By Scott Janssen, MSW, LCSW
Before moving to a skilled nursing facility, Lannie had been socially engaged and, according to her son, “sharp as a whip,” with a quick sense of humor and a good memory. Shortly after her arrival, she became withdrawn, anxious, and forgetful, and started having periods of confusion during which she could become combative.
After ruling out organic explanations for her confusion, such as a urinary tract infection or a brain tumor, the nursing home staff wondered whether she was showing signs of a memory disorder such as Alzheimer’s disease. Prior to her transfer, Lannie had been living alone. She’d only agreed to move after a fall during which she had sustained an injury that required hospitalization and surgery. It was possible she’d been having cognitive changes at home which she’d covered up. If so, a strange new environment and loss of familiar routines may have exacerbated these changes or made them harder to mask.
On the other hand, the loss of one’s home can be fraught with emotional pain and grief. Such losses can cause depression, anxiety, and even situational disorientation. The staff considered strategies such as psychotropic medication, shaping Lannie’s behavior through positive reinforcement, and moving her closer to the nurse’s station for better oversight. Though her symptoms—withdrawal, anxiety, hyperreactivity, impaired concentration and memory, and combativeness—could be explained by a diagnosis of depression, they were also potential signs of posttraumatic stress disorder (PTSD). Was it possible she was having a posttraumatic stress reaction?
Until recently, posttraumatic stress and PTSD in nursing home residents has often gone unrecognized or misdiagnosed. Now this is changing, in part because the Centers for Medicare & Medicaid Services (CMS) will soon begin requiring skilled nursing facilities that receive federal funding to “ensure that residents who are trauma survivors receive culturally competent, trauma-informed care” with the goal of eliminating or mitigating “triggers that may cause retraumatization of the resident.”
Core features of trauma-informed care, according to SAMHSA News, Spring 2014, include the following:
• learning about the impact and consequences of traumatic experiences;
• examining and using trauma-related screening and assessment tools;
• using collaborative strength-based interventions that highlight trauma survivors’ resilience;
• developing trauma-informed treatment planning strategies;
• reducing the incidence of inadvertent retraumatization among individuals and professional staff who have experienced trauma or are exposed to secondary trauma;
• building a trauma-informed organization by incorporating specific trauma-sensitive strategies across each level of the organization; and
• creating a workforce that’s informed about trauma through in-depth training to increase understanding of trauma’s influence on individuals and among providers. It also should include screening, assessment, and referral processes and other counselor competencies and ethics specific to trauma.
The impact of this regulatory change will be far reaching. As a group, older adults are more likely to have been exposed to potentially traumatizing events than are those who are younger. As adults age, underlying symptoms of posttraumatic stress can worsen, and even in those with no outward signs of PTSD, symptoms can emerge late in life.1-4
The intensification of underlying posttraumatic stress in the elderly is generally attributed to stressors and losses commonly associated with growing old. For example, the death of a spouse, physical illness, loss of meaningful roles, decreased physical or cognitive function, relocation, and invasive medical care can all exacerbate, and even cause, posttraumatic stress. Moreover, thoughts about mortality and impulses to look back on one’s life may uncover painful memories of trauma that trigger feelings of sadness, fear, or vulnerability.
Research by Moye and Rouse suggests that the incidence of PTSD in residents of long term care facilities is higher than that in the general population.5 Kusmaul and Anderson point out that “Institutionalization or ‘nursing home placement’ is a complex and stressful event for older adults and their families, marked by emotional issues, social issues, tangible losses, loss of independence and autonomy, and family conflict and strain.”6
Institutional environments can feel dehumanizing. Rigid routines and norms may be experienced as invasive; loud noises can be frightening or interfere with sleep. Residents may experience a loss of control or feel unsafe. Physical illness, fear of death, isolation, and the need for personal care can present countless trauma reminders that can cause intense reactions. For example, Taylor points out that the “organizational practices of long term care facilities may confront the person with a variety of trauma cues that he or she had managed to avoid throughout much of adulthood. For survivors of childhood sexual abuse, for example, old-age institutions can have many features reminiscent of childhood abusive settings. Residents may have little or no privacy, they may be exposed to naked bodies of other residents, and they have little control over who touches them or how (eg, being handled, toileted, bathed, or checked).”7
When the CMS regulations take effect in November, nursing homes will be expected to have protocols and procedures for identifying patients with psychologically traumatic experiences. They will be expected to raise staff awareness about the prevalence of trauma in residents and the ways institutional care can trigger or cause posttraumatic stress. They will need to tailor interventions and plans of care with an eye toward those with known histories of trauma as well as those who show signs of possible underlying posttraumatic stress.
In Lannie’s case, there were several reds flags suggesting the possibility of trauma. Just prior to her transfer to the nursing home she had fallen, been injured, required emergency care, and spent several days in the hospital. All of these things have been correlated with elevated symptoms of PTSD.
When she arrived, the facility social worker had taken a social history during which it was learned that as a child Lannie and two siblings had been sent to an orphanage after the unexpected death of their mother since, as she put it, “Daddy couldn’t handle 12 children, so the youngest ones who couldn’t work got sent off.” Although speculative, the impact of her mother’s sudden death and being taken to a strange, institutionalized environment may have been traumatizing in ways that paralleled coming to the nursing home and intensified her emotional and psychological pain.
It was hard to know whether Lannie’s memory loss and confusion were signs of PTSD, acute stress, depression, or an underlying disease process such as early dementia (or a combination of these factors). Regardless of the origins, impaired cognition by itself—whatever the cause—can trigger or intensify PTSD or its symptoms.8,9
Given the red flags, the facility social worker met with Lannie’s family to gather additional information about past adverse experiences, possible triggers, and her style of coping so the team could develop a care plan inclusive of the possibility that Lannie was struggling with the effects of posttraumatic stress. Afterward, the social worker made suggestions about ways to modify Lannie’s environment and routines in order to avoid trauma triggers and help her feel safe.
Directly assessing residents for trauma histories can be tricky; some may feel threatened, defensive, or unsafe sharing such information. Questions can bring up emotional pain including intense fear or anger or avoidance reactions. Professional staff need to be prepared to respond effectively if this happens. Special care needs to be taken in terms of trust building, safety, and attuning to residents’ needs and comfort level.
Knowing when and how to make such inquiries and when to respect boundaries and defenses is an acquired skill prized by teams that are trauma informed. When such inquiries appear problematic, much information can be gathered by tracking residents’ behavior, affect, and signs that their nervous system is ramping up into a fight-flight-freeze response.
Due to Lannie’s impaired cognition and the social worker’s sense that sufficient trust had not been established to allow a safe, explicit exploration of past trauma, the facility team was not able to get a clear sense of the extent to which Lannie may have been experiencing posttraumatic stress, but there were enough indications for them to act as if she were. And this ‘acting as if’ is another feature of a trauma-informed approach. It’s not necessary to know with certainty whether a resident has underlying posttraumatic stress in order to respond to their needs with sensitivity and compassion informed by an awareness that they might.
Implementing trauma-informed care will mark a sea change in the way care in nursing homes is provided, but it won’t happen overnight. Given the level of knowledge, awareness, and skill required to do it well, as well as limitations on resources, staffing, and training opportunities, the process will likely be incremental. Amid the complex and, at times, confusing regulatory world in which nursing homes operate, these new regulations will be just one layer within a larger web of regulations. It can be expected that the extent to which trauma-informed care is prioritized and how it is implemented will vary across local settings.
For those interested in learning more about the pending regulations and locating resources to assist them in this process, CMS has funded the guideline “Resources to Support Trauma Informed Care for Persons in Post-Acute and Long Term Care Settings.” The purpose is to provide “a comprehensive, but not all inclusive, list of resources that may be helpful for nursing homes as they work to ensure that residents who are trauma survivors receive culturally competent, trauma-informed care in accordance with professional standards of practice and accounting for residents’ experiences and preferences in order to eliminate or mitigate triggers that may cause re-traumatization of the resident (per §483.25(m) requirement that will be implemented beginning November 28, 2019).” The report contains a wealth of information and can be found at www.lsqin.org/wp-content/uploads/2018/09/Trauma-Informed-Care-Resources.pdf.
— Scott Janssen, MSW, LCSW, is a hospice social worker in Durham, North Carolina, and a member of the National Hospice and Palliative Care Organization's trauma-informed care work group.
2. van Achterberg ME, Rohrbaugh RM, Southwick SM. Emergence of PTSD in trauma survivors with dementia. J Clin Psychiatry. 2001;62(3):206-207.
3. Peters J, Kaye LW. Childhood sexual abuse: a review of its impact on older women entering institutional settings. Clin Gerontol. 2003;26(3-4):29-53.
4. Ruzich MJ, Looi JC, Robertson MD. Delayed onset of posttraumatic stress disorder among male combat veterans: a case series. Am J Geriatr Psychiatry. 2005;13(5):424-427.
5. Moye J, Rouse SJ. Posttraumatic stress in older adults: when medical diagnoses or treatments cause traumatic stress. Clin Geriatr Med. 2014;30(3):577-589.
6. Kusmaul N, Anderson K. Applying a trauma-informed perspective to loss and change in the lives of older adults. Soc Work Health Care. 2018;57(5):355-375.
7. Taylor S. Clinician’s Guide to PTSD — A Cognitive-Behavioral Approach. New York: Guilford Press; 2006:20.
8. Mittal D, Torres R, Abashidze A, Jimerson N. Worsening of post-traumatic stress symptoms with cognitive decline: case series. J Geriatr Psychiatry Neurol. 2001;14(1):17-20.
9. Martinez-Clavera C, James S, Bowditch E, Kuruvilla T. Delayed-onset post-traumatic stress disorder symptoms in dementia. Prog Neurol Psychiatry. 2017;21(3):26-31.