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. Call your local Area Agency on Aging, the local chapter of the Alzheimer’s Association, or Elder at Home 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.

The following is an overview of the most common dementia-associated behaviors with suggestions that may be useful in handling them.


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. 
  • 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, state-ment, 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.

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. 


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.



Top 7 Alzheimer’s Myths Debunked

Currently, approximately 5.1 million in the United States have Alzheimer’s disease, according to the National Institute on Aging.
It’s a disease that progressively robs people of their memories, behavioral abilities and cognitive functions.

 In older people, Alzheimer’s disease is the most common cause of dementia, but unfortunately, there is no cure.

Of course, the medical community is working towards a cure and, as they do, they continue to debunk longstanding myths surrounding this deadly disease.

Here is the truth behind the top 7 myths connected to Alzheimer’s disease.


1. Alzheimer’s Isn’t Fatal

Unfortunately, this myth is not true. According to the Alzheimer’s Association, no one survives Alzheimer’s disease. Aside from significant memory loss, the destruction of brain cells brought on by the disease also causes loss of bodily functions, including a person’s ability to talk, walk, connect with other people, think, and eat.


2. Your Relatives Have it, So Will You

Genes do play a role in our chances of developing the disease, but only a small number of cases – about five to seven per cent – are an inherited form of the disease known as Familial Alzheimer’s disease (often referred to as “early onset”). If you have a parent or sibling who has Alzheimer’s disease, you have a three times greater risk than someone who doesn’t. New research suggests that certain genes (such as the apolipoprotein E gene) can influence the development of the disease but experts note genes themselves don’t cause the disease, and people who don’t have the genes can still develop Alzheimer’s disease while people who do can remain disease-free.


3. Alzheimer’s Disease is Exclusive to Older People

One out of every eight persons who is over the age of 65 has Alzheimer’s disease, but the disease is not exclusive to older people. Though it’s limited to only about 5% of diagnosed cases, people in their 30’s and 40’s can develop early-onset Alzheimer’s.


4. Alzheimer’s Disease is the Same as Dementia

Alzheimer’s disease accounts for between 60% and 80% of all cases of dementia, but it is not the same thing. Dementia is a term that covers an array of diseases and syndromes, including Huntington’s disease, Creutzfeldt-Jakob disease, Parkinson’s disease, and Wernicke-Korsakoff syndrome.


5. Memory Loss is Normal

As people age, it’s normal to occasionally forget something, such as the name of a new neighbor or the title of a movie you recently watched. However, the National Institute on Aging cautions that intermittent forgetfulness is not the same as the serious memory loss associated with Alzheimer’s disease. If memory loss has become an issue, consider the other warning signs associated with Alzheimer’s disease, and address your concerns with your doctor.


6. Alzheimer’s Disease is Caused by Depression

Depression directly impacts about 6.5 million people in the United States who are aged 65 and over. It is a symptom of Alzheimer’s disease, and, in fact, it is very common during the beginning and middle stages of the disease, according to the Alzheimer’s Association. A recent study suggests that late-life depression may be a contributing factor in the development of Alzheimer’s, but depression has not been proven to be a direct cause of the disease.


7. Alzheimer’s Disease Isn’t Preventable 

This simply isn’t true. Experts report more and more evidence showing how lifestyle strategies can help reduce the risk or delay the onset of Alzheimer’s, such as:
  • Eating a healthy diet including fresh fruits and vegetables, fish and nuts. 
  • Challenging your brain with puzzles, hobbies and learning. 
  • Keeping your blood pressure, blood sugar and cholesterol levels in check. 
  • Avoiding brain injuries. 
  • Staying active socially. 
  • Exercising regularly. 
  • Avoiding vices like smoking, drugs and alcohol. 
These strategies are also beneficial for cardiovascular health, which may play a role in the development of Alzheimer’s disease. 


5 Tips for Dealing With Family Conflict


Having a family member with Alzheimer's disease is a stressful situation for everyone involved. According to the Alzheimer's Association, "Dealing with Alzheimer's can bring out many strong emotions. As the disease progresses caregiving issues can often ignite or magnify [existing] family conflicts."

Carole Larkin, a certified dementia consultant, estimates that 30 percent of her clients have conflict between family members. She says you can double that for blended families.

According to Larkin the most common types of conflict are:

1. Disagreement between the spouse and the children on what needs to be done (especially likely when the primary caregiver is male).

2. Disagreement among the children on what needs to be done.

3. Disagreement among children of blended families about what needs to be done and who should pay for it.

Conflict is especially likely in families where people didn't get along previously, when the primary caregiver is not a direct family member (such as in a second marriage), and when some of the family members live out of town and only see the loved one for short, infrequent visits.

The conflict typically affects the primary caregiver more than other family members. It can be endlessly frustrating to have others make caregiving suggestions that are unreasonable because they're based on a lack of knowledge and understanding of the patient's condition and abilities.

For example if a parent living alone is no longer able to do laundry, a child might recommend using a laundry service. What the child might not know, however, is that the parent wouldn't even be capable of opening the door and giving the laundry to the service person when they arrive for the pickup.

Another example is that one of the children might suggest placing the loved one in an assisted living facility. Siblings who haven't been around their parent very often might not be aware that the person couldn't even find the dining room or find their way back to their apartment after the meal and a whole host of other problems.

The Mayo clinic has the following advice for families where there is significant strife: 1) Share responsibility, 2) Meet face-to-face regularly, 3) Ask someone to mediate if needed, 4) Be honest and don't criticize, 5) Join a support group, and/or seek family counseling.

Let's look at each of these in some detail:

1. Share Responsibility
 
Families who do function well often split the caregiving duties among the various family members to avoid placing all the responsibility on the primary caregiver. For example one person may do the actual caregiving while others assume tasks such as handling the finances and legal matters or helping out by doing errands or periodically staying with the loved one so the primary caregiver can have some time alone.


2. Meet Regularly. Meet Face to Face Regularly
 It's important for family members to meet and discuss the situation on a regular basis. (When one or more family members lives out of town, you may try using Skype.) It can also be helpful if the primary caregiver makes detailed lists of the patient's dementia symptoms. These lists should be updated frequently and shared with everyone on a regular basis in order to educate the others about the loved one's condition.


3. Ask Someone to Mediate, if Necessary 
Both Larkin and the Mayo Clinic recommend engaging the services of a mediator when all else fails. It can be helpful to involve a neutral third party. You can also talk to trained personnel at the Alzheimer's Association (24/7) at 1-800-272-3900, or contact Carmen Roy at Elder at Home at 401-475-7705.


4. Be Honest and Don't Criticize
 As is the case when dealing with any type of conflict, all family members should be honest about their feelings and try to avoid criticizing the others.


5. Consider Joining a Support Group or Getting Family Counseling
The Mayo Clinic advises that if the conflict is serious enough try joining a support group or even getting family counseling. It can be helpful to share your difficulties with others in the same situation or, again, engaging the services of a neutral third party.

Remember in order to take care of your loved one, you must take care of yourself.