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Winter 2025
Winter 2025 Issue Agitation in Alzheimer’s Disease While common, agitation is not always discussed with individuals with Alzheimer’s disease and their caregivers, to the detriment of both. Memory loss is the primary and most commonly discussed symptom of Alzheimer’s disease. It is often the first identified sign of the disease, leading individuals and their family members to seek medical consultation, diagnosis, management, and treatment. But it is far from the only symptom. Alzheimer’s impacts a person cognitively, physically, and though seemingly discussed less often, behaviorally. In fact, “At least 90% of patients with dementia experience behavioral or neuropsychiatric symptoms including agitation, psychotic symptoms, apathy, depression, and sleep disturbances,” 1 according to a study published in the Journal of Alzheimer’s Disease in 2021. One of the most common behavioral symptoms is agitation. Though the statistics vary, it is estimated that up to 80% of individuals with Alzheimer’s experience agitation.2 “It’s extremely common,” says Laura N. Gitlin, PhD, dean emerita and distinguished university professor at the College of Nursing and Health Professions at Drexel University in Philadelphia. “We refer to it as a dementia-related behavioral symptom. “The highest prevalence is in the moderate stage [of Alzheimer’s disease], but even early on, people can show signs of agitation.” Unaddressed, agitation can have a negative impact on the health and well-being of individuals with Alzheimer’s disease as well as their caregivers. Therefore, health care providers must be prepared to identify, treat, and manage agitation. Defining Agitation Carolyn K. Clevenger, DNP, a professor and integrated memory care clinic director at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, explains that for a long time, agitation was being used to describe almost any behavioral symptom. “You were taking calls from nursing homes and different communities, [and] you’re trying to get at is this anxiety, are they actually having psychosis, is it physical aggression?” Clevenger explains that, only recently, a more formal definition was developed for agitation that includes excess motor activity, verbal aggression, and physical aggression. Still, agitation can include a number of behaviors. Gitlin lists “pacing, hoarding, being restless, rejecting needed help” as possible manifestations of agitation. “It is associated with other behaviors, as well. It can be associated with anxiety. If someone is very anxious, they then may become agitated. [Agitation] may show up as shadowing a caregiver or other family members. They may dismiss people’s attempts to engage with them,” she describes. Why and when agitation occurs varies with the individual. As mentioned, agitation appears most often in the middle stage of Alzheimer’s. At this point, an individual with Alzheimer’s disease is typically experiencing more pronounced symptoms and may need more assistance or a higher level of care. It is a stage in the disease that can last for years. “We are learning more about the pathology of agitation, what exactly is happening biologically that’s causing this,” Clevenger says. “[In this stage], you have enough loss of brain cells in important areas—areas that inhibit some of the more emotional responses. You have a degeneration in those areas. You seem to have more activation of the brain that’s very emotional. Things that maybe you were able to let go of now really make you fly off the handle. Your abilities diminish [in the moderate stage of Alzheimer’s disease]. You are able to do less without support.” Laura Medders, LCSW, program director of the integrated memory care team at the Nell Hodgson Woodruff School of Nursing, agrees. “It’s a lower stress threshold. The amount of time you have before someone flies off the handle is a lot shorter. It’s got to be so frustrating to know that something should not be this way but not be able to figure out how to fix it.” However, the stage of the disease is only one factor that may impact agitation. “There are many contributors to agitation in Alzheimer’s disease,” says George T. Grossberg, MD, inaugural Henry & Amelia Nasrallah Endowed Professor and director of the division of geriatric psychiatry in the department of psychiatry and behavioral neuroscience at the St Louis University School of Medicine in Missouri. In addition to disease progression, he notes that “environmental factors vary but can trigger agitation. Underlying comorbid medical problems such as pain or infection can trigger agitation. The presence of comorbidities varies among Alzheimer’s patients. Psychological factors such as stress or depression vary among patients, and some can deal with anxiety, stress, and mood changes better. Lastly, the biochemical and neuroanatomic changes that underlie some agitated behaviors vary from person to person. All of these factors can contribute to agitation in Alzheimer’s and vary from person to person,” he stresses. Grossberg adds that triggers such as urinary tract infections, medications, and mistreatment or inhospitable environments, as well as a lack of diversionary activities, can also contribute to or lead to agitation. Diagnosing Agitation “Generally, it is the caregiver who brings up the agitation,” says Rachel Marx, MSW, LSW, a social worker and psychotherapist at the Penn Memory Center in Philadelphia. “In my opinion, this is because of the disease. One of the effects of Alzheimer’s on the brain is that you progressively lose awareness of your own symptoms. So, while a person with Alzheimer’s may experience a lot of agitation throughout the day, they may not be able to recall these moments when asked about it the next day. This awareness certainly varies, and people in the early stages of dementia may be able to articulate their experience of agitation. However, it is more common that the caregiver is the one seeing it day in and day out and trying to seek help for it.” She adds, however, that caregivers may also not be the most accurate reporters. In some instances, they may be describing typical emotional reactions but assuming it is agitation because of the dementia diagnosis. Individuals with dementia can still experience anger and sadness over the death of a loved one, for example, as well as frustration over an inconvenience that would annoy anyone, such as a room being too loud or traffic delays. Not all emotions are agitation. Conversely, caregivers may not know that agitation is a symptom of Alzheimer’s that should be addressed and chalk up the signs of agitation as par for the course. “Caregivers are often reluctant to talk of agitation or their loved one being more angry, irritable, hostile, having a shorter fuse, or being temperamental,” Grossberg says. Thus, it is important that an individual’s health care team is discussing from the moment of diagnosis behavioral changes that may occur as a result of Alzheimer’s disease. Unfortunately, that does not always happen, Gitlin says. “When I give presentations to health providers, I ask them, ‘How many of you are assessing for behavioral symptoms?’ I used to get no hands with hundreds of people in the audience. Now I get half a dozen. When I ask, ‘Are you using a standardized approach?’ The hands drop. ‘Do you have a systematic way of addressing the behaviors?’ The hands drop,” she says. The reasons why behavioral symptoms aren’t being addressed readily will likely vary from provider to provider but may include a lack of knowledge, time, and resources. However, that doesn’t mean these symptoms should not be brought up with every patient and their caregivers. Fortunately, steps are being taken to increase and standardize conversations about agitation. For example, Clevenger was a part of the team that developed the “Agitation in Alzheimer’s Screener for Caregivers.”3 “It’s brief. It’s eight questions. The fact that we’re asking these questions primes the pump for the caregivers. It cues them that these things may happen. The second thing it does is when someone does have a positive result, it kickstarts the conversation with the care team,” Clevenger says. Treating Agitation To best address agitation, the health care team must first try to determine the cause or the trigger for it. Gitlin describes the DICE approach: • Describe the behavior, such as when and where the agitation occurs and what the environment looks like. • Investigate underlying causes of the behavior (factors related to the person, such as if they are in pain, do they have an underlying medical condition, are they hungry, do they get sufficient sleep). • Create an action plan (modify factors identified that may be contributing to the agitation). • Evaluate to determine if the action plan resolved or reduced the agitation.4 This approach allows all involved to take educated steps toward treating the agitation. For example, if it is a medication causing agitation or a comorbid condition such as a urinary tract infection, the treatment will be specific to that cause rather than the environment or another contributing factor. When a behavioral intervention is planned, the goal of treating agitation is to manage, not eliminate it, Marx says, because “the thing that’s causing the agitation—dementia—is always present.” However, Gitlin does note that it is possible to prevent and resolve agitation by addressing contributing factors and unmet needs. What management looks like will, again, depend on the stage of Alzheimer’s and who will be taking the action steps to address it. “When someone is in the early stages of dementia, sometimes I’ll engage with them in a more traditional talk therapy way. We talk about the stressors causing the agitation and work together to build insight into the problem and talk about new ways of looking at the problem,” Marx says. “When people are in the stage of their dementia where they are unable to retain the topics discussed from week to week, I am usually less focused on building insight and more into giving them concrete skills they can focus on,” she continues. Often, however, it is the caregiver who must work to mitigate the agitation. It is important, then, that the caregiver have the tools they need to respond effectively. That involves remaining calm. “There’s a framework for how to look at what’s happening in front of you. It gives people a plan for how to act and a plan for how to respond. There’s a phrase called ‘Don’t just do something, stand there.’ It helps caregivers remember, ‘I need to assess what happened in front of me.’ It teaches caregivers how to walk through that level of troubleshooting as they are approaching their loved ones,” Medders says. Caregivers can take steps ahead of time to minimize agitation. For instance, if a person is agitated about their inability to drive, the caregiver can put the keys out of sight or move the car from the driveway. These seemingly small actions can help prevent an individual from reaching the point of agitation, Medders explains. Planned activities can also help manage or prevent agitation. Gitlin and colleagues developed the Tailored Activity Program to help aid in this methodology. Through this approach, the interests and preserved abilities of the individual with Alzheimer’s or another form of dementia are identified. Activities are then developed that reflect the interests and abilities of that individual, and caregivers learn how to use the activities in daily care.5 Pharmacological Approaches When it is determined that a pharmacological approach is needed, medical providers must consider all the information available to them about the individual, as well as the medication. Grossberg notes that “Risks of non-FDA approved medications, which are often used to treat agitation, [may have] serious side effects, such as potential falls, increased cognitive impairment, and even Parkinsonian symptoms. In addition, the database for efficacy with off-label treatments such as antipsychotics and anticonvulsants and benzodiazepines is lacking.” Recent studies have shown that other types of medication may be beneficial. For example, a 2024 study from Johns Hopkins University School of Medicine and Tufts University School of Medicine found that an FDA-approved synthetic version of THC reduced agitation by an average of 30%.6 Additional Support “Caregiving takes a huge emotional toll on people,” Marx says. “Caregivers often experience a lot of anger and ‘irrational’ thinking themselves. This can often feel like a moral failing for the caregiver. “So, I believe the first step of supporting the caregiver is helping them understand their anger and accept it as a natural response to grief. Once the caregiver feels more validated in their own pain, it is often easier for them to try to make changes to their behavior in the moment,” she continues. When caregivers have the resources, tools, and support that they need, the individuals with Alzheimer’s are more likely to, as well, creating an environment where, even as the disease progresses, all the symptoms from memory loss to agitation and more can be addressed appropriately by those at home and the medical team. — Sue Coyle, MSW, is a freelance writer in the Philadelphia suburbs.
References 2. Grossberg G, Sanford A, Scanland S, Tracy K, Stefanacci RG. Agitation in Alzheimer’s disease: a decision tree for healthcare providers. Innovation in Aging. 2022;6(1):528. 3. Kales HK, Gitlin LN, Lyketsos CG. The DICE Approach: Guiding the Caregiver in Managing the Behavioral Symptoms of Dementia. Michigan Publishing; 2019. 4. Clevenger C, Brubaker M, Patel M, et al. One minute to recognition: the agitation in Alzheimer’s screener for caregivers (AASC™). Innov Aging. 2023;7(Suppl 1):1092. 5. Gitlin LN, Marx K, Piersol CV, et al. Effects of the tailored activity program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial. BMC Geriatr. 2021;21(1):581. 6. Johns Hopkins Medicine. Clinical trial shows synthetic cannabis reduces agitation in Alzheimer’s disease. Newswise website. https://www.newswise.com/articles/clinical-trial-shows-synthetic-cannabis-reduces-agitation-in-alzheimer-s-disease/?sc=mwhr&xy=10022705. Published October 2, 2024. |
