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Trauma-Informed Dementia Care
By J. Scott Janssen, MSW, LCSW

The Alzheimer's and dementia unit staff were at a loss. Troy, a longtime resident with advanced dementia who had always been calm and cooperative, was "sundowning," and nothing they had tried in response had worked. Every day for the past week he'd become agitated and combative whenever staff tried putting him to bed. Most puzzling, Troy frequently raised his fists while threatening staff with profane racial slurs.

"Sundowning" refers to problematic behaviors and psychological symptoms of dementia that often arise in the late afternoon. These include agitation, increased confusion, anxiety, anger, verbal and/or behavioral aggression, and resistance to instruction. In those who are ambulatory, it can also lead to pacing or wandering.

Though the cause or causes of sundowning are unknown, it may stem from factors such as fatigue, reductions in natural light, hormonal disruptions in the sleep/wake cycle, or, for those living in residential facilities, increased noise and activity related to late day shift changes and alterations in staff.

Initial Behavioral Interventions
Those working with Troy had attempted various remedies, including approaching him in a calm manner and using reassurance, distraction, and positive verbal and nonverbal communication. They had tried turning off the television (a source of loud noise and fast-moving images) and replacing it with soft music. During the day they had gotten him out of his room using his wheelchair, keeping him engaged and awake, hoping to reinforce a sense of connection and keep his sleep cycle from becoming disturbed. They kept his routine predictable and added more light in his room. They had even tried a low-sugar diet, but nothing had worked; now they wanted to try a psychotropic medication.

Troy was fortunate to live in a facility committed to using nonpharmacological strategies prior to recommending medications for behavior management. Many residential settings experience pressures that make quick adjustments in medications more attractive than this kind of methodical problem solving and experimentation. Developing thoughtful, individualized care plans for every resident who exhibits sundowning behavior takes time, coordination, and communication across several shifts. When staff turnover and caseloads are high, and when direct care staff are not properly trained in caring for residents with dementia, the temptation to focus on behavioral modification primarily through medication can be great.

Assessing Trauma-Induced Behaviors
The staff working with Troy had been on the right track in attempting to find ways to reduce his agitation using environmental modification, structure, and positive communication, but they had been viewing his symptoms solely in terms of his dementia. There was one dimension they hadn't considered: posttraumatic stress. His aggressive gestures—possibly indicative of a threat response—while using the racial epithet "gook" suggested the possibility that, in addition to dementia, he may have been experiencing underlying symptoms of PTSD related to his having been a combat infantryman in the Korean War (during which "gook" was a commonly used epithet against North Korean and Chinese soldiers).

The interconnection between PTSD and dementia can be nuanced and complex and is often unrecognized by helping staff. Studies have found that people with PTSD have a significantly higher likelihood of developing dementia than those who do not. Though the reason is unclear, some suggest that this may have something to do with stress-related changes in the brain and central nervous system (Qureshi et al., 2010; Yaffe et al., 2010).

At the same time, the onset of dementia has been found to be a risk factor in developing "delayed-onset PTSD," a phrase that refers to the emergence of PTSD in an individual, sometimes years after a traumatic event or events have occurred (Johnston, 2000; Mittal, Torres, Abashidze, & Jimerson, 2001; van Achterberg, Rohrbaugh, & Southwick, 2001;). In older adults, this delayed onset is often thought to be in response to stressors common to aging, loss, and/or health crises. Combat veterans like Troy may be particularly susceptible to late-onset PTSD as they grow older (Davison et al., 2016; Davison et al., 2006; Ruzich, Looi, & Robertson, 2005).

Given that PTSD may be a factor in the development of dementia and that dementia may be a factor in the emergence of delayed-onset PTSD, it is reasonable to conclude that persons with dementia are likely to have a higher incidence of PTSD than the general population. There are other factors as well. Rates of PTSD are higher in the geriatric population as well as among those who are facing the end of life (Feldman, 2017; Ganzel, 2016; Janssen, 2017); medical care and/or relocation to an institutional environment can intensify existing symptoms of posttraumatic stress or cause new ones (Hall & Hall, 2016; Jackson, 2015). Given that people with dementia tend to be older, sicker, and more in need of medical and custodial care, it would stand to reason that professional staff working with this population would be well advised to familiarize themselves with the manifestations and dynamics of PTSD.

Some of the behaviors associated with dementia (e.g., impairment in memory, concentration, and social attunement) and sundowning (e.g., hyperarousal and hyperreactivity, anger, exaggerated startle response, susceptibility to environmental triggers) may also be symptoms of posttraumatic stress. As such, it can be difficult to differentiate what is driving such behaviors. Dementia patients displaying behavioral disturbances may be identified as having disease-related symptoms when they are actually experiencing symptoms of PTSD (Amano & Toichi, 2014; Martinez-Clavera, James, Bowditch, & Kuruvilla, 2017).

Trauma Awareness and Personal Histories
Complicating the picture is the fact that residents with dementia are typically unable to give accurate personal histories, report details about their internal experience, gain insight into trauma triggers, or learn strategies for self-regulation. The result is that it can be difficult to differentiate dementia-related behaviors and psychological states from those that are trauma related. Though interventions for managing sundowning behaviors and for de-escalating the effects of PTSD may overlap, especially as they relate to promoting a sense of safety, connection, and trust, it is important to differentiate (to the extent that it can be done) one from the other or, at least, to recognize that both may be at work simultaneously.

Knowing which behaviors and emotional states may be related to trauma allows a fuller assessment of environmental and situational triggers that could be avoided or modified. This knowledge can also provide clues for strategies that might reassure traumatized residents who are feeling threatened and for de-escalating problematic behaviors. In addition, clinical recommendations for medication management of PTSD and dementia are different. Medications used for one may be contraindicated for the other.

In those whose dementia is less advanced, there may be some limited opportunities for discussing with a patient ways to enhance a sense of safety, optimize resources, teach basic coping skills, and identify aspects of a person's life that are meaningful and may provide comforting distractions when distressed by trauma activation. Though standard psychotherapeutic processing is not possible in persons with dementia, Amano and Toichi (2014) have suggested that eye movement desensitization and reprocessing, a modality developed for working with trauma survivors, can be adapted for use in some patients with dementia, even when the disease is advanced.

Ideally, personal histories gathered on residents entering residential facilities would encompass an assessment for trauma exposure and PTSD. This is not generally the case. Frequently persons with dementia who are exhibiting sundowning behaviors are not assessed for clinical or subclinical PTSD, and nonpharmacological interventions may take a back seat to the convenience and simplicity of relying on behavior modifying medications.

Even professionals who are aware of the prevalence and symptomatology of PTSD may not appreciate its potential impact. Given that dementia is a memory disorder that gradually erases one's memories and capacity for self-reflection, some may assume that memories of trauma will also fade and lose their power to upset.

In fact, the opposite may be true. Traumatic memories can be full of vivid multisensory detail but are often fragmented as well; a combination that may be especially frightening for those whose capacity for rational reflection and self-awareness has been compromised by dementia. Recent neuroscience has found that PTSD actually changes one's brain and nervous system, placing the body and all its senses on constant high alert for perceived threats. This can create intense, instantaneous, fight-flight-freeze responses to stimuli associated with the trauma. These "triggers" are largely unconscious, and the brain responds to them as though the original traumatic event is taking place in the present, not as something connected with the past.

A person who was assaulted years before, for example, may respond to a wrist being grabbed gently by a nursing assistant as though an assault is occurring in the present and have no awareness that the nervous system is being activated by the original trauma. Such intense reactions can be difficult for trauma survivors under the best of circumstances. When the challenges of cognitive and social impairment are added, it warrants reflection as to the ways dementia might actually make such experiences even more frightening.

Trauma-Informed Behavioral Interventions
In Troy's case, his care team met with his son and daughter to gather more information. His children knew little about his war experiences and had no knowledge of his receiving treatment for PTSD, anxiety, or depression. They said he'd been a loner who had "kept things to himself" and been "intensely stoical." They did note that he had spoken on several occasions about suffering from freezing cold and harsh exposure to the elements while in Korea and he'd told his son that he had nearly drowned while his unit was taking heavy fire and retreating across a river.

Troy's sundowning began abruptly. Though there was no obvious precipitating event it was noted that the onset of winter had led to shorter days and colder temperatures, and that the ground outside his window at the time of onset had been covered with snow (something unusual in North Carolina). He'd also had a minor fall when transferring from his bed to wheelchair a couple days before his symptoms began.

Taken together, the meeting generated several ideas for addressing possible posttraumatic stress. The staff decided to use water sparingly when providing personal care. Turning up the thermostat in his room when providing evening care and using warm water rather than cool when applying a washcloth would reduce his exposure to cold.

The social worker noted that falls among elders, even seemingly minor ones, may cause or exacerbate existing symptoms of PTSD. It's possible this may have been a factor in the rapid onset of his problematic behaviors. Given his stoicism, staff wondered if he might have sustained a mild sprain that was causing pain about which he had given no observable indications. He was getting a scheduled over-the-counter pain medication in the morning before receiving personal care and his behavior during this care had not been an issue. It was decided to schedule the same medication at night about a half hour prior to providing evening care. The team agreed that if these interventions failed to reduce or eliminate Troy's distress the next step would be the addition of new medication.

In the next few days Troy's behaviors calmed. Though he continued to become agitated at times, he no longer raised his fists and his use of racial epithets stopped. Within a week, his sundowning behaviors had ceased and he was receiving evening care without incident.

It is hard to know which of these interventions, or which combination, was most determinative. Was it the cold? Was he in pain (a common trauma trigger)? Was it the fact that the snow melted, or was it something else? Whatever it was, the fact that his behaviors came on quickly and abated when staff implemented a trauma-sensitive plan of care suggests that there had been some type of underlying posttraumatic stress at work.

— J. Scott Janssen, MSW, LCSW, is a social worker with the Hospice and Palliative Care Center of Alamance-Caswell in Burlington, NC.


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