason than within a short time she will have forgotten what she said (unless you provoke and prolong by arguing over the geography of home).
  • Go along to get along. I always think of this adage coined by the wonderful consultant Joanne Koenig-Coste, who’s now working with us at [Caring.com] (http://www.caring.com/) : “A fib-let is better than a tablet.” Too often, the person is told, “This is your home now,” and their underlying emotional need goes unaddressed. The person grows more distressed — and then is often medicated to calm down.

Better: Give a hug. Meet that emotional need (fear, uncertainty). Be positive, not negative:

“The weather’s too bad to go out now, maybe later.”

Or, “Why don’t we listen to some music first?” Shift the attention to a happier ending.

With my Gram, we finally learned to get her engaged in dinner or we’d ask one of the aides who took a special shine to her to distract her. We learned not to make a big deal of seeming to leave “the restaurant” without her.

I try to keep in mind the more-true-than-I-knew adage, Home is where the heart is.

Does knowing this make hearing “I want to go home” any easier? I hope so.

Citation

http://www.caring.com/blogs/caring-currents/i-want-to-go-home

By Paula Spencer Scott, Caring.com senior editor

© Copyright 2008-2015 Caring, Inc. All Rights Reserved.

 

Alzheimer’s Disease and Potential Causes of Behavioral Symptoms

(Alzheimer’s Foundation of America) While the underlying cause of the behavioral symptoms of Alzheimer’s disease and related dementias is the illness itself—changes in the brain due to the death of brain cells, there are multiple other factors that may trigger the various behaviors and emotions that can unfold during the progression of the disease. Understanding the cause and effect can help family and professional caregivers better manage situations that may arise.

Reaction to Loss

We all rely on input from our environment to guide us in activities and relationships. An individual with dementia has lost both the benefit of such input and the ability to inform us of their internal world. This absence causes fear, insecurity and frustration, which may present in the form of aggression and agitated behavior.

Some Suggestions:

  • Provide reassurance.
  • Speak in a calm voice.
  • Promote a sense of security and comfort.

Inability to Meet Basic Needs

As a result of cognitive impairment and psychiatric symptoms, a person’s basic needs might not be met. The resulting hunger, dehydration, elimination problems and fatigue can produce behavioral changes. Individuals with dementia may stay hungry because of, for example, their inability to feed themselves, depression or loss of muscle coordination. They may show their discomfort through agitated and aggressive behavior.

Likewise, they may forget how to pour water into a cup or never ask for a drink due to their inability to communicate. Dehydration can lead to urinary tract infection, constipation and fever—putting individuals at a high risk for delirium and consequently more behavioral problems.

Similarly, individuals may forget where or what the bathroom is, and eventually may not recognize the internal cues for urination or a bowel movement. Elimination problems may prompt agitation, aggression, wandering, pacing, and incontinence. Compounding this, they may develop urinary tract infections or constipation which, left untreated, could result in delirium.

Lastly, people with dementia may get tired easily because of wandering, pacing and disruption of the sleep-wake cycle. Fatigue often leads to irritability and aggression.

Some Suggestions:

  • Offer verbal and physical assistance during meals.
  • Serve foods that the individual likes.
  • Provide adequate snacks and supplements.
  • Prevent distraction during meals by rearranging the environment
  • Serve pre-cut or finger food if using utensils becomes difficult.
  • Consult with a healthcare professional about swallowing problems.
  • Schedule fluid intake to ensure six to eight glasses of liquid per day.
  • Avoid coffee, tea beverages with caffeine that act as diuretics.
  • Establish a routine for using the toilet, such as assisting them to the bathroom every two hours.
  • A commode, obtained at any medical supply store, can be left in the bedroom at night for easy access.
  • Put up signs (with illustrations) to indicate the bathroom door.
  • Use easy-to-remove clothing, such as those with elastic waistbands.
  • Try soothing music or a massage to induce sleep.
  • Reduce environmental stimuli.
  • Encourage short periods of napping to prevent exhaustion.

Co-Existing Medical Problems

Pain and discomfort from a medical problem (i.e., dental pain, urinary tract infection) or medication side effects can go unnoticed because of the individual’s inability to report it due to poor memory and/or loss of verbal skills. In addition, caregivers may have difficulty gauging the individual’s pain because the person does not respond to questions. As a result, these individuals may not receive necessary medication or treatment. Those who are in pain and discomfort tend to exhibit verbal and physical aggression, restlessness, wandering and pacing.

Some Suggestions:

  • Become familiar with the person’s medical history.
  • Assess their non-verbal behavior to help identify the cause of distress.
  • Watch for signs of urinary tract infection and other medical conditions.
  • Monitor medications for side effects.

Co-Existing Psychiatric Disorders

Individuals with a previous diagnosis of psychiatric disorders, such as schizophrenia, depression or mania, and those with mental retardation are likely to exhibit more behavioral problems when they develop dementia than other individuals without psychiatric illnesses. Those with hallucinations or delusions and who are depressed or manic tend to exhibit more aggressive and agitated behavior.

Some Suggestions:

  • Consult with your physician about available medications, such as anti-depressants, anti-psychotics and other mood stabilizers, to control severe symptoms, if appropriate. Also discuss non-drug interventions, like behavioral modifications and environmental changes.
  • Provide reassurance.
  • Distract and redirect with other activities.

Environmental Factors

Excessive noise, poor or glaring lighting and cold temperature in the home or a long-term care facility, and overcrowding in a group setting can increase agitation, screaming and aggressive behavior. Any change in the environment or routines, such as bathing and eating, can cause frustration and agitation. As well, boredom that results from lack of activities, and conflicts among residents in a group setting can manifest in behavioral changes.

Some Suggestions:

  • Reduce excess stimuli, such as the TV or radio.
  • Elevate the room temperature.
  • Ensure adequate lighting.
  • Carefully and gradually introduce changes in routine or the environment.
  • Provide activities that are simple and creative.
  • In a group setting, staff should anticipate the characteristics of each resident and adjust the environment accordingly.

Sensory Impairment

Individuals with hearing or visual impairments tend to be more paranoid, hallucinate more, and feel more frightened and frustrated. For example, those with poor eyesight may not eat their food or they may be at risk for falls.

Some Suggestions:

  • Assess vision and hearing.
  • Ensure that individuals who wear glasses or hearing aids have them in place.
  • Evaluate problems such as cataracts, glaucoma or other eye diseases, and correct them with surgery, if feasible, or by creative environmental changes.

Factors Related to the Caregiver

A caregiver’s attitude and knowledge of dementia affect the care of individuals with the disease. Individuals usually respond to a caregiver’s mood and cues accordingly.

Some Suggestions:

  • Become educated about the disease.
  • Stick to routines.
  • Learn effective communication techniques and how to cope with specific behavioral challenges.
  • Use a calm tone of voice combined with gentle touch to convey reassurance.
  • Validate the person’s feelings.
  • Speak slowly and simply.
  • Distract and redirect to positive activities.
  • Be patient and kind.
  • Remember that behavior problems result from the disease. Do not take things that the person says and does personally; it is the disease speaking.
  • Recall fond memories from the past, including ways in which your loved one cared for and supported you in the past. This will increase your ability to be patient and understanding in difficult situations.
  • Reach out to friends and family for support, educate them about Alzheimer’s disease, and consider sharing with them the specific symptoms that your loved one is experiencing. This way, they will be better able to both support you and interact positively with your loved one.
  • Acknowledge your own feelings, possibly sadness, anger or frustration, and consider joining a caregiver support group or attending individual counseling.
  • Remember to practice good self-care—physically and mentally. Try to eat nutritious meals, get a good night’s sleep, exercise regularly, and make time for your own interests and friendships. The better you take care of yourself, the better you can care for your loved one.

Connect with other family caregivers:

For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers. Click here or call 866.AFA.8484. Real People. Real Care.

Citation

http://www.alzfdn.org/EducationandCare/causes.html

©2015 Alzheimer’s Foundation of America. All rights reserved.

 

Alzheimer’s Quick Tips: Repetitive Questioning

(Alzheimer Europe)

He used to ask me the same thing over and over again and it used to drive me round the bend sometimes. It was usually about when the bus for the day centre was coming, what time was dinner, things like that. So now I try to remind him about things as I talk and I put up reminders on the fridge door. He still asks, but not as often. I can either answer or just point to the fridge. It helps me to keep my patience longer.

When somebody keeps asking you the same question over and over again, you may be inclined to think that they are deliberately trying to annoy you. However, this is unlikely to be the case with someone with dementia. They might simply have forgotten having asked a question or that the question has been answered. The question might represent some worry that they have and need to be reassured about. Such repetitive questioning can be extremely tiring and irritating for you, and frustrating for the person who is permanently waiting for an answer and may feel anxious or insecure.

How to Cope with Repetitive Questioning

Write down the answer and draw the person’s attention to it when asked

You could see if answering the question helps. But rather than constantly repeating the same answer, it may help to write down the answer and show it to the person with dementia. But don’t forget that the person’s ability to read is likely to deteriorate over time and that eventually they may be unable to read notes. Also, although it might make you feel better, repetitive questioning is often the sign of anxiety or insecurity and writing down the answer will probably not provide the reassurance needed.

Provide reassurance as well as an answer to the question

The person with dementia might repeatedly ask you what time it is. The reason for this may be that they are worried about being late for an appointment. Knowing the time is not as important as the need to be reassured that they will not be late. Consequently, it may be more effective to keep reassuring the person that you will ensure they are not late than to constantly remind them of the time.

Ignore the question and get a break

If none of the above suggestions work, you may find that the only solution is to simply ignore the question. The person might eventually realise that he or she will not get an answer and stop asking the question. However, although this response might work with some people, it might anger others. For your own peace of mind, if all else fails, perhaps the best thing for you to do is to leave the room, if only for a few minutes.

Citation

http://www.alzheimer-europe.org/Living-with-dementia/Caring-for-someone-with-dementia/Changes-in-behaviour/Repetitive-questioning#fragment-1

Copyright © 2013 Alzheimer Europe