Dementia-Behavior Guide

Caring for a loved one with dementia creates many challenges for caregivers. People with dementia-related conditions experience a progressive decline in their cognitive function. This makes it more difficult for them to think, communicate and process information. Dementia can cause mood swings and change a person’s personality and behavior.

These tips will provide practical strategies to cope with the behaviors you may encounter while caring for a person with dementia.

Defining Dementia

Although more common in older adults, dementia is not part of the normal aging process. Dementia is an umbrella term for a group of cognitive disorders, such as:

1. Alzheimer’s Disease
2. Lewy Body Dementia
3. Vascular Dementia
4. Alcohol-related Dementia
5. HIV-related Dementia
6. Pick’s Disease (FTLD – Frontal Temporal Lobe Dementia))
7. CADISIL (Cerebral Autosomal-Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy)
8. CJD (Creutzfeldt-Jakob Disease)

Dementia is characterized by the following:

1. Not being able to think clearly to perform daily activities
2. Motor activity difficulty
3. Memory impairment
4. Difficulty with language and problem-solving
5. Problems with object recognition
6. Personality changes
7. Trouble controlling emotions
8. Problems planning and organizing
9. Seeing things that are not there

We can reduce the risk. Consider doing the following:

1. Look after your heart
2. Be physically active
3. Follow a healthy diet
4. Challenge your brain
5. Enjoy social and mentally stimulating activity

Communicating With a Person Who Has Dementia

Good communication skills will help make caregiving less stressful and may improve the quality of your relationship with your loved one. It will also enhance your ability to handle the difficult behavior you may encounter.

• Prepare for a positive interaction. Attitude, body language and tone of voice communicate your feelings and thoughts stronger than your words. Use pleasant facial expressions, soft tone of voice and physical touch to help convey your message
• Get and keep the person’s attention by eliminating noisy distractions from the television, radio or outdoors. Relocate to a quieter room if needed. Address the person by name, identify yourself and relation and use non-verbal cues and touch to help keep their attention. If the person is seated, meet the person at their eye level whenever possible.
• Communicate clearly. Use simple words and sentences, speaking slowly in a reassuring tone. If you need to repeat yourself, use the same words. Questions needing “yes” and “no” answers are best. Break down activities into one-step tasks to make the task much more manageable. Look for nonverbal cues and body language in response to your direction. Using visual prompts also helps clarify the task or question.
• If you observe frustration or agitation with a task, distract and re-direct your loved one by changing the environment or subject, or reminisce about days of the past. Often, people with dementia may not remember what happened 45 minutes ago but they may clearly remember what happened 45 years earlier. Avoid asking questions that rely on their short-term memory and instead ask general questions about their past, what they previously enjoyed, their favorite breakfast as a child, etc.
• Maintain a sense of humor. It’s important to 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.

Responding to the Behavior

Some of the great challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. It is important to have compassion, creativity and patience.

Remember to not take things personally and to maintain a sense of humor. Consider this:

• We cannot change the person with a progressive brain disorder that may alter behavior and personality. If you try to control or change the behavior, you will likely be met with resistance. Consider accommodating, rather than controlling, the behavior. For example, if the person insists on eating with their hands, serve finger foods. If they insist on sleeping on the floor, put their mattress on the floor to aid their comfort. We can also adjust our own behavior and the physical environment to encourage a loved one to mirror our behavior.
• Report significant changes in behavior to the doctor. Some behavior changes may have underlying medical reasons. Symptoms of pain and medication side effects may be triggering the behavior. Report to the doctor when the behavior began, any changes in medication, treatment or activity function, possible triggers or patterns and ways you are currently coping.
• Get support from others. There are local Area Agency on Aging sites and chapters of the Alzheimer’s Association to contact for support groups and resources. Hearing from others about their techniques to re- direct and manage their loved one’s behaviors can be helpful.

Types of Behaviors You May Encounter

There are several behaviors that your loved one may display. Below are a few examples of common behaviors and ways to cope.

Anger with Disorientation

hould your loved one suddenly become disoriented with their surroundings and begin to express anger, this is likely due to the fear associated with being “lost.” It is important to have visual cues to anchor your loved one to something familiar. Re-direction is key. Try to limit outside distraction, noise and commotion. Your expression and tone of voice will be a cue to your loved one as to how to feel. Avoid arguing. Agree with their statements and agree to change your location or activity.

Wandering

People with dementia often walk aimlessly. They may feel bored, or walking may be part of a past role or job. They may be searching for a bathroom, or fulfilling a need like alleviating pain, feeling thirst/hunger.

Keep the following in mind:

• Encourage exercise to decrease the feelings of restlessness
• Consider the use of curtains in front of exit doors to discourage elopement. Signs that read, “STOP” or “THIS IS NOT AN EXIT” may help as well.
• Changing the type of locks on exit doors may be useful, but make sure doors are accessible and can be opened quickly.
• Put away your loved one’s coat, purse, wallet or any items they wear regularly to go out of the home.
• Place a black mat outside an exit door. This could appear as an impassable hole to the person with dementia.
• Consider the use of ID bracelets or sewing labels into your loved one’s clothing.

Disrobing

• When your loved one begins to disrobe, sometimes their internal clock is set at a different time. They may be tired and need to rest. The issue may be medical. Look for signs and symptoms of pain, urinary tract infection with the need to use the bathroom frequently, as examples. Take their temperature. Report any abnormalities to the physician.
• If there are no medical symptoms present, consider the items your loved one takes off first. Items like belts, buttons, snaps and shoelaces may be a distraction and something to “pick” at. Clothing with buttons in the back may require your assistance, but can decrease their ability to disrobe.
• Offer a task, such as folding socks or small hand towels and have a basket of these items available. The task will keep their hands busy.

Incontinence

Loss of bowel and bladder control may occur as dementia progresses. Establishing a toileting and hydration schedule can help. Placing a commode by the bedside is helpful at night. Use loose fitting and easy to remove clothing with Velcro closure or elastic bands that are washable. Incontinence pads, briefs and washable bed pads are helpful.

Agitation

Agitation is often triggered when a person experiences loss of control or is unable to communicate their needs. Keep in mind:

• Routines and consistency are important. This includes furniture placement and personal items that identify the space as being theirs.
• Encourage independence during tasks, when able to promote feeling of self sufficiency.
• Use touch for reassurance, a gentle tone of voice, physical activity and familiar music help to decrease agitation outbursts. Remove items that create hazards, fall risks or injury, such as throw rugs, exposed cords, cluttered pathways.

Sexually Inappropriate Behavior

Undressing in public, lewd remarks, aggressive sexual demands and masturbation may not have been normal behavior for your loved one prior to the onset of a dementia disease. Decide on a plan of action when the behavior occurs, whether in public or private. Addressing the behavior consistently will ensure that there is an established routine.

Verbal Outbursts

Cursing, arguing and threatening are often signs of stress, anger or pain. Remaining calm is difficult, but doing so will encourage him/her to mimic your behavior and will help de-escalate the outburst. Validating their feelings in a calm, quiet tone will encourage them to soften their tone to listen to you.

Refusing daily tasks, such as bathing, changing clothes, oral care and eating is usually a response to lack of control in the task itself. Feeling rushed, afraid or confused are also contributing factors to the resistance of a task. Explaining procedures before they take place by using cues can help put them at ease. Try setting up their clothing, tooth brush or letting them feel the water run over their hands from the faucet or shower.

During meals, encourage independence whenever possible. Use of an apron or clothing protector will help protect clothing during eating. Offering finger foods to alleviate the use of utensils may relieve some of the frustration

It is important to remember that these behaviors are often coping tactics for a person with a progressive diagnosis affecting brain function.

The behaviors that you may encounter do not generally reflect how the person feels or thinks about you, but rather are an expression of their own feelings of loss. If your loved one is expressing these behaviors and you need additional support, please contact the Family Caregiver Support Network for resources and referrals.