Abstract
Co-occurring posttraumatic stress disorder symptoms and dementia can result in increased symptoms, such as suspicion, aggression, and nightmares in Veterans that can be difficult to manage in long-term care environments. The objective of the study was to explore how the co-occurrence of posttraumatic stress disorder symptoms and dementia are understood in Canadian Veterans who are living in long-term care. A descriptive multiple case study was conducted in two Veteran long-term care facilities in Canada. Data collection consisted of semi-structured interviews with Veterans, their family caregivers, and health care providers, non-participant observation, and a chart audit. Three major themes emerged relating to symptom expression and care approach: a) symptoms are the same but different; b) differences in the complexity of care; and c) added dimensions involved in care. The results of this study contribute foundational information about co-occurring posttraumatic and dementia symptoms that can inform policy, care approaches, and potential interventions.
Keywords
Background
Co-occurring posttraumatic stress disorder (PTSD) symptoms and dementia in Veterans is associated with a range of symptoms such as war-related nightmares, physiological hyperactivity, suspicion, aggression, and re-experiencing military trauma (Carlson et al., 2008; Cook et al., 2003: Mittal et al., 2001). The symptoms associated with the co-occurrence of PTSD and dementia in Veterans have been examined primarily in case study research (Kramer et al., 2021). For example, Johnston (2000) presented three cases of U.S. combat Veterans who demonstrated increased war-related nightmares, physiological hyperactivity, suspiciousness, violent aggression, and anxiety following the onset of dementia. Mittal et al., (2001) described three cases of U.S. Veterans who had a worsening of dormant PTSD symptoms including re-experiencing combat trauma, auditory flashbacks, depression, and nightmares following the onset of dementia. Martinez-Clavera et al., (2017) explored two cases of United Kingdom (U.K.) Veterans who had a new onset of intrusive war-related flashbacks, anger outbursts, and a fear of hurting others. The emergence, re-emergence, or worsening of PTSD symptoms following the onset of dementia is thought to be the result of executive dysfunction that makes it more difficult to inhibit traumatic memories or neurodegeneration of the limbic structures (e.g., the hippocampus and amygdala) involved in emotional regulation following the onset of dementia (Mittal et al., 2001; Kramer et al., 2021).
In long-term care, symptoms associated with PTSD and dementia can be further exacerbated by “triggers” in the environment (Cook et al., 2003). It is suggested that environmental triggers (staff who speak a different language or seeing ailing bedridden patients) and interpersonal triggers (interactions with care providers, such as speaking loudly, giving commands, appearing angry or impatient), are common in most long-term care facilities, and can remind Veterans of wartime experiences causing a re-activation of distress associated with the trauma (Carlson et al., 2008; Cook et al., 2003). Long-term care facilities that have specialized units for Veterans may also trigger memories of past trauma by their inclusion of military photos, symbols, and memorabilia (Carlson et al., 2008; Cook et al., 2003).
The symptoms associated with co-occurring PTSD and dementia (e.g., increased aggression and nightmares) can be difficult to manage by health care providers, leading to frustration and burnout (Bruneau et al., 2020; Cook et al., 2003; Martinez-Clavera et al., 2017) and negative health impacts on family members (Pinciotti et al., 2016). Kang et al. (2018) noted that Veterans with co-occurring PTSD and dementia demonstrated more aggressive behaviors related to rejection of care, than Veterans with dementia alone. Similarly, family caregivers of Veterans with co-occurring PTSD and dementia have been found to be at greater risk for physical health strain and use more community services compared to caregivers of Veterans with dementia alone (Pinciotti et al., 2016). Many health care providers are also unaware of co-occurring PTSD symptoms and dementia, resulting in a potential for misattribution of symptoms to other conditions (e.g., depression or delirium), which may ultimately result in ineffective treatment strategies, or increased use of antipsychotic medication in Veterans (Bruneau et al., 2020; Cook et al., 2003; Semla et al., 2017).
Currently, the prevalence of Veterans with co-occurring PTSD and dementia is unknown; however, studies have demonstrated that Veterans have higher rates of PTSD compared to the general population. A recent systematic review reported the pooled prevalence of PTSD in older U.S. Veterans as 8.4% (Williamson et al., 2018). The authors compared these findings to community samples of older adults and found that PTSD prevalence ranged from 2% to 10% (as cited in Williamson et al., 2018). Less is known about the prevalence of PTSD in Veterans living in long-term care. A U.S. study of Veterans in long-term care found that 9.4% met the diagnostic threshold for PTSD and 15.6% met partial PTSD criteria (Cook et al., 2005a, 2005b). In a study of Canadian WWII Veterans living in long-term care, 23% met diagnostic criteria for lifetime PTSD, and 16% for current PTSD (Herrmann & Eryavec, 1994). Similarly, few studies have examined the prevalence of dementia in Veterans in long-term care facilities. A systematic review found a pooled prevalence of dementia in U.S. Veterans of 10.1%, which was comparable to other U.S. geriatric community studies (Williamson et al., 2018). This study noted that prevalence estimates ranged from 5.7% to 19.6%, with Veterans in long-term care at the higher end (Williamson et al., 2018). In addition, it has been found that Veterans with PTSD are nearly twice as likely to develop dementia compared to Veterans without PTSD (Qureshi et al., 2010; Yaffe et al., 2010). Although causal mechanisms have not been identified, it has been hypothesized that PTSD may lead to hippocampal atrophy or alterations in hypothalamic pituitary adrenal axis hormones that can result in cognitive deficits and dementia (Yaffe et al., 2010). Another possible explanation is that dementia can interfere with cognitive strategies or defense mechanisms that had previously been employed to ward off, or cope with, persistent memories of trauma (Doyle et al., 2014; Yaffe et al., 2010).
There is ongoing concern that Veterans with PTSD may be at an increased risk for dementia compared to similar-aged civilians (Veitch et al., 2013). Improved military health and battlefield survival mean that the current generation of Veterans is living longer with injuries that could put them at greater risk for dementia (Katz, 2012, 2014; Weiner et al., 2013). It is also suggested that the widespread use of improvised explosive devices (IED) in Iraq and Afghanistan has resulted in increased numbers of traumatic brain injuries (TBI) in Veterans—such trauma may increase the risk of dementia (Veitch et al., 2013; Weiner et al., 2013). Based on these factors, there is a potential for increased numbers of Veterans with dementia in long-term care facilities in the future.
In Canada, long-term care services for Veterans are in transition. With an average age of 93 years in 2019, War Service Veterans who served in WWII and Korea (Veteran Affairs Canada, 2019) are entitled to exclusive use of designated contract beds under federal-provincial agreements, but their numbers are expected to dwindle in the coming years (Office of the Veterans Ombudsman, 2013). By 2026, it is estimated that 33% of the current 600,000 Canadian Armed Forces (CAF) Veterans who have served since the Korean War will be over the age of 70 years (VanTil et al., 2018); these Veterans do not have the same access to contract beds as the WWII and Korean War veterans and, like other Canadians in provincially funded long-term care facilities, use community beds. Although a preferred admission initiative was developed by Veterans Affairs Canada (VAC) to re-profile some contract beds to CAF Veterans, the demand for these beds currently outweighs availability, and there is no confirmed long-term plan to meet the needs of aging CAF Veterans (Veteran Affairs Canada, 2019). Given the potential for larger numbers of Veterans with PTSD and dementia who may be living in community long-term care facilities in the future, there is a need to improve knowledge about this population.
The purpose of this study is to explore how the co-occurrence of PTSD symptoms and dementia is understood in Veterans who are living in long-term care, from the perspectives of the Veterans themselves, their caregivers, and their health care providers. This is the first study to focus on co-occurring PTSD symptoms and dementia in Veterans from the perspectives of those who experience and are most impacted by it in a long-term care environment. Including the perspectives of individuals with dementia has been recommended in qualitative research to provide a voice of lived experience (Carmody et al., 2015; Cridland et al., 2016). Constructivism was chosen to orient and inform this study since it focuses on understanding the human experience in interaction with the social world (Appleton & King, 2002). Findings will address a knowledge gap in the literature on PTSD symptoms and dementia among Veterans, as well as provide information within a Canadian context.
Methods
Study Design
A descriptive multiple case study design was used for this study since it allows for an in-depth exploration of this issue from multiple data sources and perspectives (Baxter & Jack, 2008). In case study research, one of the first steps is to determine the case, or unit of analysis, that is derived from the research question (Yin, 2014). Based on the research question, the case for this study was defined as a “Veteran with co-occurring PTSD symptoms and dementia living in long-term care.” This case was explored from the perspective of the Veteran with co-occurring PTSD symptoms and dementia, their caregiver, and their health care providers employed in the long-term care facility. This study was conducted as part of a doctoral dissertation and supervised by co-authors who have experience in qualitative methodology and/or health related research.
Case Selection
In case study research, bounding using real life contextual variables, such as time, space, and activity determine the scope of data collection (Harrison et al., 2017; Yin, 2014). For this study, cases were sought within former federally funded long-term care facilities which possess the majority of contract Veteran beds, with entire wings dedicated to Veterans (Office of the Veterans Ombudsman, 2013; Veteran Affairs Canada, 2019). These facilities are also similar in terms of enhanced programming (e.g., woodworking), incorporating a Veteran-friendly approach (e.g., memorial walls and enhanced remembrance ceremonies) (Veteran Affairs Canada, 2019), and having similar knowledge of Veteran-specific health care needs (Cooper et al., 2016). Examining cases within the context of Veterans long-term care facilities was thought to be an important consideration since there may be too great a variation in the level of knowledge and experience of caring for Veterans in community long-term care facilities, and we wanted to understand symptoms and presentation.
Yin (2014) recommends replication logic for selecting cases, so that it either a) predicts similar results (a literal replication), or b) predicts contrasting results but for anticipatable reasons (a theoretical replication). For literal replication, Yin (2014) states that 2 or 3 cases are required. Based on the purpose of this study, cases were selected for literal replication. All former federally funded Veteran long-term care facilities within Ontario (n = 3) were sent email invitations to participate in the study. Two facilities enabled recruitment of cases within their facility and meetings were arranged between the principal investigator and the health care team at each facility. Geographically, both the facilities were located in different regions in the province. One facility declined to be part of the study due to other competing projects. Potential cases needed to include a Veteran who met the definition of Veteran (War Service Veteran) according to VAC (Veteran Affairs Canada, 2019), who had been diagnosed with dementia by a physician and exhibited symptoms consistent with the study definition of co-occurring PTSD symptoms and dementia. Inclusion based on a diagnosis of PTSD was not feasible since most Veterans with dementia do not have a formal diagnosis of PTSD, especially if symptoms emerged after the onset of cognitive impairment. Instead, it was decided to use a study definition for, “PTSD symptoms” based on a review of the literature describing symptoms found in Veterans with PTSD and dementia. For this study, Veterans were included if they demonstrated most or all of the following PTSD symptoms that was thought to be related to military experiences: nightmares, physiological hyperactivity, suspicion, verbal aggression, physical aggression, and re-experiencing military memories (Johnston, 2000; Mittal et al., 2001; van Achterberg et al., 2001). Case selection was facilitated through a primary contact person in a leadership position at each long-term care facility and discussed with the principal investigator
Recruitment
A primary contact person at each long-term care identified potential Veterans according to case criteria and obtained consent for the principal investigator to contact the substitute decision maker (Government of Ontario, 1992). After obtaining consent from the substitute decision maker, the principal investigator then met with each Veteran to determine capacity to consent to the study. For Veterans with co-occurring PTSD symptoms and dementia, capacity to consent to the research study was determined according to the Alzheimer's Association (2004) consensus recommendations for minimal risk capacity assessment: understanding the nature of the research and of their participation, appreciating the consequences of the participation, including personal consequences, showing the ability to consider alternatives, including the option not to participate, and showing the ability to make a reasoned choice. For Veterans who were unable to consent, an email was sent to the third-party contact (who were individuals who have legal authority to make decisions on behalf of a prospective participant who lacks the capacity to decide whether to participate or to continue to participate) (Government of Canada, 2014) with information about the study. After all questions were answered, the third-party contact provided written consent for the Veterans. Once each Veteran was identified, the principal investigator contacted the participant’s caregiver by phone or email to participate in the study. Caregivers were required to be able to communicate in English, have knowledge of the Veteran’s past and present psychological and medical history, and be identified by the nursing staff as involved as a caregiver in the Veterans life. Three health care providers that were involved in the care of the Veteran were included in this study. Eligible professions included Personal Support Workers (PSW), Registered Nurses (RN) or Registered Practical Nurses (RPN), and Family Physicians (MD) or Nurse Practitioners (NP). Written consent was obtained from all caregiver and health care providers. Ethical clearance was granted by the Queens University Research Ethics Board.
Data Collection
Data Collection Methods.
Interviews
For each case, interviews were conducted with the Veteran, a caregiver, and 2–3 healthcare providers. The interviews were conducted with Veterans in the long-term care facility either in the Veterans’ rooms or in a common area depending on the Veterans’ preference. Potential challenges in obtaining consent and in conducting qualitative interviews (Carmody et al., 2015) with individuals who have dementia were addressed in this study using the following strategies. To accommodate care needs and mealtimes, the Veteran interviews were conducted in two or more sessions, lasting a total of 90–150 minutes for each interview. When interviewing individuals with advanced dementia, it is recommended to monitor for continuous consent (Astell et al., 2009). Throughout the interview, the principal investigator confirmed that the Veteran was content to continue, and, if the Veteran appeared distressed at any point, the researcher paused the interview. If they became distressed a second time, the researcher ended the interview (Slaughter et al., 2007). The caregiver and health care provider interviews were conducted by telephone, or in-person at the long-term care facility. The caregiver and health care provider interviews were each approximately 30–60 minutes in length. Interviews were conducted by the principal investigator, audio-recorded, and transcribed verbatim.
Non-participant observation
Each case included non-participant observation to observe interactions between Veterans and health care providers other residents in the long-term care environment. Observation is used in case studies to provide additional information about the phenomenon being studied (Mulhall, 2003; Yin, 2014). In non-participant observation, the researcher remains independent and does not form part of the group under observation but can step in and out of the group at will (Bloomer et al., 2012; Morgan et al., 2017). For each case, the observation was conducted by the principal investigator in the long-term care facility for an average of 2–4 hours, over the course of 1–2 days. Observation included interactions of the Veterans with health care providers during daily activities, such as mealtimes, social activities, and sitting in the day area. Field notes were recorded during the observation according to Mulhall's (2003) schema, including structural and organizational features, people, daily process of activities, special events, dialog, chronological events, and reflective diary.
Chart audit
The third form of data collection for each case was a chart audit of the Veterans electronic medical record. A chart extraction template was developed to assist with data extraction focusing on recent documented behaviors and symptoms, along with care strategies used by the health care providers. The chart audit included progress notes over the previous 6 months, the care plan, and the Resident Assessment Instrument (RAI).
Four standardized assessment tools were used to provide additional descriptive information: Functional Assessment Stages (FAST) (Sclan & Reisberg, 2005), Combat Exposure Scale (CES) (Keane et al., 1989), PTSD checklist for DSM 5 63 (PCL-5) (Weathers et al., 2013), and Neuropsychiatric Inventory –Nursing Home version (NPI-NH) (Cummings et al., 1994).The researcher and healthcare providers completed the Functional Assessment Stages (FAST) (Sclan & Reisberg, 2005) and Neuropsychiatric Inventory-Nursing Home version (NPI-NH) (Cummings et al., 1994). The FAST is a validated measure for evaluating the stage of functional decline associated with dementia, over the entire course of the illness (Sclan & Reisberg, 1992). The NPI-NH is a tool that has been adapted and validated for use in extended care facilities to characterize neuropsychiatric symptoms found in residents with dementia (Wood et al., 2000). It is used to measure the frequency of severity of the following domains, delusions, disinhibition, hallucinations, irritability/lability, agitation/aggression, aberrant motor behavior, depression/dysphoria, anxiety, sleep and nighttime behavior disorders, elation/euphoria, appetite and eating disorders, and apathy/indifference (Cummings et al., 1994). Veterans were asked to complete the Combat Exposure Scale (CES), a 7-item self-report measure of wartime stressors (Keane et al., 1989), and the PTSD checklist for DSM 5 (PCL-5), a 20 item self-report measure to assess PTSD symptoms (Weathers et al., 2013) with researcher assistance, depending on their cognitive ability.
Data Analysis
Data collection, transcription, and analysis occurred iteratively throughout the research process. Yin (2014) suggests that propositions are developed prior to case selection. Propositions are used in case study research to direct attention and focus the scope of the study (Yin, 2014). For this study, two propositions were used based on the findings of a scoping review by Authors (2018). These two a priori propositions provided a structure to converge data and compare study results within and between the cases (Yin, 2014). The propositions were: 1) There are differences in symptom expression in the co-occurrence of PTSD and dementia compared to dementia alone; 2) The co-occurrence of PTSD symptoms and dementia impacts the care of Veterans.
Within-case analysis
First, all data were collected and analyzed independently. Pattern matching is used in case study research to bring data together and compares an empirically based pattern with a predicted one (Yin, 2014). In this study, pattern matching was conducted to converge and compare results against the propositions to determine if they were supported, or if an alternative explanation was needed (Almutairi et al., 2014).
Interviews
Anonymized interviews transcripts were uploaded to MAXQDA 2018 (VERBI Software, 2018) for each case. The interview data were analyzed using thematic analysis according to Braun and Clarke's (2006) six phases, including familiarizing self with the data, generating initial codes, searching for themes, reviewing, defining, and naming themes. Transcriptions were read over several times by the principal investigator to become familiar with the data. Line by line initial coding was completed according to Saldana’s method as described in Miles et al., (2014). A second cycle of pattern coding involved reviewing the initial codes and looking for themes (Miles et al., 2014). Themes were further refined to ensure they formed a coherent and distinctive representation of the data (Braun & Clarke, 2006). The principal investigator and one co-author reviewed the initial coding frame with the first case transcripts and made revisions. The remaining transcripts were coded by the principal investigator according to the coding frame, and additional codes were added for unique concepts.
Observations
Observational data were in the form of field notes that were collected for each case and uploaded to MAXQDA 2018 (VERBI Software, 2018). Thematic analysis was used according to Braun and Clarke (2006) in the same manner that was described for interview data.
Chart Audit
Data extracted from the progress notes were analyzed using content analysis (Elo & Kyngäs, 2008). All chart audit data were reviewed and coded according to the documented descriptions of PTSD symptoms and dementia, such as suspicion, verbal aggression, and physical aggression.
With the small numbers of participants, the standardized assessment tools provided descriptive information only.
Cross-case analysis
Following the individual case analysis, a cross-case analysis was completed to identify similarities and differences among Veterans with co-occurring PTSD and dementia in long-term care (Yin, 2014). Excel tables were developed to display themes within and across cases for the cross-case analysis. The principal investigator reviewed all documents and coded all references related to symptoms and care strategies with consultation and under the review of a supervisor with qualitative methodological expertise.
Rigor
Several strategies were taken to ensure rigor (Houghton et al., 2013), framed by Lincoln and Guba's (1985) four criteria (credibility, dependability, confirmability, and transferability). Triangulation was achieved through multiple data methods (interviews, observations, and documents) from different sources (Veterans, caregivers, and health care providers) across two different sites. Field notes and memos were maintained throughout this study as part of the audit trail. In addition, coding queries were run in MAXQDA (VERBI Software, 2018) to ensure that codes were sufficiently represented within and across cases. The principal investigator engaged in reflexivity by maintaining a reflective journal to record possible biases and decisions for transparency.
Results
This study included a total of 4 cases. One case was from Long-Term Care #1, and three cases from Long-Term Care Facility #2. Originally, two cases were requested from each long-term care facility, but only one case met the inclusion criteria from Long-Term Care Facility #1, requiring a change to three cases from Long-Term Care Facility #2. In total, 19 interviews were conducted (4 Veterans, 4 caregivers, and 11 healthcare providers). Additionally, for each of the four cases, data were collected from an observation period and a chart audit. Given the relatively small number of surviving Veterans, demographic results are summarized, rather than by case, to ensure confidentiality.
The Veterans ranged in age from age 90 to 96 years and had lived in the long-term care for 1–3 years. While they all had a confirmed diagnosis of dementia (non-specified or Alzheimer’s dementia), two participants also had a diagnosis of PTSD that was made following the onset of dementia. All Veterans were Caucasian and male. Military service varied, with two Veterans having served in the Canadian Army, one in the Royal Canadian Navy, and one in the Royal Canadian Air Force. Two Veterans were deployed during WWII, one in both Korea and Cyprus, and one in Korea. Three Veterans served only during wartime, and one remained in military service until retirement. The caregivers for all four cases were either the son or daughter (3 sons and 1 daughter) of the Veteran. The healthcare providers consisted of personal support workers, registered practical nurses, registered nurses, and medical physicians. A total of 11 healthcare providers participated in the study (9 female and 2 male).
All Veterans in this study were deemed unable to consent due to cognitive impairment and third-party authorization was obtained. The FAST stages among Veterans ranged from 6b to 6d, indicating moderately severe dementia (Sclan & Reisberg, 2005). The PCL-5 and the CES could not be completed due to the degree of cognitive impairment. For the NPI-NH questionnaires, in two cases health care providers declined to complete this due to time constraints, and, in the other two cases, providers noted some uncertainty with their responses.
Three themes represented how co-occurring PTSD symptoms and dementia in Veterans are understood by participants: a) symptoms are the same but different; b) differences in the complexity of care; and c) added dimension involved in care. Due to the severity of dementia, the Veteran interviews are less represented in the analysis than the caregivers and health care providers. The health care providers are most represented in the data as they comprised the majority of interviews.
Theme 1: Symptoms are the same but different
Same but different is an overarching theme that refers to the symptomatic description of co-occurring PTSD symptoms and dementia. On the surface, the symptoms of co-occurring PTSD and dementia in Veterans are described as similar to dementia. It is only when looking deeper that discrete differences become more apparent. It is within the context of “difference” that health care providers explained their experience with PTSD and dementia. Although many of the symptoms associated with PTSD and dementia are also found in Veterans with dementia, participants noted they are of lesser intensity: “He is different because we have residents, … they are not—They have the PTSD, but not as elevated as him…..In the intensity” (Healthcare provider). Health care providers reported that Veterans with co-occurring PTSD symptoms and dementia had an increased intensity of fear, suspicion, nightmares, verbal and physical aggression, sadness, and were more withdrawn than those with dementia alone. In describing the intensity, participants asserted that symptoms associated with PTSD symptoms and dementia are always present amid care interactions. One caregiver commented that his father’s suspiciousness interferes with his ability to enjoy life by making him “feel on edge” and gives him a “lack of peace” (Caregiver). In Veterans with dementia alone, participants noted that these symptoms were more intermittent in response to specific triggers.
Fear was reported as a major difference between Veterans with co-occurring PTSD symptoms and dementia compared to dementia. The increase in fear created a heightened sense of awareness in the Veterans environment. Exaggerated startle responses were also described as common in Veterans with PTSD symptoms and dementia. A significant concern among health care providers was an increase in fear related to a lack of trust of others. This fear was most pronounced during personal care, such as toileting, dressing, and bathing. Refusal of care or aggression was frequently experienced during personal care due to the Veterans fear of being harmed. The intimate nature of these care interactions was described as causing the most fear and distress to both the Veterans and health care providers. One healthcare provider shared the following example: We cannot concentrate to do anything. But they’re, like, aggressively refusing you. They don’t have trust. Because of that fear inside them, or something, stop taking help from others, …And they are very strong, too, when they come to, because they’re get ready for fight, right? (Healthcare provider).
According to the caregivers and the medical records, the timing of symptom emergence varied across the four cases. In one case, suspicion was present throughout the Veterans’ adulthood, becoming more intense with the onset of dementia. In two cases, suspicion emerged with the onset of dementia. In one case, there was a history of suspicion, and aggression, following military service. These symptoms remained unchanged with the onset of dementia and with the initiation of antipsychotic medication in the community. However, these symptoms have been absent since admission to the long-term care facility. The health care providers noted that, when they are informed of drastic changes in symptoms following the onset of dementia, or upon admission to long-term care, they believed this to be associated with co-occurring PTSD symptoms and dementia.
Theme 2: Differences in the complexity of care
Caring for Veterans with PTSD symptoms and dementia is considered more complex, and this results in greater care challenges than dementia alone. This theme includes two subthemes: 1) more resources and 2) ineffectiveness of usual strategies.
More resources
The symptom expression of PTSD and dementia results in more challenges in providing care, compared to dementia alone. Participants described a common challenge which was the amplification of emotional responses to everyday events. For example, during personal care, Veterans will suddenly become more agitated, suspicious, yell, and occasionally strike out physically, “…we have challenges in their room in that unit, but not like him. He’s very challenging” (Healthcare provider). The health care providers recognized that these care challenges they experienced stem from the Veterans’ misperception that they are harming him, instead of helping him: Because, like I say, day-to-day is very difficult, but challenging is to: trying for him to understand that we go, we are there to help him. (Healthcare provider)
To reduce fear, the health care providers have found that more time is needed to complete care. While acknowledging the importance of taking more time, the health care providers reported that having the time was a challenge, “Even though it takes an extra minute, and, and we don’t have that extra minute, but we, we make sure they have that” (Healthcare provider). This was especially relevant to the personal support workers/registered nurses/registered practical nurses who provided most of the personal care in long-term care. They explained that the demanding nature of their work allows little flexibility. Yet, to meet the personal care needs of all residents on the unit, the extra time required for the resident with co-occurring PTSD symptoms and dementia creates a deficit in the amount of time they have to complete care tasks with other residents.
At the same time, health care providers expressed a strong desire to give their extra time to Veterans. They knew that spending extra time would avoid escalation of challenging behaviors into physical aggression. To manage the need for more time, participants have developed workaround strategies. In one case, the Veteran’s care is always left to the last of the assigned residents. This allows the healthcare providers to spend more time to meet the Veteran’s care needs, without interrupting the care of other residents. The healthcare providers have learned that re-organizing their schedule enables them to better meet the needs of both the Veteran and the other residents, “I feel like he needs a lot of one-and-one. A lot of attention. So for me, I, we take the time. We take the time. So, we kind of leave him for the last, so we have enough time for him” (Healthcare provider). Another strategy was working together as a team, so when the Veteran refuses care, the health care provider will find another team member to try. This process continues until all the health care providers on a particular shift have attempted to complete the particular care task. The additional time and effort to re-organize an already demanding work schedule adds strain to the health care providers.
Many of the participants described conflicting emotions in providing care for Veterans with co-occurring PTSD symptoms and dementia. Concerns over personal safety from physical aggression were expressed among some of the health care providers. The constant safety concerns have an emotional toll, leaving some feeling overwhelmed. At the same time, they also felt a strong sense of duty to provide proper care. The tension between their own safety, and the need to provide care, contributed an additional source of stress in their work. The following quote by one of the healthcare providers is an example of this tension: Actually, fear is the most, because I don’t want to get hurt myself. And to harm me, too. And I want to do my job, too, meantime. But, some time I feel sorry about them too (Healthcare providers).
Ineffectiveness of usual strategies
This theme was of particular concern to the health care providers who explained that many usual strategies used to manage behaviors associated with dementia can be not only ineffective with co-occurring PTSD symptoms and dementia but result in increased care challenges. For instance, redirection is a common strategy used to manage symptoms associated with dementia, such as agitation. It involves distracting the individual with another thought or activity until the behavior is reduced or eliminated. The health care providers noted that one of the main challenges in Veterans with PTSD symptoms and dementia is the ineffectiveness of redirection to manage challenging symptoms behaviors. They also noted that using redirection in this population can also result in an opposite effect of exacerbating PTSD symptoms. The health care providers associated the inability to redirect with the Veterans re-experiencing past situations. When they try to distract the Veteran with another activity, he becomes more alarmed and entrenched in his beliefs, fearing that others will harm him in some way: Yeah. So, we cannot say, “No, it’s nothing’s happening.” They don’t believe you, like, paranoid, and they think that somebody coming to kill them, somebody coming to steal things from their room, and, poison them (Healthcare providers).
The lack of effectiveness of redirection adds to the care challenges, as few alternate strategies were consistently effective. The documentation noted several instances where the Veteran could not be redirected. In most of these situations, the health care provider left and came back later, opting “to wait until he forgets what he is agitated about” (Healthcare providers). In a few situations involving physical aggression, emergency codes were called to summon for other health care providers to assist, and medication was used.
In addition to the ineffectiveness of usual strategies, health care providers and caregivers report that there are more fluctuations of symptoms in Veterans with PTSD symptoms and dementia. They have found that, since symptoms are always present and underlying, there are constant fluctuations throughout the day, making it more difficult to anticipate the type of reaction they will have. Without a consistently accepted approach, care is more challenging; typically, participants were unable to identify an observable trigger for the fluctuations in symptoms, leaving them with a sense of trepidation for a sudden reaction: It can be anything. …And, and I don’t know what’s going to trigger it, … I’ll come along and, I’m always trying—Now, I try to figure out what’s going to set him off, what’s going be the trigger, you know? (Caregiver).
Changes in symptoms without an observable trigger make it more difficult to predict responses to care interventions, which is more challenging to manage on a day-to-day basis. The inability to determine an approach that will be consistently accepted makes it more difficult for both health care providers and caregivers: And, you know, trying to understand it. And then, ah, you know, and then I have, you know, a lot self-doubt from like, “Am I saying the right thing? Am I doing the right thing?” Um, you know, that sort of thing (Caregiver).
Theme 3: Added dimension involved in care
This theme focuses on the strategies for providing care that participants reported as effective. This theme has three subthemes a) building trust, b) ensuring routine and flexibility, and c) knowing the story.
Building trust
All health care providers reported that providing care for Veterans with co-occurring PTSD symptoms and dementia requires a trusting relationship. While the importance of having a positive relationship was recognized for all residents with dementia, there was an added dimension of care required for Veterans with PTSD symptoms and dementia. When caring for this population, health care providers must make an intentional effort to connect with Veterans, to help them to feel safe. Participants recognized that building trust was a process that takes time. At the point of admission, it is understood that trust is not yet established and that more time and effort is needed with Veterans with PTSD symptoms and dementia. Many different interventions were described; all designed towards reducing fear and helping Veterans feel safe. One healthcare provider described using a more relational approach instead of a task-oriented approach: So, taking time. And slowing things down is very important. Instead of getting up and being task-orientated (Healthcare provider).
Health care providers stressed the importance of establishing an emotional connection before approaching any care interaction. Slowing down to be present in the moment and listening are ways that a sense of connection is developed. Taking extra time to listen while also meeting individual needs are ways that health care providers demonstrate that they can be trusted: Relationship is very important. … listening to them … before you approach them to do any care, listen to them, and, like, make a connection. Then he will let you do some, but like you go like a stranger even though you a have certain period of time you’re trying to do your job (Healthcare provider).
Overlooking these approaches (e.g., being rushed) was identified as a trigger for increased agitation, anxiety, suspicion, or aggression. The task-oriented nature of the work was seen as an impediment in meeting the need for extra time. Planning ahead and allowing for extra time resulted in less refusal of care. The health care providers explained that they plan and adjust their work schedule to make extra time: A:… that’s better to go that way. You cannot, like, do quick work with them. No. You have to have your time, extra time,…. Q: Almost a plan. A: Plan. Yeah. Otherwise…Because… they, they have that fear inside them. No, we can’t forget that. So, if, they think you’re harmful person to them, they never allowed you to do that. So, before that, we have to build up the relationship and “I’m not harming you, I’m going to do this. This is benefit for you.” (Healthcare provider).
Empathy was described as an important part of building a trusting relationship, conveying a message of, “I care about you” (Healthcare provider). This was distinguished from sympathy, which was not found to be effective, since it could be interpreted as pity. Empathy also gives the health care providers an appreciation of the Veterans’ perspective, motivating health care providers to provide a caring approach. The components providers described for building trust were not documented as a strategy in any of the care plan documentation. Rather, these interventions were passed informally through verbal communication among health providers. Other specific strategies included in the care plan were “validating his concerns,” “giving choice and control” (Document).
Caregivers expressed conflicting feelings towards the care challenges in the long-term care facility. On one hand, there is a sense of loss and protection towards the parent that they knew prior to dementia, “I know it’s not my dad, who he was” (Caregiver). On the other hand, there are feelings of tremendous guilt about the challenges in long-term care, “Yeah. Like, he has trained professional nurses, ah, that can help him, ah, but he doesn’t 80 trust them to do that” (Caregiver). For caregivers, one particular challenge was receiving a call from the long-term care facility informing them that their parent had been physically aggressive towards staff, “And I guess that’s why I feel so bad, too. Because I feel like going, ‘Oh my God, Dad, like, these people are…’ you know, looking after you and doing the best for you and…” (Caregiver). Caregivers report challenges related to their changing role from being a daughter or son to being a primary caregiver and making decisions, “being the parent” (Caregiver). Although they felt responsible for their parents’ safety and wellbeing, they also felt helpless to make their symptoms better. Difficult past relationships between the Veteran and caregiver added to the complexity of assuming the role of the primary caregiver.
Ensuring routine and flexibility
A constant routine in daily schedules and ensuring the consistency of care providers give a sense of familiarity and safety. For some of the Veterans, changes in daily routine caused an increase in suspicion, and sometimes aggression. Several of the health care providers discussed the importance of having regular full-time staff care for Veterans. When there are staffing changes or new staff, the Veteran does not recognize them and will refuse care more often. A physician highlighted the importance of consistency of health care providers in the following statement: They may not know your name, but they recognize your face and they recognize that you’re somebody that they can trust because they’ve had that experience with you before (Healthcare provider).
Interestingly, having the same health care providers is not always effective, and can at times exacerbate symptoms. In these situations, there is a need to have flexibility in staffing arrangements and switch with another health care provider. This was noted to occur more often in Veterans with co-occurring PTSD symptoms and dementia. For example, 3 out of the 4 Veterans had paid companions several times a week as a strategy to help manage behavioral challenges and provide additional one-to-one time. In two cases, having a consistent companion resulted in increased suspicion. The physician shared the following example: They start to distrust them and be paranoid that this companion is, somehow, wanting to harm them. …on the flip-side, they’re okay with having the consistent nursing staff. So, there is that flip-side, and I would say that probably is more likely to happen in somebody with more of those symptoms of PTSD. Whereas for somebody with dementia, it can be really helpful to have that consistent person for a long term (Healthcare provider).
Knowing the story
Knowing about the Veteran’s life story, including military trauma history was described as an important part of informing care approaches. While understanding the life story is also helpful in the care of other Veterans, a more intentional effort was taken for Veterans with PTSD and dementia to obtain detailed information on military experiences. Knowledge about past military experiences provides a lens to interpret current symptoms. This information can be used to inform care approaches and in the identification of potential triggers.
The Veterans life stories were routinely collected from family upon admission to the long-term care facility. Interestingly, although they were the main source of information, family caregivers reported they knew very little about their parents' past military trauma. The family caregivers explained that they were only aware of positive military memories, “Well, he, he didn’t talk about any of the, like, anything bad, but of his comrades” (Caregiver). One of the physicians also noticed a trend among Veterans who avoid talking about the negative aspects of their military experience and instead only talk about the positive aspects. As a result, families may be unaware of past trauma and mistakenly report that there was none: …some family members will say, “Oh, yeah, they talked about the war all the time. They didn’t have any, any combat or any trauma.” But maybe, maybe they did. Maybe they just don’t talk about that (Healthcare provider).
A similar finding was made in the Veteran interviews. In all four cases, the Veteran easily and openly spoke about their positive memories of the military. However, when asked about negative memories, there was a clear reluctance to share experiences. In two cases, the question was completed avoided. For example, when asked if he could share a story with me, the Veteran responded with, “not really” (Veteran), and, in another case, the Veteran said, “next question, thank you” (Veteran). Some of the Veterans responded that there was no point in remembering those memories, “What’s the use in thinking about it? You can’t do anything about it?” (Veteran) and, “What’s the sense? Who, who you going to get even up with?” (Veteran), and “Um you hardly had time to think about that” (Veteran). Trying to forget about the negative experiences by not thinking about them a common strategy shared among Veterans, “This is behind, behind you” (Veteran), and., “…we was black out things out of minds”, and “…but it’s all forgotten now” (Veteran), “Uh! I don’t think about it” (Veteran).
Discussion
The results of this study offer new insights into co-occurring PTSD symptoms and dementia in Veterans and provides an important contribution to the literature as it relates to our understanding of dementia care for Veterans. Veterans with co-occurring PTSD symptoms and dementia are understood as having a greater intensity of symptoms (e.g., suspicion and aggression), and an underlying fear, that may distinguish them from Veterans with dementia alone. Case studies of Veterans with PTSD symptoms and dementia living in long-term care and in the community also note an increased intensity of symptoms, including frequent and vivid nightmares (Johnston, 2000; Mittal et al., 2001), sudden aggression towards others (Johnston, 2000; Mittal et al., 2001; van Achterberg et al., 2001), and increased and enduring suspicion of others stealing from them (Johnston, 2000). However, two studies that looked specifically at aggression in Veterans with PTSD and dementia did not find any difference in the risk of aggression (Ball et al., 2009), or clinical presentation of aggression (aggressive agitation, non-aggressive agitation, verbal agitation, and paranoia) compared to Veterans with dementia alone (Verma et al., 2001). Since these studies only looked at the frequency of aggression and behavior disturbance, it is possible that there may be other differences, such as the intensity of symptom expression. While it’s interesting to note that the literature does not explicitly mention the presence of fear in Veterans with co-occurring PTSD symptoms and dementia (Johnston, 2000; Mittal et al., 2001; van Achterberg et al., 2001), similar descriptions of fear are found in the literature describing PTSD and dementia in Holocaust survivors (Adams et al., 1994; Teshuva & Wells, 2014). In Holocaust survivors, relocation to long-term care was found to induce feelings of fear and helplessness by reactivating traumatic memories (Adams et al., 1994; Teshuva & Wells, 2014). As in this study, David (2005) notes that in long-term care, fear of harm to Holocaust survivors can lead to refusal of care. Fear is also strongly represented in the PTSD literature, where the presence of fear is recognized as a core feature of PTSD, and a target for treatment interventions (Jovanovic & Ressler, 2010; Kaczkurkin et al., 2017).
Among the four Veterans in this study, the pattern of PTSD symptom expression differed: two Veterans experienced symptoms following the onset of dementia, one had a worsening of symptoms following the onset of dementia, and one no longer had observable symptoms following admission to long-term care. The literature reports similar patterns where PTSD and dementia symptoms first emerge, re-emerge after several years, or worsen following the onset of dementia (Johnston, 2000; Mittal et al., 2001; van Achterberg et al., 2001); however, there is no mention of a reduction of symptoms following admission to long-term care. It is possible that admission to long-term care serves as a trigger for past trauma in some Veterans, resulting in feelings of powerlessness or helplessness, in response to the long-term care environment. This has also been found in Holocaust survivors and former prisoners of war (POW), where admission to long-term care can be a painful reminder of past trauma (David, 2005). The institutional environment, locks on doors, and authority structure can impinge on one’s sense of autonomy and control (David, 2005), triggering intense memories of powerlessness experienced during the war (Buffum & Wolfe, 1995). For example, Buffum and Wolfe (1995) note that, upon admission to long-term care, a former American POW began asking permission to use the washroom. Under these circumstances, this change in presentation could potentially represent another way in which co-occurring PTSD symptoms and dementia are expressed.
Cook et al., (2003) notes that there are a number of care challenges in the provision of care for older adults with co-occurring PTSD symptoms and dementia living in long-term care. This study also found there are more challenges involved in the caring for Veterans with co-occurring PTSD and dementia. It has been suggested that these types of care challenges can arise in older adults with co-occurring PTSD symptoms and dementia from the misinterpretation of neutral sensory stimuli, also known as “triggers”, that are reminders of past traumatic experiences (Cook et al., 2003). For example, Cook et al., (2003) notes that the interpersonal styles of the health care providers, such as an authoritarian approach, may trigger memories of past trauma, resulting in challenging behaviors. The health care providers and caregivers in this study hypothesized that during personal care, Veterans may be triggered to re-experience past military experiences (e.g., experiencing a traumatic memory as if it is happening again in the here and now), often leading to increased agitation and aggression. Similarly, the health care providers and caregivers noted that redirection was often ineffective in reducing the Veterans’ agitation and aggression. It is possible that the ineffectiveness of redirection may also be due to these symptom differences (e.g., re-experiencing) in Veteran with co-occurring PTSD symptoms and dementia.
Similar types of care challenges have been noted in Holocaust survivors with dementia who live in long-term care (Glicksman, 2017; Rosenfield, 2001). David (2005) notes that triggers can cause a flooding of past traumatic memories but can feel to the individual as though they are reliving the memory. The experience of extreme distress, fear, and anxiety can result in verbal and physical aggression towards health care providers (Teshuva & Wells, 2014). One strategy for reducing care challenges in Holocaust survivors has been to identify common environmental triggers that can be present in long-term care environments (David, 2005). It has been suggested that raising awareness among health care providers of the types of common triggers can help to eliminate or avoid these cues (Cook et al., 2001). Cook et al., (2001) developed a list of PTSD related triggers for Veterans in long-term care, such as authority figures, loud noises, and being approached from behind. While triggers are very individualized based on trauma experience, health care providers need to be aware of the types of triggers common to this population. Without accurate identification of triggers, there is a risk that Veterans will continue to experience the distress associated with these reminders, potentially resulting in ongoing care challenges. While the importance of recognizing triggers was noted in the findings of this study, the data suggests that identification of triggers is difficult at times, especially when an immediate cause and effect could not be detected. Additionally, in many situations, symptoms were still present despite the removal of known triggers. Although it is possible that additional triggers were present, but not identified, it may be that the other underlying symptoms associated with PTSD and dementia, such as fear, were still present.
Although caring for Veterans with co-occurring PTSD symptoms and dementia was found to take more time and resources, there were no indications in the care plan for the additional challenges of caring for this population. Allocating the same resources to this population without considering the differences in care complexities, may contribute to the difficulty in meeting the Veterans care needs. Despite the increased demands in care, the health care providers valued working with these Veterans and wanted what was best for them. Developing self-care strategies, along with other ways to assist health care providers to deal with the challenges of caring for Veterans with co-occurring PTSD symptoms and dementia, will be an important consideration to secure and retain health care providers. Family caregivers were also directly impacted in their own experience of managing ongoing stressors associated with their loved one’s care. The emotional toll on family caregivers of older adults with dementia in long-term care is well documented (Gaugler et al., 2004; Givens et al., 2012). However, there is no literature describing how the added complexities associated with care for a patient with co-occurring PTSD symptoms and dementia in long-term care impact their family caregivers.
In this study, the importance of intentionally building trust as a specific strategy was recognized among health care providers as the most effective way to respond to the Veterans heightened levels of fear and mistrust, to establish a sense of safety. The goal, then, is not just to establish a strong therapeutic relationship as would be expected in any health care transaction, but to build trust, which then takes on the level of an explicit intervention. In this way, building trust is a focused strategy to address the Veterans underlying feelings of vulnerability, fear, and mistrust. Flannery (2002) also suggests that that “restoring caring attachment” (p. 284) is an important aspect of caring for individuals with dementia who have suffered trauma, in order to establish their sense of safety. Interventions to promote basic trust in care providers, such as spending time (David, 2005) and establishing safety (Teshuva & Wells, 2014), were also identified in Holocaust survivors in long-term care (Adams et al., 1994). Developing meaningful and positive relationships, described as “mutual caring” (p. 528), was suggested as a way health care providers could promote safety and trust (Teshuva & Wells, 2014). Teshuva, Borowski and Wells (2017) found that Holocaust survivors required a more flexible and empathetic approach to accommodate trauma-related responses, such as allowing extra time during the everyday aspects of care to address heightened anxiety and sensitivity.
While the importance of intentionally building trust as a specific strategy was recognized among the health care providers in this study, it was not reflected in the documentation. Instead, care plans focused on standard dementia strategies, such as giving validation, which are generally positive for all individuals with dementia, but they do not reflect the extra lengths that are taken to build trust. Developing standardized approaches to build trust helps to formalize and legitimize this strategy for caring for Veterans with co-occurring PTSD symptoms and dementia. Without documented approaches, new or casual staff will not be familiar with individualized approaches, increasing the risk of inadvertently provoking a negative response.
Finally, this study underscores the importance of knowing a Veteran’s life story as an essential part of effective care. Understanding military trauma helps to make the link to current behavior and helps to identify any potential triggers. At the same time, the findings of this study highlight the challenges involved in eliciting Veterans’ military history. Many Veterans returned from war and resumed their occupations, avoiding any further connections to the military (Buffum & Wolfe, 1995). However, some may have lingering psychological symptoms, such as anxiety and depression, that were attributed to other causes (Buffum & Wolfe, 1995) due to a military culture that viewed mental health disorders as a sign of weakness (Montgomery, 2017), and a generational culture that avoided speaking about violence (Flannery, 2002). As a result, Veterans returned home and did not talk about any troubling memories of their military experience (Montgomery, 2017). Since Veterans did not talk about their military experiences, relying on family members to provide information on trauma history may be problematic. As was found in this study, the majority of caregivers knew little information about their father’s trauma experience. More importantly, most of the information their fathers had shared were positive memories, with little reference to negative memories. This omission could incorrectly lead caregivers to assume that their father did not experience trauma. Health care providers also need to be aware of the possibility of trauma, even when not reported.
Limitations
The focus of this study was to describe the experiences of a small number of Canadian Veterans with co-occurring PTSD symptoms and dementia, their caregivers, and health care providers. Including the perspective and voice of Veterans with dementia makes a contribution towards addressing a recognized gap in qualitative research and provides strategies for managing perceived challenges with consent. Given the variability seen in the four participants, future studies should include a greater number of Veterans from different long-term care facilities to provide a better understanding of the diversity within this group. Future research should also include Veterans who belong to a greater range of ethnic/racial, gender, and sexual populations to enhance transferability of the findings. The inability to confirm the presence of PTSD is a limitation of this study. Since there is no screening tool to confirm the presence of PTSD in individuals who are cognitively impaired, efforts were made to utilize a definition of co-occurring PTSD symptoms and dementia derived from the literature. Due to overlap in symptoms, it is possible that Veterans had symptoms associated with dementia, or another mental health illness co-occurring with dementia. Although experiencing military trauma was included in the inclusion criteria, what constituents a traumatic experience is highly individualized. Veterans’ reluctance to talk about their trauma history complicated this avenue of inquiry. Also, other forms of non-military-related trauma may have occurred in a Veterans’ lifetime could have resulted in PTSD symptoms or exacerbate earlier trauma symptoms.
Conclusion
Canadian Veterans of WWII or Korea with co-occurring PTSD symptoms and dementia have unique health care needs that are different than Veterans with dementia alone. Results from this study show many levels of complexity in caring for these Veterans. Increased care challenges require more time, impacting the ability of health care providers to complete their work, while also requiring more emotional effort. Developing successful strategies requires additional focus on building trust. Moving forward, it is important for long-term care organizations to recognize the increased complexity and needs of this population. Implementing care processes that are better aligned with the care needs of this group of Veterans could better support the Veterans, caregivers, and health care providers. Identification of the co-occurrence of PTSD symptoms and dementia is difficult and requires a more nuanced understanding of the underlying qualities of symptoms.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
