Behavior is how we act, move, and react to our environment. Behaviors my change as dementia progresses. Some behaviors are related to changes in the brain, some to personality, some to physiological symptoms, and some to unmet needs. 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 time. Behaviors can change gradually or suddenly, depending on the type of dementia, environmental factors, caregiver competence, medical issues, and the overall quality of care.
Symptoms and Behaviors in Mild Dementia
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, behaviors can begin 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.
Symptoms and Behaviors in Moderate Dementia
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, often due to unmet needs. 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.
Symptoms and Behaviors in Severe Dementia
My mom is a 96-year-old retired nurse with pretty severe dementia. She still lives at home with 24/7 care. She would hate being in a nursing home and probably wouldn’t survive for long. 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 probably swear, hit, or cry. At home she doesn’t do any of these things very often, 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 are often triggered by boredom, loneliness, depression, cold or heat, loud noises, or pain and should not be shrugged off by caregivers.
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.
Symptoms and Behaviors at End of Life
As people with dementia approach the end of life they may lose all memory—not just memory of recent events. Brain is so severe that they can be easily confused. 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, acute, severe confusion that can be caused by infections, a reaction to medications, surgery, or illness.
Strategies and Techniques for Addressing Challenging Behaviors
When—if ever in the eternal dementia care merry-go-round of staff shortages, budget limitations, regulatory approvals, mandates, or penalties—will we focus on the people we are supposed to be serving without turning first to medications.
Teepa Snow, STOP Treating Behaviors with Restraining Medications
Caring for a person experiencing cognitive and sensory changes due to dementia requires strategies and techniques that have to evolve as a person’s dementia changes. Family caregivers may not understand (or want to understand) that dementia is progressive and strategies and techniques that work with mild dementia may not work as the dementia progresses. Healthcare providers and care workers may fall into the same trap and must learn strategies and techniques that are effective for each person’s level of dementia.
Despite its progressive nature, there are certain foundational strategies and techniques that are useful, no matter the type or stage of dementia. Using a problem-solving approach is extremely useful because it encourages care providers to try to understand the root cause of an unwanted behavior while also considering how their own behaviors and responses might be affecting the person they are caring for. There are some behaviors that are commonly seen in people with dementia, although they are by no means universal or inevitable.
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. When examining the cause of a challenging behavior, consider the following:
- Does the behavior last all day?
- Has the person’s behavior recently changed?
- Has there been success dealing with the behavior in the past?
- Is the person experiencing something that is treatable?
- Does the proposed treatment or intervention affect the person’s functioning?
- Is a treatment done for the convenience of the caregivers?
Agitation and Aggression
Agitation, aggression, and psychosis are labels on behaviors that are often caused by environmental or personnel approaches rather than being due entirely to the person’s brain changes. Instead, these reactions should be viewed as an expressive communication of a possible unmet need.
Teepa Snow, STOP Treating Behaviors with Restraining Medications
Agitation is a non-specific, restless behavior that is excessive, inappropriate, and repetitive. It is a general term that encompasses a wide range of behaviors.
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:
- Insulting caregivers.
- Shouting, screaming, and loudly demanding.
- Hitting, punching, kicking, pushing.
- Throwing objects or using objects to hit or lash out.
- Engaging in inappropriate sexual advances or obscene language.
Agitation and aggression are present—at least periodically—in many people with dementia, often occurring during personal care tasks involving close contact. From the perspective of a person with dementia, agitation and aggression can be related to loss of control, discomfort, fear, or a response to a perceived threat or violation of personal space. Pain is also associated with agitated and aggressive behaviors and people experiencing severe pain are more likely to display these behaviors (Ahn & Horgas, 2013).
Behavioral interventions, including searching for modifiable behavioral triggers, remain the preferred management strategy for dealing with agitation and aggression (AGS, 2023). Psychosocial and environmental interventions can reduce or even 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, latest available).
*Craniosacral therapy: a hands-on technique that uses soft touch to release restrictions in the soft tissue surrounding the central nervous system.
The use of antipsychotics should be a last resort and used only in collaboration with shared decision-making with older adults and their care partners. The 2023 updated AGS Beers Criteria® for potentially inappropriate medication use in older adults stresses the need to avoid antipsychotics and other medications for behavioral problems associated with dementia and delirium as their use is frequently associated with harm (AGS, 2023).
Psychosis is a disturbance in the perception or understanding of objective reality. It is surprisingly common in Alzheimer’s disease and can emerge as part of the disease process during the mild cognitive impairment stage or even earlier (Ismail et al., 2022).
Dementia-related psychosis can include delusions, paranoia, and hallucinations. A delusion is a false idea or belief or a misinterpretation of a situation. Although there are different types of delusions, misidentification delusions* and persecutory delusions** are common (Fischer, 2022).
*Misidentification delusion: when someone known to the person living with dementia is replaced by an imposter, or someone’s identity is confused—for example, a person’s son is confused for their husband.
**Persecutory delusion: when the person living with dementia is being wronged by someone, for example, misplacing something is attributed to a theft.
Paranoia is a type of delusion in which a person may believe—without a good reason—that others are lying to them, being unfair, or are “out to get me.” A person may become suspicious, fearful, or jealous of other people. Paranoia can sometimes extend to include caregivers or friends, for example, a paranoid person may feel these people are planning them harm. Sensory deficits can contribute to delusions—particularly hallucinations—because of the distortion of sound or sight.
Hallucinations are sensory events in which a person hears, tastes, smells, sees, or feels something that is not there. They can occur when a person living with dementia experiences a sensory event they believe is real, but exists only in their mind. For example, they may see shadows or images of threatening people or things (Fischer, 2022).
Visual hallucinations sometimes 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.
Acute health issues such as urinary tract infections or environmental factors such as poor lighting or sensory overload can cause delusions and hallucinations. Changes in the brain also contribute to these behaviors, especially changes related to sensory awareness, memory, and decreased ability to communicate or be understood.
The first step in the management of delusions and hallucinations is to rule out delirium or an acute medical cause. Observing a person’s behavior and listening to what they have to say often helps caregivers address the root cause of the delusion or hallucination. If the hallucination elicits a fearful or negative response, address the person’s need to regain comfort.
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 does not work. Do not agree or 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.
Consider also 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 Florida nursing home were attributed to dementia and psychosis by healthcare providers (including nurses and 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!
Throughout their lives, our mom and dad walked at the local parks and around the neighborhood. Our mom continued to walk after our dad died. As she got more unsteady, we got her a walker, then a motorized cart at the store, then a wheelchair, which she could propel with her feet. We encouraged her to wander around the store in her wheelchair while we kept a close eye on her. Near the end, she insisted on walking around the house, into each room, around each bed, and out into the backyard (every day). It was frustrating for us because we had to walk with her, but she was stubborn and so we went along.
Family Caregivers, Cocoa Beach, FL
Wandering and exploring are activities that almost everyone enjoys. But—because a person with dementia might be at risk for falls or injury—providers and caregivers often see wandering as a problem. For a variety of reasons, caregivers may want to control or prevent the behavior. However, preventing a person from safely wandering creates other problems, such as boredom, loss of social interaction, stigma, loss of conditioning, pain and discomfort, and even skin breakdown.
Wandering behaviors vary depending on the person and the type and stage of dementia It 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, latest available).
*Elopement: When a person who is cognitively, physically, mentally, emotionally, or chemically impaired wanders away, walks away, runs away, escapes, or otherwise leaves a 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 psychotropic medications, particularly antipsychotics (Burns et al., 2012, latest available).
People may wander out of habit or because they are convinced something needs to be done. Lifelong habits such as returning home after work, cooking dinner, walking the dog, going for a walk, or searching for something you might have misplaced remain in a person’s longterm memory. The most important goal is to prevent a person from wandering into unsafe areas, other resident’s rooms, or eloping from a home or facility.
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.
- People who have an extroverted personality showing warmth, positive emotion, altruism.
- Those who were 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
Despite the substantial clinical consequences of wandering, there is currently no standardized approach for assessing wandering behaviors. This has made it difficult to study the risk factors associated with wandering, its natural history and progression, and the effectiveness of interventions. Wandering behavior is typically detected by caregiver report, which may be imprecise, as it is based on the caregiver's ability to recognize and report this behavior (Kamil et al., 2021).
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 others.
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.
- Remove poisonous items such as caustic liquids and poisonous plants.
- Label cabinets, doors, and closets (with words or pictures).
- Reduce clutter.
- Observe carefully to learn the person’s hiding places.
Many older adults with dementia have sleep 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 disturbances. Numerous negative consequences are associated with sleep disturbances, including increased 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.
In a multicenter study of persons with mild cognitive impairment or dementia, over 60% reported 1 or more sleep disturbances. The most frequent sleep disorder was sleep-disordered breathing, followed by excessive daytime sleepiness, insomnia, REM sleep behavior disorder, and restless leg syndrome (Pao, 2019).
People with sleep disturbances have a higher risk of all-cause dementia, Alzheimer’s disease, and vascular dementia. Sleep disturbances are associated with worsening neuropsychiatric symptoms in dementia, which in turn are associated with higher medical cost, increased risk of nursing home placement, and reduced quality of life for both caregiver and patient (Pao, 2019).
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).
Medication is a major cause of excessive daytime sleepiness in people over age 55, because sedating medications are commonly used in this population. Important side effects with these medications are worsening cognitive functions and increased fall risk, which in turn can also contribute to worsening excessive daytime sleepiness (Pao, 2019).
When 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 shown to improve sleep include:
- Light therapy
- Exercise and individualized social activities
- Caffeine, nicotine, and alcohol restriction
- Comfortable beds with enough pillows for back and neck support
- Good temperature control in rooms