Behavior is how we act, move, and react to our environment. Behaviors tend to change as dementia progresses. Some behaviors are related to changes in the brain, some to personality, and some to physiological symptoms. Memory loss and changes in the ability to think logically, as well as loss of judgment, certainly affect behavior.
Symptoms and Behavior Change with Each Stage
Symptoms and behaviors are related but different. A symptom is a change in the body or the mind. Loss of memory is a symptom of dementia. Changes in judgment and logical thinking are also symptoms of dementia. Behaviors are actions—for example, biting, screaming, pacing, or hugging.
Depending on the type of dementia and underlying medical issues, symptoms generally worsen gradually—over 10 to 20 years. Behaviors can change gradually or suddenly, depending on the type of dementia, environmental factors, caregiver competence, medical issues, and the overall quality of care.
In the early or mild stage of dementia, particularly Alzheimer’s dementia, forgetfulness and mild emotional changes are the most common symptoms. Although less obvious, logical thinking and judgment are also mildly affected.
At this stage, you will notice a little confusion with complex, multi-step tasks, increased frustration, and a loss of interest in usual activities. People with mild dementia understandably try to hide their confusion from friends, coworkers, and family.
Even when symptoms are mild, behavior begins to change, especially with Alzheimer’s disease. People with mild dementia know something is wrong. They begin to feel stress and anxiety and worry about the future. Depression may become an issue as they struggle with changes in their thinking.
People with mild dementia can occasionally become angry or aggressive. They often have increased difficulty making decisions. They will ask for help more often. They still might be able to work, drive, and live independently, but they will begin to need more help from family or coworkers.
In the moderate stage of dementia, behavioral changes are more obvious to family members and caregivers. Increased forgetfulness and confusion, difficulty with communication, and impaired judgment and logical thinking are common symptoms. Cursing, arguing, yelling, or hitting can develop at this stage. Some people may repeat questions over and over, call out, or continually demand attention. Sleep problems, anxiety, agitation, and suspicion can develop.
Because the part of the brain that controls movement is not damaged, some people with moderate dementia might wander. More direct monitoring is needed than during the early stage of dementia and people at this stage may no longer be safe on their own. Caregiver responsibilities increase, causing stress, anxiety, and worry among family members and caregivers. Surprisingly, many people with dementia may not be diagnosed until they reach this stage.
My mom is a 96-year-old retired nurse with pretty severe dementia. She still lives at home with 24/7 care. She would never survive in a nursing home. Loud noises, too many people around, people who don’t know her needs and habits, boredom, loneliness—all those things would drive her crazy. She likes to walk and I’m sure she’d wander, and maybe swear, hit, or cry. At home she doesn’t do any of these things, but we work pretty hard to keep things quiet, warm, and consistent for her.
Family Caregiver, Miami, Florida
People with severe dementia lose all memory of recent events. They are easily confused and are unable to make decisions. Speech, communication, and judgment are severely affected. They cannot think logically. Sleep disturbances are very common.
All sorts of challenging behaviors occur at this stage. Screaming, swearing, crying, shouting, loud demands for attention, negative remarks to others, and self-talk are common. These types of behaviors can be triggered by boredom, loneliness, depression, cold or heat, loud noises, and pain and should not be shrugged off by caregivers because they are likely related to unmet needs.
Behaviors seen in the moderate stage will likely persist and worsen in the severe stage of dementia—especially if caregivers fail to determine the cause of the unwanted behavior. Wandering, rummaging, and hoarding are common behavioral issues. Some people, particularly those with Lewy body dementia, may become paranoid or experience delusions or hallucinations.
End of Life
As people with dementia approach the end of life they may lose all memory—not just memory of recent events. The damage to their brains is so severe that they are in a constant state of confusion. At this stage, people can develop other illnesses and infections.
At the end of life, a person with dementia may experience agitation, psychosis*, delirium**, restlessness, and depression. Because of hearing and visual deficits, they are startled by loud noises and quick movements. They are often unable to communicate their needs and desires using speech. Communication may be entirely nonverbal: moaning, calling out, hitting, biting, and grabbing.
*Psychosis: loss of contact with reality.
**Delirium: a sudden, severe confusion that can be caused by infections, a reaction to medications, surgery, or illness.
The Problem-Solving Approach
The problem-solving approach encourages caregivers and family members to understand and address challenging behaviors by looking for the root cause of a behavior and treating it—usually with environmental modification, medication management, and caregiver training. The problem-solving approach identifies critical points for intervention based on observing the antecedent, behavior, and consequence (A, B, C) of a challenging behavior.
- Antecedent—what caused the behavior?
- Behavior—what is the behavior?
- Consequence—what are the consequences of the behavior?
The ABC approach is very effective when successful strategies are shared by staff, caregivers, and family members. It helps caregivers understand when and how often a behavior occurs and offers the opportunity for discussion and planning.
The problem-solving approach is also invaluable for examining your own behaviors and responses to dementia. How you react and interact with a person with dementia can have a profound effect on a person’s behavior. Understanding your own biases, frustrations, and triggers will help you approach a person struggling with dementia with patience and compassion.
Strategies and Techniques
As a caregiver, family member, or healthcare provider, how you interact with a person with dementia requires different strategies and techniques depending on the stage of a person’s dementia. Family caregivers, interacting with only one or two people, may still find it difficult to identify when a new strategy or technique is needed. Healthcare providers, because they interact with many different people in varying stages of dementia, must have strategies and techniques that they can call on throughout the day.
Nevertheless, there are certain foundational strategies and techniques that are useful when interacting with someone with dementia, no matter the type or stage. Using a technique such as the problem-solving approach is recommended anytime you encounter an unwanted behavior.
Agitation and Aggression
Agitation is non-specific, restless behaviors that are excessive, inappropriate, and repetitive. Aggression involves physically or verbally threatening behaviors.
Aggressive behaviors can be a threat to the safety of the person with dementia and to those around them. These behaviors are particularly difficult to manage because they are confusing and sometimes unexpected, causing caregivers a great deal of stress.
Agitated and aggressive behaviors can include:
- Verbal insults
- Shouting, screaming, loudly demanding something
- Hitting, punching, kicking, pushing
- Throwing objects or using objects to hit or lash out
- Inappropriate sexual advances or obscene language
Agitation and aggression occur in about 50% to 80% of nursing home residents with dementia. These behaviors can be related to loss of control, discomfort, fear, or be a response to a perceived threat or violation of personal space. Agitation and aggression often occur during personal care tasks involving close contact. Pain is also associated with agitated and aggressive behaviors and nursing home residents with severe pain are more likely to display these behaviors (Ahn & Horgas, 2013).
Psychosocial and environmental interventions can reduce or eliminate agitated or aggressive behaviors. Music therapy, craniosacral therapy*, therapeutic touch, acupressure, and tactile massage have been shown to be successful for treating aggression. In addition, individual behavioral therapy, bright light therapy, Montessori activities, and individualized, person-centered care based on psychosocial management is recommended (Burns et al., 2012).
*Craniosacral therapy: a hands-on technique that uses soft touch to release restrictions in the soft tissue surrounding the central nervous system.
For people with dementia, antipsychotics may reduce aggression and psychosis, particularly among those most severely agitated. However, in older adults, antipsychotics are associated with increased overall mortality, worsening cognitive impairment, hip fracture, diabetes, and stroke (Jordan et al., 2014). It is recommended that antipsychotics be used only as a last resort.
Wandering is a normal human activity that we all enjoy. But, because a person with dementia is at increased risk for falls, wandering into restricted areas of a facility, or getting lost in the community, healthcare providers and caregivers often see it as a problem and disruptive to their care duties. For a variety of reasons, caregivers may want to control or prevent the behavior. However, preventing residents from safely wandering can create a whole other set of problems such as boredom, loss of social interaction, stigma, loss of conditioning, and even skin breakdown.
Although wandering can appear aimless, hyperactive, and excessive, look at it from the standpoint of the person with dementia. People may wander out of habit or because they are convinced something needs to be done, such as going home after work, walking the dog, getting exercise, or searching for something they think they have lost. Wandering may relieve depression, boredom, or pain and discomfort.
Wandering can involve moving to a specific location, lapping or circling along a path, pacing back and forth, or wandering at random. More than half of people with dementia will wander at some point during the course of their disease. Wandering can cause harm if a person with dementia exits the home or facility, elopes*, or becomes lost (Burns et al., 2012).
*Elopement: When a patient or resident who is cognitively, physically, mentally, emotionally, or chemically impaired wanders away, walks away, runs away, escapes, or otherwise leaves a caregiving facility or environment unsupervised, unnoticed, or prior to their scheduled discharge (The National Institute for Elopement Prevention and Resolution).
People with Alzheimer’s disease are more likely to wander randomly than those diagnosed with other types of dementias. People with frontal-temporal dementia tend to pace and lap. Restlessness, with a compelling need for movement or pacing has been linked to side effects of psychotropic medications, particularly antipsychotics (Burns et al., 2012).
Wandering can be beneficial if there are safe places to wander. The most important goal is to prevent a person from wandering into unsafe areas, other resident’s rooms, or eloping from the facility. Wandering can be addressed or even encouraged by providing safe, looping wandering paths with interesting rest areas and providing regular exercise.
A person’s pre-dementia lifestyle may be a factor in whether they are likely to wander. Studies have indicated that people with the following characteristics are more likely than others to wander:
- People with an active interest in music
- Those who have an extroverted personality showing warmth, positive emotion, altruism
- Those who were very involved with social activities and were active in social-seeking behaviors
- People who were physically active
- Those who experienced stressful events throughout their life, necessitating multiple readjustments
- People who respond to stress by engaging in motor activities (Futrell et al., 2014)
Imagine if a person whose pre-dementia lifestyle involved a lot of walking is now living in an unfamiliar environment and is being prevented from moving about. Stopping the natural tendency to explore, to become familiar with a new living space, and to socialize with new people can be extremely frustrating. It is no wonder that this can lead to depression, anger, and behavioral problems.
Did you Know. . .
For people who wander away from their home or care facility, Florida maintains a Silver Alert program for cognitively impaired older adults who become lost while driving or walking. The Silver Alert program broadcasts information to the public so they can assist in the rescue of the endangered person and notify law enforcement with helpful information. For more information, contact the Silver Alert information line, local law enforcement, or the Florida Department of Law Enforcement either online or by phone at 888 356 4774.
Since the Silver Alert program started in Florida in 2008 there have been 2,243 Silver Alerts enacted. The highest number was issued in Palm Beach County (14%). More than three-quarters of the reports were issued for men. A little more than half of the reports were issued for people between 80 and 89 years of age.
Rummaging and Hoarding
Rummaging and hoarding refer to behaviors in which a person gathers, hides, or puts away items in a secretive and guarded manner. These actions are considered a type of obsessive-compulsive behavior. Rummaging and hoarding are not necessarily dangerous or unsafe but they can be frustrating for caregivers and other residents.
Hoarding can arise in those with dementia due to fear of losing money or possessions, due to lack of control, need to “save for a rainy day”, or simply out of confusion. Hoarding is associated with insecurity and anger and may be an attempt to hold onto possessions and memories from the past.
Cognitive changes such as memory loss, poor judgment, and confusion can contribute to the impulse to rummage and hoard. People may rummage out of boredom or to find something they think has been misplaced. They may have a fear of being robbed or feel a need to protect their possessions. Rummaging through familiar items may create a sense of safety and security. Confusion can lead to rummaging through another person’s belongings, which can be particularly frustrating for neighboring residents.
To address rummaging and hoarding behaviors, try to determine what triggers or causes the behavior and look at the consequences, if any. The reason for rummaging and hoarding may not be clear to you but there may be a perfectly good reason why someone with dementia is rummaging.
Rummaging through another person’s belongings can be prevented by installing locks on drawers and closets. The rummaging impulse might be satisfied by creating a rummaging room or a bag or drawer of items that the person can pick through. Restricting all rummaging and hoarding can be frustrating for a person who enjoys these activities.
In a home setting, place important items such as credit cards or keys out of reach or in a locked cabinet. Consider having mail delivered to a post office box and check wastepaper baskets before disposing of trash. Other recommendations:
- Look for patterns
- Get rid of poisonous items such as caustic liquids and poisonous plants
- Label cabinets, doors, and closets (with words or pictures) to help the person find what they are looking for
- Reduce clutter
- Observe carefully to learn the person’s hiding places
- Check garbage for missing items
Psychosis is a disturbance in the perception or appreciation of objective reality (Burns et al., 2012). Symptoms can include delusions, hallucinations, and paranoia. A delusion is a false idea or belief or a misinterpretation of a situation. Hallucinations are sensory events in which a person hears, tastes, smells, sees, or feels something that is not there.
People suffering from paranoia can become suspicious of caregivers or friends; they may feel these people are stealing from them or planning them harm. Sensory deficits can contribute to delusions, and particularly hallucinations, because of the distortion of sound or sight.
Delusions and hallucinations can be caused by health factors such as urinary tract infections or environmental factors such as poor lighting or sensory overload. Changes in the brain can also contribute to these behaviors, especially changes related to sensory awareness, memory, and decreased ability to communicate or be understood.
Visual hallucinations can occur in the moderate to severe stages of dementia and are particularly common in those with Lewy body dementia. While atypical antipsychotics are sometimes used off-label to manage hallucinations, in a person with Lewy body dementia, antipsychotic medications can make hallucinations worse. In a person with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, all medications the person is receiving should be carefully reviewed. This includes prescription and over-the-counter medications, as well as herbal supplements.
Management of delusions and hallucinations involves ruling out delirium as a cause. Observe the behavior and listen to what the person experiencing the paranoia or delusion has to say. Is the feeling pleasant or frightening? If the hallucination elicits a fearful or negative response, address the person’s need to regain comfort. For example, you may ask “What will make you feel safe or comfortable?”
When communicating with someone who is expressing paranoia or delusions, realize that even if their complaint is not true, it is very real for that person. Do not to argue; simply explaining the truth of the situation will not work. Do not agree or further validate the paranoia or delusion—try to respond to the person’s emotion. For hallucinations, it is often helpful to decrease auditory and visual stimuli as well as evaluating for visual or hearing impairment. Behavioral interventions are also useful.
Caregivers must also consider that the claims by the person with dementia may be real. For example, complaints of strangers entering several resident rooms and stealing items in a California nursing home were attributed to dementia and psychosis by healthcare providers (including physicians). When the complaints mounted, the facility installed cameras in the alley next to the facility. Several of the rooms facing the alley had malfunctioning locks on the sliding glass doors leading to the alley. The cameras showed that people were indeed entering rooms at night and rummaging through residents’ drawers and closets. There truly were people entering resident rooms and stealing items!
Many older adults with dementia have sleep and circadian rhythm disturbances due to advanced age, the effects of certain chronic illnesses and medications, declining brain health, diminished mobility, and other causes. The American Geriatrics Society and the National Institute on Aging recognize a geriatric syndrome in which physical and mental risk factors overlap to increase risk for sleep and circadian disturbances. Numerous negative consequences are associated with sleep disturbances, including increases in cognitive decline, metabolic disease, high blood pressure, cardiovascular disease mortality, frailty, impaired quality of life, and hypersensitivity to pain (Capezuti et al., 2018).
Importantly, sleep disturbances can contribute to the onset and severity of some behavioral problems, particularly anxiety, increased confusion, wandering, and sundowning*.
*Sundowning: increased confusion and restlessness in the late afternoon and early evening, possibly due to damage to the part of the brain that regulates sleep patterns.
The symptoms of sleep disruption vary according to the type of dementia:
- Increased sleep latency
- Nocturnal sleep fragmentation
- Increased early-morning awakenings
- Decreased total sleep time and decreased sleep efficiency
- Decreased slow-wave and rapid-eye-movement (rem) sleep
- Nocturnal confusion
- Increased daytime napping and excessive daytime sleepiness
- Agitation, verbally disruptive behaviors, hallucinations, and nighttime wandering (Burns et al., 2012)
Studies have suggested that approximately one-quarter to one-third of those with Alzheimer’s disease have problems with sleep, partly due to the degeneration of neurons in the part of the brain that controls circadian rhythms. Sleep apnea, restless leg syndrome, medical and psychiatric issues, and environmental and behavioral factors often predate the onset of dementia. Chronic pain also interferes with sleep and disturbed sleep reduces the pain threshold (Deschenes & McCurry, 2009).
Sleep disturbances and accompanying symptoms often lead providers to prescribe psychoactive medications, including hypnotics. About half of nursing home residents with dementia are prescribed sedative-hypnotics, especially when displaying anxiety and agitation. However, many of these medications have been associated with an increased risk of falls and fractures in older adults (Capezuti et al., 2018).
Before treating sleep disturbances look for potentially treatable causes, which can include pain, hunger and thirst, the need to urinate, infections, adverse drug reactions, and even noise. Non-pharmacologic treatments include:
- Light therapy
- Good sleep hygiene practices
- Exercise and individualized social activities
- Restriction caffeine, nicotine, and alcohol
- Maintaining a calm, warm atmosphere
- Comfortable beds with enough pillows for back and neck support
- Good temperature control in rooms