March/April 2016

Managing Difficult Behaviors in Dementia
By Linda Conti, RN, CHPN
Today's Geriatric Medicine
Vol. 9 No. 2 P. 16

Ensuring needs are met using reassuring language, changing environments, and engaging in soothing activities are among helpful strategies for addressing undesirable behaviors.

Agitation is the most common reason Americans place loved ones with dementia in nursing homes. There are more than 5 million Americans with dementia,1 and 80% of them may develop behavioral symptoms such as aggression, hallucinations, or delusions at some point.2

As the geriatric population grows, health care practitioners will increasingly encounter distressed caregivers of dementia patients asking for help in handling difficult behaviors. Though most agitation is probably a result of deteriorative changes, health care professionals can influence behaviors.

Why Behaviors Occur
Some experts suggest that all behaviors are forms of communication. So confounding or "bad" behavior may actually be an effort to communicate an unmet need when the disease has robbed a patient of words and logic. Resistance-type behaviors may be a response to loss of control, confusion about what is happening, or even feeling rushed in any particular situation. A patient may be depressed, in pain, or responding to stress. There is supposition that as the nervous system degenerates, it leaves patients with decreased ability to cope with stress.

Detective Work
Caregivers need patience and persistence to sort through patients' behavioral clues. They should begin by ruling out straightforward physical factors such as pain, injury, constipation, infection, wet briefs, tight or uncomfortable clothes, or a patient feeling too hot or too cold.

A patient may provide clues about an underlying problem. In one actual situation, a patient complained bitterly that his foot hurt. In the emergency department, an assessment revealed a severe bladder infection. Following treatment, the patient said his foot no longer hurt. He had provided the biggest clue—that he had pain—and it was up to caregivers and health care professionals to find the source.

Caregivers should review the events of the previous day to evaluate whether a patient is fatigued from lack of sleep or whether there are changes to a patient's routine or environment, including the presence of simple holiday decorations, for example. Change is the enemy of people with dementia.

Triggers
Experts in the field of dementia have identified six situations that commonly spark agitation, including fatigue, change, a perception of loss, level of stimulation, excessive demands, and physical stressors such as pain, infections, or constipation.

Difficult Behaviors

Agitation and Aggression
Agitation, restlessness, and anxiety are common in people with dementia, but even more worrisome is aggression. These behaviors can begin abruptly or build from a patient's frustration. The key to managing them lies in examining the source of behaviors to understand the feelings leading to the actions.

After checking for physical discomforts, examine what happened immediately before the negative behavior. What triggered it? Spending the time to figure this out may help prevent future incidents. Use a soft, soothing tone and reassurance in addressing the patient, such as "You seem upset. I'm sorry you're upset, but I'm right here. Let's get a cookie."

Try a change of environment, something surprising or distracting: dancing, singing a song, going for a walk, or simply going to another room. Involve the patient in an art activity or ask for his or her help with a task. Go for a ride in the car. Play familiar hymns, Christmas carols, or old time music. Keep in mind that reasoning doesn't work.

Wandering
Nearly two-thirds of people with dementia will wander at some point. Be prepared. A patient may wander when looking for someone, "going to work," relieving boredom, or looking for a place to eat. Identifying the reason for wandering may provide clues about managing it. The following strategies may help to eliminate or reduce a dementia patient's tendency to wander:

• Involve the person in activities throughout the day, such as folding towels, drying dishes, or taking out the garbage. This will improve sleep, increase feelings of control, and reduce anxiety.

• Encourage physical activity by taking a walk, dancing, or exercising together.

• Safety-proof the home with deadbolts or locks that require a key. (Never lock a dementia patient in the home alone.) Put child-safe covers on doorknobs to the outside.

• Disguise the door with a curtain or full-length picture of a bookcase. Other possibilities that deter a patient's approach to a door are STOP! or DO NOT ENTER signs.

• A large black mat in front of or just outside a door may appear to the patient as a huge hole that can't be crossed.

• Inform neighbors about wandering tendencies and make sure they have contact phone numbers.

• Have the patient wear an ID bracelet available through MedicAlert or the Alzheimer's Association. Consider a GPS bracelet designed for this purpose.

• Have a recent photo to show if a patient does wander.

Suspicion or Paranoia
This is a phase many people with dementia experience. They may believe someone is trying to steal their money or belongings. This feels very real to dementia patients; explaining and logic won't work. This is a manifestation of the disease, and not the patient's thought; it's not personal.

Let the person speak without correcting him or her. Be reassuring, reminding him or her who you are and that you are there to help, using phrases such as, "Let me help you look for the money," and then redirect attention to a photo album in the room. If money is a recurring issue, put coins and small bills in a purse or wallet for you to "find" in the future. If a person believes people are breaking into the house, reassure him or her with statements such as, "That must feel scary. I'm right here. I'll make sure nothing bad happens." Then refocus attention.

Sundown Syndrome
Sundowning is a term that refers to increased confusion and disorientation in the late afternoon and early evening. As many as 20% of people with dementia experience sundown syndrome.3 This behavior is usually most severe during the middle stages of Alzheimer's disease, decreasing with disease progression.

People with sundown syndrome may experience mood swings, agitation, yelling, lashing out at caregivers, pacing, tremors, and suspicion. They may have difficulty sleeping, wander more, and "want to go home" as shadows appear. They may be aware of their own confusion, which can lead to additional frustration.

Alzheimer's disease appears to disrupt the brain's regulation of cycles of sleep and wakefulness. Other possible causes include mental and physical fatigue; low lighting and increased shadows; discomfort due to pain, urinary tract infection, fecal impaction, etc; medications; hunger; a noisy sleeping environment; a lack of organized evening activities; excessive daytime sleeping; or people coming and going.

Interventions that may help calm a patient include using reassuring language, such as "You'll be all right. You're in a safe place;" not arguing with or correcting him or her; looking for unmet needs such as cold, hungry, wet, or in pain; relocating him or her to a calmer place, such as the bedroom, with fewer people and noises; occupying him or her with a favorite activity at the time sundowning most often occurs, such as enlisting help to make dinner, engaging in an art project, or taking a bath—something the person likes to do; and reminiscing about bedtime activities with their children when they were young parents.

Consider alternative techniques, including aromatherapy, pets, calming white noise (eg, ocean waves, crickets, or a brook), soothing food or warm milk, singing a favorite song or hymn, reading a familiar poem or children's book, gently brushing hair, or giving a hand massage; several of these techniques can be used at the same time.

Sleep Issues
Many people with dementia experience difficulty with their circadian rhythms that dictate sleep and wake states. Some tips to help normalize sleep habits include maintaining consistent sleep and daily routines; limiting daytime sleep to 15- to 20-minute naps; increasing daytime activity, including physical activity such as walking or dancing; avoiding caffeine or serving it only in the morning; offering a light bedtime snack to prevent hunger as a cause of agitation; allowing as much independence as possible in decision making, including a person's most comfortable sleeping spot; considering melatonin to promote sleep; and keeping a night light on and the room uncluttered.

Seek medical advice if these measures don't work. There may be medical conditions contributing to the nighttime confusion and agitation. A physician can also review a patient's medications, eliminating those causing reactions or that are unnecessary.

Bathing
For some dementia patients, bathing prompts agitation. It may feel strange to a person with dementia to have help with an activity he or she has always performed privately. Preparation can help enormously.

Treat pain first. If the patient experiences pain with movement, medicate at least 30 to 60 minutes before the bath. Have at the ready all the supplies you will use. Explain what you are going to do and allay fears. Maintain modesty and ensure the room and water temperature are comfortable.

Make bathing a pleasurable spalike experience. With time, a patient may look forward to bathing. Play favorite music, offer a snack or beverage, use aromatherapy, or spray a favorite perfume or aftershave. Give a shoulder massage. Find pleasing ways to involve all of a patient's senses.

Let the patient do as much as possible for him- or herself. Providing choices restores a sense of control at a time when the person has lost control of so much. Offer choices such as, "Would you like to wash your face or would you like me to help?"

Maintaining regular routines, including a regular bath routine, is the key to maintaining serenity. Rushing or startling a person with dementia may provoke agitation.

Sexual Behaviors
The need for closeness is an important part of humanity. People with dementia continue to need loving, safe relationships and caring touch. Sexuality is one expression of that need.

Some people with dementia may continue wanting sexual contact, while others lose interest. As dementia patients lose their inhibitions, some may display inappropriate sexual behaviors, such undressing or fondling themselves in front of others or making inappropriate sexual advances.

Keep in mind that inappropriate behaviors are part of the illness and not personal. A person with dementia may not know how to properly channel sexual urges or when to appropriately express the desire for physical affection.

Don't act alarmed or shame the person. Walk him or her to a private area. This is a good time to employ distraction techniques, offering a special treat, introducing a favorite object, or arranging time with a pet.

During the day, provide physical contact through other means such as holding hands, brushing a person's hair, or giving a back rub.

Communication
Simple things can greatly enhance communication with a dementia patient. For example, are his or her glasses clean, hearing aids in place, and fresh batteries in the hearing aids? Find a place away from distractions such as TV or radio. If necessary, close the curtains or a door.

Focus on your communication style. Sit down, if possible, to be at the person's eye level; standing over someone can feel threatening. If there is a chance the patient has forgotten who you are, introduce yourself. Use a pleasant voice with a smiling facial expression. Speak slowly, calmly, and clearly—not more loudly. Don't argue or try to reason with the person; logic doesn't work.

Speak in short sentences, pausing after each to allow a person to process what you have said. Give one simple instruction at a time. When a patient with dementia is told, "Put on your shoes and socks, brush your teeth, comb your hair, and come to the kitchen to eat your breakfast," none of those things may happen. Use hand gestures when possible, such as patting the chair in which you want the person to sit. Wait patiently for a reply before repeating yourself.

Delirium
Delirium is characterized by a sudden change in thinking ability as opposed to the drawn-out disease process of dementia. Delirium is treatable and should be promptly addressed. If nondrug treatments fail, antipsychotics can be effective. Delirium is characterized by a sudden change in thinking ability, inability to focus or sustain attention, changed perception of surroundings, disorganized behavior, variable or fluctuating status, and a sudden onset within hours or days.

Delirium triggers include a new or changed environment, such as hospitalization; electrolyte imbalance; fecal impaction; urinary retention; drug interactions or side effects; pain; stress; injury; or a serious medical problem such as a stroke, organ failure, or blood clot.

As with agitation, delirium can often be prevented or reversed with a calm, familiar environment and routines, activity during the day and quiet surroundings at night, glasses and hearing aids that are working and in place, and relaxation, such as music, massage, or reading to the patient.

Other Possible Solutions

Bright Light

Exposing elderly adults with dementia to bright light boosts their mood. Circadian rhythms are very sensitive to light. Research has shown that nursing home residents exposed to bright light for nine hours per day experienced fewer dementia and depression symptoms. It also improved disturbed thinking, mood, behavior, functional abilities, and sleep.

Adding melatonin reduced the time it took to fall asleep and increased the length of sleep in the study. However, when given alone, it made residents more withdrawn during the day. When used with bright light therapy, melatonin reduced aggressive behavior and didn't produce resident withdrawal. This research indicates that melatonin should be used only in conjunction with bright light therapy.

Rummage Bags
People with dementia often feel a sense of loss—of objects, memory, and the ability to communicate. This sense of having lost something can cause anxiety or agitation. A rummage bag is a tool to occupy, distract, and satisfy a patient with dementia with an activity related to what they are feeling. It can also relieve boredom.

Use a large purse, a men's toiletry bag, or any other bag with an assortment of familiar objects that might be interesting to touch, manipulate, or examine. It can be easily filled with common objects in the home. Be sure to avoid items small enough to swallow, sharp objects, or anything that can be disassembled. Be creative. A bag might include items such as keys, address book, wallet, unbreakable mirror, coin purse, small stuffed animal, nonsharp kitchen gadget, sample credit cards, photos, TV remote without batteries, comb, poker chips, old cell phone, sealed flashlight, or a bottle opener.

Distraction Kit
Create a bag or box of interesting, unexpected, and pleasant activities to introduce when you need to redirect a person's attention. Eventually the box may have such pleasant associations that the patient quickly redirects his or her attention to it. It could include items such as aromatherapy or perfume; a sound machine with chirping, rain, waves, and other sounds; picture books; a music box; lotion for a hand or foot massage; a flannel blanket to warm in a dryer and wrap around feet; or special treats.

Redirection
This technique is invaluable for caregivers. Some examples include the following:

Patient: "Get away from me! Don't touch me!"
Response: Move away, change your appearance (eg, change shirt or sweater), try a diversion such as offering food. If someone else is available, let that person approach the patient.

Patient: Repeating same sentence.
Response: Hold hands with the patient; join in saying the words. Then sing to him or her a familiar tune; switch to the original words to the song.

Patient: "I want to get out of here!"
Response: "Where would you like to go?" "How do you get there?" "What is it like there? Who will be there?" Start talking about those people. Gradually direct the conversation to cars he or she had in the past or the geographic area.

Patient: "Where's my suitcase (or pocketbook)? Someone took my suitcase!"
Response: "Let me help you look for it." If this object is a frequent concern, keep a suitcase or pocketbook nearby that you can "find."

Patient: "I want to go to Sacramento."
Response: "Okay. But you need to get dressed and have breakfast first."

Though none of these techniques will work all the time, patience, persistence, and trial and error can reduce agitation in dementia patients, significantly improving quality of life for both patient and caregiver.

— Linda Conti, RN, CHPN, is the director of marketing for Pathways Home Health & Hospice in the San Francisco Bay Area. A certified hospice and palliative care nurse for 22 years, her area of expertise lies in the provision of hospice and home health services in long term and residential care settings.

References
1. Alzheimer's Association. 2015 Alzheimer's disease facts and figures. http://www.alz.org/facts/downloads/facts_figures_2015.pdf. Published 2015.

2. Barnes TR, Banerjee S, Collins N, Treloar A, McIntyre SM, Paton C. Antipsychotics in dementia: prevalence and quality of antipsychotic drug prescribing in UK mental health services. Br J Psychiatry. 2012;201(3):221-226.

3. Sleep issues and sundowning. Alzheimer's Association website. http://www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp