This is a paper I wrote as part of my Writing for Psychology class last summer. My interest in the topic was inspired by my grandfather's worsening condition, and my suspicion he had some kind of dementia. (After doing the research, I was fairly certain he had frontotemporal dementia, though, as far as I know, he was never officially diagnosed.) It's not light reading, but maybe it'll be helpful to someone.
Photo by CynthiaCynical
An Overview of Behavioral Changes Common in Dementia Patients
Dementia is an overarching term for several forms of cognitive decline, including Alzheimer’s disease (AD), frontotemporal dementia (FD), semantic dementia, vascular dementia, Huntington’s disease, Creutzfeldt-Jakob disease, and Lewy body dementia. While the specifics of each type differ, they share a progressive worsening of memory and general cognitive abilities, to the extent that patients are eventually completely dependent upon others for normal life functions. There are quite a few possible causes of dementia, some of which are correctable: dehydration, vitamin deficiency, medication side effects, adverse reactions to medications, brain injury, Parkinson’s disease, Pick’s disease, multiple sclerosis, viral infections, normal pressure hydrocephalus, cardiovascular issues/events, and toxin exposure. As of 2013, approximately 8.2 million people in the United States have some form of dementia, and, over age 85, between 25% and 30% will develop it.
Dementia is not something most people encounter in daily life, so the most common exposure to it is through the lens of Hollywood. Entertainment tends to focus on the memory and cognitive function aspects, despite behavioral changes being prevalent, appearing in 90% to 98% of cases. For example, movies such as Still Alice (2014), Rise of the Planet of the Apes (2011), Away From Her (2007), and The Notebook (2004) are all about or heavily feature characters suffering from AD, but the only major features presented are memory and cognitive loss. The behavioral changes, the most common of which are aggression/agitation, vocal disruption, sexual dysfunction, hypersexuality, wandering, and an increasingly diminished ability to both generate and recognize emotions, are far more impactful on quality of life for the patient, their loved ones, and their caregivers. Additionally, the psychological components are more stigmatized than cognitive decline, which is generally accepted as a normal part of aging.
Patients often undergo dramatic personality changes and usually are somewhat aware of the changes, but not of the extent or scale to which it has progressed over the course of the disease. They are, in a very real sense, subsumed by dementia, progressively less able to understand the world around them, follow instructions, communicate their needs or request assistance in a way others will understand, and increasingly vulnerable to environmental stimuli, and so express themselves through “showing out." These changes can be classified as mostly due to cognitive deficits or to emotional deficits.
Cognitive Deficit Behaviors
Aggression & Agitation
Aggression, both verbal and physical, is the most commonly reported behavioral change. There is no solid estimate of the frequency of aggression, due variance in how aggression is defined and measured, with estimates ranging from as little as 20% to as high as 86%. It is more common in late-stage patients. Agitation is defined as a combination of aggression and at least one other unusual behavior, such as wandering or verbal disruption, and is expressed by approximately 73% of dementia-suffering nursing home patients.
One study found approximately 50% of aggressive acts are performed during activities of daily living, such as bathing; another found 45% of patients commit acts of physical and 91% acts of verbal aggression during the same. Approximately 50% of nursing home caregivers have been injured by their wards.
Wandering is defined as disoriented walking, pacing, making laps, escape attempts, or seemingly aimless roaming. It greatly increases risk for the patient. Frequency in dementia patients ranges, depending on exact definition set forth by various studies, from 17% to 63%.
There is some evidence that wandering is not random or pointless, at least from the patient’s viewpoint. Several studies demonstrate wanderers’ routes are begun by impulse, perhaps to fulfill a need or reach a destination, which is subverted by the influence of new environmental or personal stimuli along the way.
There are several possible explanations: functional impairment of the parietal lobe, failures in spatial perception and memory, impairments in visual attention, diminished blood flow in the left temporal parietal region, seeking a place or person of safety/comfort, an attempt to cope with stress, or habituation.
Wandering is dangerous because it drastically increases the likelihood of becoming lost, being involved in an accident, fatigue, or malnutrition, both from the increased caloric requirements and inability to sit still long enough to eat properly. If it becomes too frequent, the likelihood of care facility placement increases, or, if already in care, the use of restraints; both outcomes increase other behavioral problem areas.
Verbal disruption—repeating questions or statements ad nauseam, inappropriately loud vocalizations, incoherent speech, rambling, demands for attention—is mainly of concern for the effect it has on those around patients. These behaviors are generally outward expressions of unsatisfied need or of cognitive failure, resulting in expression that, while perhaps not correct, is achievable. They are most common during patient care, particularly assisted bathroom visits and bathing.
Emotional Deficit Behaviors
Patients demonstrate greatly diminished ability to recognize emotions in others. The ability to interpret other’s emotions is key to interpersonal relations, functioning, and quality of life. Dementia disrupts this ability to an increasingly drastic degree over its course, resulting in patients becoming socially inept, not displaying empathy, and, as a result, becoming socially isolated.
Patients are also significantly inhibited in generating self-conscious emotions such as embarrassment, pride, shame, and guilt. Self-conscious emotions only activate when an individual looks at themselves in the context of others’ points of view (social evaluation), which is difficult, if not impossible, for patients. Self-conscious emotions are vital to preventing unacceptable behaviors (preemptive shame/embarrassment); prompting expected behaviors (such as thanking someone for holding a door); and correcting violations of social norms (apologizing, being self-deprecating, etc.).
While sexual indifference is the most common sexual change that comes with dementia, between 7% to 8% of patients demonstrate hypersexual behavior. It is most commonly expressed through inappropriate comments or propositioning; genital touching; attempting to touch the breasts, buttocks, or genitals of others; inappropriate arousal; risky sexual behaviors; and excessive or public viewing of pornography.
Proper sexual functioning involves sense of self, judgment, and abstraction, as well as regulatory controls relating to emotion and cognition. Reported inappropriate sexual behaviors are often the result of an inability to consider the feelings of a partner, lack of awareness of environmental context, or disinhibition. It is not usually intentional, but rather a result of lack of impulse control, an expression of emotional fulfillment, and/or an inability to understand and comply with social expectations.
Apathy is the most increased behavioral aspect in dementia patients, more commonly reported by the patients themselves, rather than those close to them. (Apathetic attitudes being difficult to perceive in others, especially when there is greatly diminished opportunity for previously enjoyed activities.)
Approximately 43% of dementia patients suffer depression at some point. Untreated, depression will increase other behavioral problems. Those experiencing high levels of stress—understandable, given the circumstances—tend to decrease the frequency of pleasant social and recreational activity, which in turn leads to a heightening of depressive symptoms.
There are currently no FDA-approved medications specifically for treating behavioral symptoms of dementia, but it is common practice to prescribe psychotropic drugs to do so. This brings increased risk of cerebrovascular events, physical injury, greater fatigue/sedation and language impairment, speeding cognitive decline, and an increase in the chances of untimely death. The use of these drugs is frequently outside of, for longer than, and in larger dosage than the recommended application. There has been significant research into the application of non-pharmaceutical methods (psychotherapy, music therapy, aromatherapy, altering environment and caregiver behaviors, among others) as the primary treatment for behavioral symptoms that strongly backs its efficacy.
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