Coping Mechanisms for Caregivers and Families of People With Dementia

Alzheimer’s Behaviors: How Memory Loss Can Change the Personality You Know and Remember

As a family caregiver of someone with Alzheimer’s disease or dementia, you feel overwhelmed. You feel deep sadness. You feel unprepared to deal with your loved one’s condition because you do not understand the cause or know what you can do about it.

Behavioral problems in people with Alzheimer’s disease are common and serious. They can occur at any stage of the disease. 90% of people with dementia experience some form of behavioral disturbance during the course of their illness. In a recent survey of a nursing home, 100% of the residents had experienced a behavioral disturbance within the past month. Behavioral symptoms are described by caregivers as highly stressful and are a common reason cited for institutionalization.

Understand How and Why Behaviors Become Challenging

There are several terms for these behaviors: non-cognitive and behavioral symptoms. Doctors call these the “behavioral and psychological symptoms of dementia.” But don’t
worry about the medical terms—even the professionals do not use the medical terms
very consistently. These are symptoms that include things like agitation, anxiety, elation,
irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or
appetite changes.

Agitation

Agitation is the most commonly used term and it encompasses a broad range of disruptive behaviors. In its mild forms the person can be snappy and short-tempered in ways that are out of character for him or her. The person may display restlessness such as pacing, packing and unpacking, aggression and insomnia. More severe agitation includes physical and verbal aggression such as yelling, cursing, pushing, hitting and biting. Delusions and hallucinations are other behavioral symptoms that can be very distressing to both person with AD and his or her family.

Delusions

Delusions are false beliefs that the person with AD insists upon despite a lack of evidence or even evidence to the contrary. Dr. Alzheimer’s first patient Augusta D., had prominent behavioral symptoms including hallucinations of a child crying and delusions that her husband and Dr. Alzheimer were conspiring against her. The most common symptom of this sort seen in people with Alzheimer’s disease is suspicion and paranoia; usually that someone is stealing from them. The person not being able to find belongings, because he or she misplaced them, often prompts these suspicions.

The delusions can be short-lived, that is, often the person can be distracted from them or simply forgets the concern [“two minutes later, he is as gentle as a lamb, as if nothing had happened.”] At times however, the person can become angry or aggressive in the context of a delusional belief.

Hallucinations

Hallucinations can occur in any of the senses. People with dementia might see or hear people that are not there. Less often, they might smell strong odors such as burning rubber that are elusive to others. These hallucinations are sometimes misperceptions of normal events (for example a patient interpreting a shadow as an intruder in the apartment) or they can be brain “tricks” that create vivid images or sounds that do not conform to actuality.

The behaviors can sometimes be understood as reactions to circumstances that the person can no longer manage: the person with AD may resort to yelling or throwing things when he or she cannot find the right words to express needs. The person with AD is less able to fend for themselves, more dependent upon others, and sometimes frightened of being alone. This can explain why some people with dementia cling to their spouses and follow them everywhere. Other aspects of these behaviors derive more directly from the brain disease: the loss of brain tissue and brain chemicals that causes memory deficits can also impact the person’s ability to control emotions and behavior.

Management

Management of these behaviors must take into account what the person’s needs are and to what extent he or she can express needs. The person might be in need of company, might be bored, or have more basic needs that cannot be expressed directly; an example will be pain related to an undetected medical condition. So, the first step in management is to look for patterns to the behavior. Does it occur only when the person needs a bath? Has the person developed a fear of the shower that precipitates the agitation and can it be controlled by a common sense measure like the use of a sponge bath? The next step is to provide social support, engaging activities, exercise and relief from discomfort. Structured activities such as attending a day program or daily walks can provide both social support and mental engagement. These common sense efforts to enhance the daily quality of life can diminish the frequency of agitated behaviors.

Responding to Feelings

People with Alzheimer’s disease often experience basic human needs to express emotions such as joy, anger, fear and sadness. Feelings of fear, anger, loneliness, embarrassment, worthlessness, and isolation are most common. Many people believe that people retain their emotional link to the world regardless of how close to the end of life a person is.

Responding to the feelings behind behaviors is key to understanding what the behavior may be trying to communicate.

How To Respond To Feelings

• Enter the other person’s reality.
• Look for the feelings behind the words or behaviors.
• Do not be judgmental.
• Respect their needs – treat the person as a valued human being.
• Communicate comfort, warmth, and praise.
• Your emotions will be mirrored – monitor yourself.
• Smile!
• Put the person’s feelings into words.
• Allow for negative feelings – provide comfort, and do not brush them off or disagree,
• Reminisce – allows for use of the memory that is still present.
• Share feelings – it is okay to talk about how you feel.

Preventing Behaviors

Not all behaviors are problems. If behaviors cause difficulties for the person, caregiver or others, the best strategy may be to do nothing. If a particular behavior is a challenge, try to understand it first.

Techniques For Prevention

• Diversion or distraction: Moving or shifting the person’s attention from one stimulus to another.
• Removal: Separating the person from the situation or stimulus.
• Redirection: Moving or shifting energy from one activity to another.
• Task Breakdown: Separating an activity into smaller and simpler steps.
• Stimulus Control: Provide limited choices.
• Environmental Manipulation: Control noise level, lighting, and temperature.
• Reassurance: Provide a sense of safety and security.
• Setting Limits: Take control of the situation and not allow certain actions or activities to happen.

Responding To Behaviors

Here are some common behaviors and the typical meanings.

Anxiety/agitation

• General unrest, uneasiness, or apprehension. These may include hostile actions, such as shouting, screaming, and object throwing.

Problematic wandering

• Leaving an area that creates discomfort, expending excess energy, discomfort, exhibiting lifelong patterns of work or time schedule.
• This can be a minor irritation to a safety concern. Sometimes wandering can be caused by a delusion, such as the person searching for a loved one. Whatever the cause, wandering often requires careful and creative management to prevent injury.

Aggressive reactions

• Usually directed at the caregiver or another individual. Hitting, pushing, or threats are most common and occur when a caregiver attempts to help an individual. Can cause injury to themselves or another person.

Rummaging

• Looking for something meaningful or comforting.

Repetitive Crying Out

• Unresolved pain or discomfort.

Problem Solving Behaviors