Barriers and facilitators to care for agitation and/or aggression among persons living with dementia in long-term care

Ethics approval was acquired through the Conjoint Health Research Ethics Board (REB-22–1100), and permission was granted from all organizations.

The sampling frame consisted of persons involved in the care or planning of care of PLWD in LTC. Specifically: (1) physicians (e.g., family doctors, psychiatrists, and geriatricians), (2) nurse practitioners, (3) administrators and decision makers, (4) nursing staff (e.g., registered nurses, licensed practical nurses), (5) allied healthcare workers (e.g., recreational therapists, occupational therapists, physiotherapists, social workers), (6) care aides, and (7) LTC residents and family members. Participants were all 18 years or older, and English-speaking. No other restrictions were used.

Rolling, snowball and purposive sampling of participants were used, with the latter ensuring representation of diverse sex, gender, race/ethnicity, and urban/rural perspectives. We recruited persons working across healthcare disciplines (e.g., physicians, nurses, allied healthcare workers, etc.). 70% of the total resident population, and an estimated 89% of care staff, are female in LTC [15, 16]. Therefore, to ensure fair representation, male participants were purposively recruited across all disciplines [15]. Participants were recruited from urban, suburban and rural sites to increase understanding of the organizational differences and similarities between geographical regions.

Recruitment posters and email advertisements were sent out across four local LTC facilities. The study team further recruited participants via our own networks. To ensure representation at a national level, advertisements were posted to social media platforms (e.g., Twitter). Lastly, persons who consented to participate in a previous Delphi panel study developing a novel care pathway for agitation and/or aggression among PLWD in LTC could also consent to being contacted about participating in a semi-structured interview [17]. In the Delphi study, panelists were recruited to complete several rounds of a Delphi survey to create a clinical care pathway suitable for the identification, diagnosis, and management of agitation and/or aggression symptoms among PLWD in LTC [17]. Panelists were recruited via the same 4 LTC centres via purposive and snowball sampling using poster and email advertisements [17]. They were also recruited via research team contacts and networks [17].

Semi-structured interviews (45 to 60 min) were conducted one-on-one with participants until thematic saturation was reached. No compensations were offered to participants of the study.

Interviews occurred online using a password-protected meeting using the platform “Zoom” in a confidential environment. Participants’ personal information was not shared outside of the research team. All interviews were conducted, transcribed, and verified by one researcher. The interviewer is a cis female graduate student. The interviews were audio recorded using an audio recorder, de-identified using pseudonyms, and transcribed verbatim using the A.I software “Otter.ai”. If audio recordings had identifying information, they were transcribed by hand. Each transcript was verified against the corresponding audio recordings for accuracy. All original recording files will be kept on the password-protected university server for a minimum of 5 years following transcription, in accordance with [redacted] data retention policies.

Interview guides were developed by the research team based on existing evidence, expert experience and framed with the Theoretical Domains Framework (TDF), as it identifies influences on healthcare providers’ and patients’ behaviours relative to evidence-based recommendations [18]. The TDF was chosen over other frameworks because it comprehensively captures a range of mechanisms that influence behaviours, creating a foundation for prospective behaviour change interventions [19]. The TDF can be mapped to the Capacity, Opportunity, Motivation Model of Behaviour (COM-B) within the Behaviour Change Wheel (BCW) [20]. The COM-B can then be used as a stepping stone to link these sources of behaviour to behaviour change interventions and clinical implementation [21].

Two separate interview guides were created for: 1) healthcare practitioners (e.g., physicians, nurses, allied healthcare workers) and; 2) caregivers and family members. Questions covered all 14 domains of the TDF (e.g., knowledge, skills, etc.). The interview guides can be found in Additional File 2. The aforementioned definitions of agitation and aggression were followed when creating the interview guide. Barriers/facilitators that may exist at diagnosis/detection, care management and coordination, and treatment (mild/moderate and severe/acute) of agitation and/or aggression were explored among PLWD in LTC. The guide was adapted for suitability and/or appropriateness to ensure both caregivers and healthcare practitioners could answer.

Results were reported as per the 32-item COREQ checklist for explicit reporting of qualitative studies involving semi-structured interviews [23]. A reflexivity statement is shown in Additional File 1.

Semi-structured interviews were conducted between December 2022 and February 2023. 18 participants were interviewed across the 4 LTC centres, with the majority being female (n = 15), between the ages of 35–64, born in Canada (n = 15), White (n = 15) and English-speaking (n = 18) (Table 1). Participants held a variety of roles within LTC: family caregivers and spouses (n = 5), family physicians (n = 4), nurses (registered nurses, licensed practical nurses) (n = 4), healthcare aides, executive medical directors and quality practice leads (n = 4), and other allied healthcare workers (i.e., recreational therapists, occupational therapists and spiritual care practitioners) (n = 5).

Results are presented as barriers and/or facilitators across several larger categories (Fig. 1): (1) detection and diagnosis, (2) Care coordination and management, (3) Mild-to-moderate Treatment, and (4) Acute/Severe treatment. Themed codes and associated interviewee quotes are indicated by italics as shown below. Tables 2, 3 and 4 demonstrate all codes and categorized themes which depict all barriers and facilitators to care identified during the interviews, with detailed quotes in Additional File 3. Participant roles were anonymized to protect participant confidentiality, but Participant ID is shown to represent diverse participant perspectives.

Several main facilitators were described at detection and diagnosis. Agitation diagnostic tools were reported as advantageous because they can be easily administered by different healthcare professionals and produce easy-to-understand results. As well, using agitation diagnostic tests were considered useful because they allow healthcare practitioners to compare agitation between residents and keep assessments objective. Interview participants also advocated for increased training among healthcare providers to use agitation screening tools. Lastly, allied healthcare workers praised using the Resident Assessment Instrument (RAI) along with counting the number of aggressive or agitated incidents as facilitators to diagnose agitation.

“Well, the advantage is, it actually outlines the signs and symptoms […] so that it's readily available and reproducible […] and somebody who's unskilled can actually use a lot of these tools.” (Participant 3)

Several barriers to care at detection and diagnosis were identified. Firstly, certain diagnostic tests may prove difficult to administer because they are not adapted for persons with cognitive impairment. Interviewees reported difficulties in understanding how agitation diagnostic tests work. And, differing levels of healthcare provider familiarity with agitation diagnostic tools may affect how comfortable and competent they are with administering them. There were logistical challenges to using agitation tools because tools were commonly time consuming, and required adequate healthcare provider availability. As well, diagnosis of cognitive issues took a long time, which delays diagnosis of agitation and/or aggression:

“[T]he whole process of diagnosis took about three years, and the cognitive neurologist was seeing us every six months, and she would test him every time with different mental tests…” (Participant 1)

Furthermore, diagnosis of agitation and/or aggression took a long time, which can delay the onset of treatment. Another caregiver described a lack of available diagnostic tests for agitation for PLWD in LTC. Diagnostic care practices also commonly overlook hypoactive behaviours in dementia that are comorbid to agitation and/or aggression:

“The hyperactive [resident] usually attracts the attention of everybody because they're distressed, yelling, screaming, fidgeting, wandering, moving, so they're active, whereas the hypoactive – that's where people can be missed” (Participant 3).

Although cognitive impairment and hypoactive behaviours are not specific to agitation and/or aggression, a delay in diagnosis of cognitive impairment was interpreted by participants to consequently delay the detection of associated agitated and/or aggressive behaviours.

A key facilitator to the coordination and management of care was using family members to help provide care, to help calm residents and direct the course of care. Secondly, interviewees supported using personalized and interdisciplinary approaches to care to improve confidence in care plans. Components of personalized care included having a supportive and personalized environment for the resident to physically live, and having a checklist of precipitants to consider (e.g., basic needs, food, etc.) for each resident. As well, specialized or interdisciplinary care teams were needed to develop care plans and management strategies:

“[W]e do have our interdisciplinary team that regularly debates and we discuss each resident several times a year, and then more so if needs arise. And so it's anywhere from HCA to physio, TRT, social work, dietary, the entire interdisciplinary team.” (Participant 10)

In terms of barriers, several participants reported a lack of action among care workers to address agitation and/or aggression concerns among residents, and a lack of staff-to-staff and staff-to-family caregiver communication as a barrier to consistent and quality care for agitation. There were cultural and language barriers to care for residents identifying as persons of colour, and constantly changing directives in LTC facilities or a lack of existing directives to address agitation and/or aggression. Environmental barriers included the presence of constant loud noises and unideal room configurations for PLWD in LTC. Finally, a lack of available resources to provide care was raised as a crucial barrier to care, with a particular focus on the cost of care, staffing issues and limited time for healthcare providers to provide care.

“So there was one LPN [licensed practical nurse], and three healthcare aides for 30 patients with dementia. It wasn't enough.” (Participant 1)

There were several reported facilitators to administering medications including routine monitoring of medications, having an interdisciplinary team available to prescribe medications, and an easy access to prescriptions for agitation medications:

“And so how [medications are] actually prescribed is, it becomes the doctor's orders, ultimately, but the doctor does rely on feedback from the nursing staff as well on what's been effective or not.” (Participant 9)

Various barriers to using medication to treat mild-to-moderate agitation and/or aggression included barriers due to biological mechanisms, presentation of severe agitation, and drug shortages and availability. There were also challenges in identifying side effects from the drugs, in monitoring the medications, and in physically administering medication to residents:

“Challenges in administration. Challenges if there is not enough monitoring to see the effects of these drugs. Challenges in explaining to the caregivers what to look for in terms of side effects or other effects from the drugs.” (Participant 6)

Facilitators to using non-pharmacological interventions included incorporating intentional use of non-pharmacological treatment strategies, routine monitoring of non-pharmacological approaches, and having familiar and trustable healthcare providers with the competence and training to administer non-pharmacological treatment approaches:

“They use different activities - recreational activities. […] So they would try to redirect him with activities.” (Participant 1)

In terms of barriers to using non-pharmacological interventions for agitation and/or aggression, interviewees reported a lack of training specifically for non-pharmacological treatment approaches among healthcare providers, and a lack of non-pharmacological interventions available in LTC. A logistical challenge included difficulty coordinating timing for interventions among groups of residents. Treatment strategies often relied on medication because it is convenient, with an easy access to prescriptions for agitation medications, thus non-pharmacological interventions were underused. The need to use trial and error to select a non-pharmacological intervention was also inconvenient.

“I think the only thing is that [non-pharmacological treatments are] actually not used [that] often. The default is drugs, […] because drugs are the easiest. Given the staffing shortage, it seems to be the default.” (Participant 6)

A key facilitator to non-pharmacological treatment for acute/severe agitation and/or aggression was having non-pharmacological options available for acute/severe agitation and having a least restraint policy in LTC. A facilitator to pharmacological treatment was choosing to use chemical restraints because agitation and/or aggression symptoms are too severe due to safety concerns for the resident and healthcare providers:

“We need something to work quickly because somebody else will get hurt if we don't act sooner.” (Participant 8)

An overall barrier for acute/severe agitation treatment was the reliance on physical and/or chemical restraints. As well, agitation symptoms being too severe served as a barrier to using non-pharmacological interventions for acute/severe agitation and/or aggression:

“When a person is in that extreme agitation [...] you've determined that this is the immediate course of action [...] to get Haldol [or] Seroquel, whatever, into that person.” (Participant 10)

Several codes arose regarding barriers and/or facilitators to care at a systemic and policy level in LTC. An unclear awareness or availability of geriatric medicine or geriatric psychiatry services in LTC served as a barrier at the detection and diagnosis of agitation and/or aggression. Conversly, having physicians more actively involved in care in LTC centres resulted in less referrals and was a facilitator to care at detection and diagnosis. Lastly, as previously mentioned, interviewees reported that having a least restraint policy in LTC was a facilitator to providing non-pharmacological interventions.

The most frequently reported methods of diagnosing and monitoring agitation and/or aggression symptoms in LTC centres was through two main charting means: the Behaviour and Symptom Mapping Tools and the RAI (RAI-Minimum Data Set (MDS) 2.0). Interestingly, no interviewee mentioned the use of an agitation and/or aggression psychometric tool, bringing the availability of agitation and/or aggression diagnostic tools in LTC into question. This barrier relates to issues with availability of resources in LTC. Most of the psychometric tools examined in a recent systematic review were not compared to a reference standard, and there were no studies that examined the BSMT or RAI-MDS 2.0 questions [25]. Therefore, there are no reported sensitivity, specificity, or minimally clinical important difference measures seen for these tools. In turn, it is unclear how these tools perform clinically. There are many reasons for this – agitation and aggression are very prominent observable symptoms, and their reporting needs to be tied to antecedent events through informant accounts to be useful to healthcare providers [26]. As well, behavioural and psychological symptoms of dementia (BPSD) often overlap, with agitation and aggression often expressed together, resulting in conflation between symptoms [2]. Beyond tools, there are also other comprehensive approaches to assessing agitation and/or aggression described in the literature, such as the “Describe, Investigate, Create, and Evaluate” (DICE) method [27]. These approaches were also not mentioned in the interviews. To ensure residents are receiving the best means of agitation and/or aggression detection and diagnosis, more research is needed to validate current tools among PLWD in LTC, and determine whether psychometric tools should be implemented in regular practice.

The diagnosis for agitation and/or aggression is typically finalized by physicians in LTC, using aggregated information collected from members of the interdisciplinary care team. The collaborative approach to care, where all interdisciplinary healthcare providers and/or friends and family caregivers have input into resident care plans, is crucial to the diagnosis and management of agitation and/or aggression. This facilitator demonstrates strengths pertaining to reinforcement of practices, healthcare providers’ perceived identity, and creating goals of care. A collaborative, interdisciplinary approach effectively offsets physician time and increases confidence among physicians to make diagnoses [28, 29]. As well, residents receive a comprehensive assessment outside of a physician’s diagnosis, using the maximized complementary strengths of the entire care team [28, 29]. Interdisciplinary care teams uphold person-centred care values, by addressing the unique needs of each resident whilst giving shared decision making to healthcare providers, residents and family and/or friend caregivers [28, 29]. Given the benefits, any chosen method to detect or diagnose symptoms of agitation and/or aggression should account for interdisciplinary teams and family and/or friend caregivers.

In a recent systematic review, the majority of agitation and/or aggression tools lacked a comprehensive, interdisciplinary assessment of residents [25]. The Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD) and the Neuropsychiatric Inventory (NPI) were the only tools that seemed to account for multiple stakeholder perspectives (i.e., assessing caregiver distress along with resident symptoms). A potential reason for this is that agitation and/or aggression symptoms are predominantly detected via the observation of residents, or through informant reports of the frequency of symptoms, resulting in only observation-based and informant-rated tools available [26]. However, these assessment methods are limiting, where only observable points of contact with the resident can be evaluated [26]. More research is thus needed to determine whether incorporating an interdisciplinary evaluation approach into current assessment methods is more clinically beneficial to residents.

Family/friend caregivers and allied healthcare workers felt that training in LTC is inconsistent, lacks staff-to-staff and staff-to-family caregiver communication, and does not properly address resident needs. These issues relate to several challenges, including issues with knowledge and skills among healthcare providers, limited resources, and challenges in staff’s perceived identity. Ultimately, training standards within LTC settings vary province-to-province across Canada [30]. Training for crucial healthcare practitioners in LTC (e.g., physicians, nurses) is not standardized, and often does not embrace a geriatric-focused lens [30]. In the analyses, interviewees raised concerns that these variable care protocols for agitation and/or aggression do not meet residents’ needs. The variability seen in training adversely impacts management of agitation and/or aggression among PLWD in LTC. There is a need for standardized practices for addressing agitation and/or aggression symptoms among PLWD in LTC among healthcare practitioners in LTC, to improve the efficiency and quality of care.

Non-pharmacological interventions are considered more efficacious than pharmacological for agitation and/or aggression due to less adverse side effects, greater cost efficiency, and because they address underlying resident needs [11, 31]. Despite this knowledge, healthcare providers lacked education and training on how to administer different non-pharmacological interventions, thus serving as a crucial barrier to agitation care. This barrier reflects issues in resources along with knowledge and skills among healthcare providers. One reason for why knowledge and training are lacking is that processes of selecting and administering non-pharmacological interventions are largely unsystematic and reportedly based on trial-and-error [32]. Consequently, due to time constraints, healthcare practitioners interviewed in this study often resided to using pharmacological interventions rather than non-pharmacological, out of convenience. This issue was corroborated by Janzen et al.’s (2013) findings, where unpredictable environmental factors and healthcare provider and/or resident personal traits (i.e. personality) resulted in arbitrary selection of non-pharmacological approaches [9].

Through the discussions, a key theme that emerged was a need for better upstream, person-centred approaches for the prevention of agitation and/or aggression. For example, one participant noted that physicians are active in LTC and respond quickly to behaviours, but a separate participant pointed out that such responses typically resort to using chemical restraints (Additional File 3). This issue highlights how agitation and/or aggression are currently being addressed in a downstream manner, after behaviours have manifested. Ultimately, person-centred approaches to prevent agitation and/or aggression use individual unique characteristics, strengths, and weaknesses to recognize and meet individual unmet needs, thus preventing agitation and/or aggression prior to their onset [33]. A previous meta-analysis demonstrated that using person-centred care interventions significantly reduces agitation amongst other neuropsychiatric symptoms [33]. For example, the “Treatment Routes for Exploring Agitation” (TREA) program, along with other therapeutic recreation programs, provide tailored activities to residents, and have demonstrated a reduction of agitation between 10–14 days following completion of these interventions [33]. Therefore, a greater emphasis on person-centred, upstream interventions is needed in LTC to prevent the onset of agitation and/or aggression among residents.

Another issue brought up by family and/or friend caregivers, was the limited number of available non-pharmacological interventions in LTC. Non-pharmacological interventions follow a person-centred approach to address unique behavioural needs of each resident [34]. However, to tailor approaches to each resident, non-pharmacological interventions require extensive time and staffing resources to implement – both of which are lacking in LTC [9]. Both factors are common barriers to implementing non-pharmacological interventions across a range of behavioural symptoms in LTC [24]. For example, Hussin et al. (2021) noted several barriers to implementing non-pharmacological interventions for BPSD in LTC, including limited staff time and training [35]. Likewise, Oldenburger et al. (2022) reported that, although residents require approximately 4.1 h of care time per day to meet needs, they are only receiving about 2.45 h to 3.73 h of care per day [36]. The onset of COVID-19 has further exacerbated issues in staffing and time to provide care [36]. Due to these constraints, a restricted number of non-pharmacological interventions are offered in LTC, thus negatively impacting the quality of care for residents experiencing a variety of health conditions. Given the widespread negative impacts, upstream implementation research is needed to counteract these time and resource constraints, allowing space for more non-pharmacological intervention strategies in LTC.

A key barrier at acute/severe treatment for agitation and/or aggression was the reliance on physical and chemical (i.e., fast-acting medications) restraints to contain an acutely agitated and/or aggressive resident. This issue relates to challenges in regulating resident behaviours and reinforcement of practices. Acutely agitated and/or aggressive residents were considered at risk of harming themselves or others, thus as needed antipsychotic medications (e.g., Haldol) and mechanical restraints (e.g., chair with a seatbelt) were used. These measures carry significant risks to residents including a loss of dignity, social isolation, shame, and physical harm [37, 38].

Many LTC institutions across Canada have implemented a “Restraint as a Last Resort” policy, where the least restrictive pharmacological, environmental, mechanical, and physical restraints are administered as a last resort practice [39]. Across provinces, similar policies have been implemented by LTC organizers, including Alberta Health Services, Health Prince Edward Island, and the College of Nurses of Ontario [39‐41]. Despite least restraints being a shared goal across Canadian LTC centres, the discussions seemed to highlight an increased use of them among residents. Future studies should evaluate whether current uses of restraints across Canadian LTC centres are appropriate.

Several interviewees highlighted redirection, resident isolation and Gentle Persuasive Approach training. Other non-pharmacological approaches seen in the literature for acute/severe agitation and/or aggression include, but are not limited to, non-coercive verbal de-escalation or self-soothing techniques [42, 43]. However, there are barriers to the use of these interventions.

This study featured a myriad of perspectives from persons of differing roles in LTC (Table 1). Due to these diverse roles, different interviewees focused on different points of discussion. For example, physicians presented a clinical lens during discussions on the detection and diagnosis of agitation and/or aggression, along with corresponding pharmacological interventions. In terms of the latter, physicians spoke to barriers in using pharmacological interventions from the pathophysiological aspect, including drug-drug interactions, and biological mechanisms (Additional File 3). In comparison, nurses and allied healthcare workers focused on challenges in the administration of medications, while family caregivers and spouses focused on education barriers surrounding medication use. Furthermore, allied healthcare workers and nurses provided shared experiences regarding the coordination of care for agitation and/or aggression. In particular, allied healthcare workers (E.g.; occupational therapists, recreational therapists) had notable experience conducting non-pharmacological interventions with residents in LTC, and could speak to the barriers and facilitators they had encountered. Lastly, caregivers and spouses presented ideas throughout their interviews from the residents’ perspectives, with themes surrounding their perceived quality of life in LTC.

Few qualitative studies are currently available on the barriers and facilitators to neuropsychiatric care among Canadian LTC centres. Current qualitative literature identifies barriers and facilitators to small-scale implementations in Canadian LTC centres, such as the PIECES education framework [44], but broad-scale qualitative behavioural research has not been conducted. One systematic review exists on the barriers and facilitators to complex interventions for PLWD in LTC, but this study does not focus on widescale barriers to neuropsychiatric care in LTC, and only features 2 studies with a Canadian setting [45]. Taken together, this gap in research can have negative clinical implications, as key barriers to care in Canadian LTC centres are missed. This study thus serves as a crucial step in improving understanding of agitation and/or aggression care in LTC, accounting for a broad range of lived experiences and perspectives.

At a broader context, several findings consistent with studies conducted at a global scale were acquired. For example, interviewees detailed cost barriers, disproportionate staff-to-resident ratios, and limited time to provide care as barriers to coordinating and managing care in Albertan LTC facilities. These findings were also reported by Janzen et al. (2013) and McArthur et al. (2021), where limited time to deliver care and inadequate staffing were also systematic and pervasive issues [9, 30]. Similarly, environmental barriers to agitation care were found, including loud noises and unideal room configurations. This finding is corroborated by Cohen-Mansfield et al.’s (2012) study, where environmental conditions also served as barriers to administering non-pharmacological interventions for a range of behavioral symptoms [24]. Taken together, each of these barriers have served as perpetual challenges over the last decade in diverse LTC settings across North America. These findings thus demonstrate the need for a substantial global knowledge-to-action plan to address these pervasive challenges.

There were several limitations in this study. Despite aiming to interview participants from a broad array of backgrounds and disciplines, the majority (83.3%) of participants identified as White. The lack of diversity in our sample may not reflect the perspectives of persons of colour working or engaging in LTC. Likewise, cultural or spiritual barriers and/or facilitators may have been missed, that more often impact racial minorities across Canada. This bias could potentially impact the generalizability of our results to racialized Canadian communities [e.g., Indigenous, Black, Indigenous, Persons of Colour, etc.].

Several key barriers and facilitators to care for agitation and/or aggression among PLWD in LTC facilities were identified, at detection/diagnosis, care coordination/management, and mild-to-moderate and acute/severe treatment. Given that these barriers were mapped to the TDF, future research efforts can form a substantial knowledge-to-action plan by mapping these TDF domains to the COM-B and subsequently the Behaviour Change Wheel. Therefore, appropriate implementation strategies can be created to change behaviours in LTC to eliminate these barriers to care.