Barriers and facilitators to providing rehabilitation for long-term care residents with dementia: a qualitative study | BMC Geriatrics

Summary of participants’ characteristics

All four residents included in the study were females and their ages ranged from 65 to 85 years. They had been living with dementia for between 4 and 8 years and had been residents in LTC for an average of 2.5 years. The years of experience of working in LTC ranged from 11 to 29 years and 1.5 to 8 years for the staff and rehabilitation providers, respectively. We had only two males across all participant groups. While the data was analyzed by participant groups, the themes had contributions from all the groups.

Barriers and facilitators to rehabilitation in LTC

The identified barriers to and facilitators of rehabilitation in LTC for people living with dementia in LTC are summarized using the socioecological framework and COM-B (see Fig. 1). See Table 1 for a summary of the themes and supporting quotations. All participant groups (i.e., residents, family members, staff, and rehabilitation providers) contributed to each theme.

Intrapersonal level factors

Communication difficulties (physical and psychological capability, social opportunity)

Difficulties with communication were identified as a major barrier to the engagement of residents in rehabilitation activities. The rehabilitation providers indicated that as residents gradually lose the capacity to express their needs and to understand instructions, they might also struggle to understand the purpose of the activity or how to carry it out. For instance, some of the rehabilitation providers stated that some residents might think that the intention of an exercise was to hurt them and may become aggressive or agitated. As a result of the challenges with communication, our participants suggested ways of improving its effectiveness. They indicated that the communication strategies should be clear, concise, loud, and illustrated with pictures, gestures, or supported by assistive tools (e.g., walker). Our participants recommended the Gentle Persuasive Approach [29] as an important training for care providers working with people living with dementia, which emphasizes encouragement and functional activities to improve care providers’ understanding of dementia and strategies for effective engagement of residents.

Comorbidities (physical and psychological capability)

Another barrier to rehabilitation was the onset of other health conditions. Residents stated that health conditions like joint limitations, anxiety prevent them from engaging in activities they would have normally participated in. Similarly, the staff indicated that the residents experience a steep decline in functioning and capacity to engage in activities when they have other morbidities like fractures, pain, or delirium. They revealed that residents typically do not recover their premorbid status after the onset of dementia. The coexistence of mental health problems with dementia also presents additional challenges for rehabilitation providers as mental health experts are not usually involved in care. Thus, the mental health of residents is often treated with less priority once they are diagnosed with dementia. The fear of falling was also identified as a barrier to rehabilitation. Some of the residents have the potential to mobilize and engage in activities but are not doing so because they are afraid of falling. Consequently, their exercises are limited to bed activities.

Lack of motivation (reflective motivation)

One of the challenges rehabilitation providers encounters is an apparent lack of motivation from residents to participate in any meaningful activities. It appears that some would not respond to attempts to get them involved and engaged. The residents indicated that concerns about safety and having too many people in close proximity discourage them from participating in activities, especially group activities. However, some of the residents expressed that they are motivated to engage in rehabilitation activities because they have been active all their lives. Family members reinforced that residents’ predisposition to engage in activities is consistent with their personality.

The rehabilitation providers and staff narrated that they attempt several strategies to motivate residents including identifying their sources of motivation, bringing their family or spouses during activity (when feasible), or engaging them in discussions about their life experiences. They noted that while these strategies are not guaranteed to work all the time, they can be useful in getting the resident to participate in some activities.

The rehabilitation providers indicated that the use of functional activities like playing cribbage, baking, or walking for sightseeing improves compliance with rehabilitation activities. Residents, especially those who are not used to structured exercises, can relate better to meaningful functional activities. In this case, instead of asking the residents to “exercise,” they might ask them to engage in activities they will normally perform like dancing or exploring the environment.

Interpersonal-level factors

Family not available (social opportunity)

Our participants considered the involvement of relatives and family members as an important facilitator of the provision of rehabilitation for residents. The residents narrated how they used to engage in activities like walking with their loved ones before moving into the LTC home, they reported doing less walking presently. Rehabilitation providers also indicated that families provide “tips and tricks” for the engagement of residents in activities. In some cases, the Physiotherapists and Occupational Therapists instruct family members how to safely provide rehabilitation activities like range of motion exercises and walking for the resident.

On the other hand, some families expressed that their expectations about how their loved ones should be cared for were not being met. Some believe that the staff in LTC are not providing enough care for their loved ones, leading to frustration and anger. They often feel that the declining function of the residents is due to the poor quality of care they receive from the providers. Some advocated that there should be a form of education for families about dementia and how they can contribute to the care provision for the residents.

Lack of interdisciplinary practice (physical opportunity)

Our participants believed that collaborative effort among all caring professionals facilitates and improves the quality of care provision for residents. They highlighted the importance of interdisciplinary practices like communication, care, risk meetings, and coordinated care plans. However, it was noted that these practices even though desirable, are not commonly practiced due to time constraints and the heavy workload of the professionals.

Conflicting availability between residents and rehabilitation providers (physical capability, social opportunity)

The rehabilitation providers stated that one of the barriers to their work is having residents sleeping most times of the day, making it difficult to find a window of opportunity to work with them. It was indicated that for some residents, the wake cycle is reversed, where they are awake at night and sleeping during the day. The rehabilitation providers believe that the use of antipsychotic medication often contributes to extended sleep hours during the daytime. In response, some of the providers have adopted a flexible approach to their work, which includes varying the time they attend to the residents or varying their care plans. They also wanted the medications to be given at different times so that the residents could be more active during the day.

Policy/environmental level factors

Access to resources (financial, equipment and space) (social and physical opportunity)

Equipment like mobility aids (e.g., wheelchairs), transfer belts, and standing frames would aid rehabilitation activities but are often not available in the homes resulting in frustrations for the rehabilitation providers and the patients. Similarly, rehabilitation activities are also limited by the lack of dedicated safe spaces like exercise rooms, or gyms. For instance, some residents stated that they would like to walk more frequently and visit the exercise room but are limited by safe spaces and appropriate equipment. Rehabilitation providers also highlighted that such equipment and spaces are important for safety, reduced distraction, and good interaction during rehabilitation activities. However, low access to these equipment and spaces is mostly due to financial limitations as most are expensive and with limited sources of funding.

Complex admission processes (social and physical opportunity)

The process of admitting residents into LTC homes was identified as a limiting factor in the planning and delivery of rehabilitation in the homes. Most of the residents are admitted at a very late stage of dementia when they have lost a considerable level of function, and late admission means that providers have a shorter time to plan and deliver quality care. In addition to late admission, it also takes some time to complete the paperwork and put resources in place which might affect the initiation of rehabilitation activities.

Transitions from acute care settings like hospitals to LTC are also complex and complicate the rehabilitation process. The respondents stated that when hospital patients are earmarked for admission to LTC, care priorities shift to those who are transitioning home, resulting in neglect of the hospital patients transitioning to LTC. In addition, these hospital patients experience prolonged wait times before eventual admission which often results in a decline in function when they get to LTC. There is also an apparent communication gap between the acute hospitals and the LTC homes where the discharge note does not correspond with the functional state of the hospital patient and/or the services provided in the hospital (e.g., occupational therapy) thereby resulting in frustration for LTC staff and the family.

Low staff ratio (physical opportunity, physical capability)

The respondents indicated that there is a low staff ratio in the homes, resulting in excessive workloads which often overwhelms the care personnel. The high workload of other staff members such as nurses, and support care personnel (Continuing Care Assistants, Physiotherapy and Occupational therapy Assistants) means that they are unable to engage the residents in rehabilitation activities like range of motion and walking as they are overwhelmed by other tasks. In addition to being short-staffed, the physiotherapists and occupation therapists are occupied by other activities such as risk meetings, meetings with the families, and documentation (chart and progress notes) which further reduces the available time to do actual rehabilitation work, resulting in them “picking and choosing” who to see. The low staffing has implications for the residents, who confirmed that only a handful of rehabilitation providers attend to all residents of the home and thus they receive limited care from them. One of the residents illustrated that they expected three visits per week from rehabilitation providers but would count themselves lucky if they got any.

Moreover, there is also a shortage of volunteers who usually offer support services in LTC homes. The volunteers play a range of roles in the homes which can relieve the workload on staff and also improve residents’ mood and participation in rehabilitation activities. The outbreak of the COVID-19 pandemic resulted in the reduction of the number of people volunteering services in the homes. This trend has persisted even after the relaxation of the restrictions imposed during the pandemic. Despite the relaxation of restrictions imposed during the pandemic, volunteers continue to stay away from the LTC homes.

Location of the LTC facility (physical opportunity)

The respondents stated that being in rural areas affects the recruitment and retention of rehabilitation providers as they might prefer to work somewhere else. Proximity to stores, and schools could improve functional rehabilitation activities like outdoor walking and community engagement for residents. However, some of the LTC homes are situated far from these resources thereby limiting the scope of possible activities. The importance of location in the ability to engage in walking activities was also confirmed by some of the residents who stated that their current home has more limitations than where they were living previously.

Restraint policy (physical and psychological capability, social opportunity)

The prevailing policy in LTC emphasizes risk prevention aiming to prevent residents from sustaining injuries from falls. In some cases, this could mean restraining those who are perceived to be at risk of falling or injuries in wheelchairs and preventing them from engaging in activities. Restraints refer to the limitation of residents’ movements or behaviours to minimize the risk of harm to themselves or others [30]. This includes of physical (e.g., belts, bed rails) or medications (sedatives or antipsychotics) to restrict movement and behaviour [30]. In addition to physical restraints, medications are sometimes used to restrain residents who are displaying potentially harmful behaviours from engaging in activities. This is a barrier to rehabilitation as restrained residents are less likely to engage in any activities and might also discourage rehabilitation providers from engaging them in activities like walking. It was also indicated that mobilizing or encouraging such residents to mobilize comes with additional risks as they might be blamed if there is an eventual adverse event like falls or injuries.

Noisy or busy environment (social and physical opportunity)

Our participants suggested that the nature of the environment affects the mood of the residents and their likelihood to engage in any activity. Residents who like quiet and serene environments might withdraw from all activities when there is noise and activities around them. For instance, some residents stated that they decline participation in group activities because they are not comfortable in noisy or crowded spaces. This was confirmed by staff members who stated that many residents stay in their rooms when holiday activities are going on. Moreover, residents with visual or auditory impairments find it difficult to follow instructions in noisy and busy environments.

COM-B, intervention functions, and policy categories

Using the Capability, Opportunity, and Motivation (COM-B) model, we present in Table 2 what needs to change to improve rehabilitation for LTC residents living with dementia as well as linked intervention functions and policies to bring about the change. A summary of the plausible intervention functions and policies to stimulate the changes based on the APEASE criteria are presented below.

Intervention functions

We linked the identified barriers to seven intervention functions: restriction, enablement, training, education, environmental restructuring, modelling, and persuasion. Restriction involves using rules to promote target behaviour by reducing opportunities for engaging in less desired ones. Enablement aims to reduce barriers by enhancing the means to achieve behavioural change, increasing capabilities beyond education and training, and expanding opportunities beyond environmental restructuring. Training improves necessary skills, while education enhances knowledge and understanding of the behaviour. Environmental restructuring modifies physical and social contexts to improve capabilities and opportunities. Modelling creates exemplary behaviour for others to imitate, and persuasion stimulates change by inducing positive or negative feelings [18].

Restriction could be used to tackle the barrier associated with the transition from acute to LTC, rules could be set to improve communication and collaboration between acute, sub-acute, and LTC institutions. Enablement could be used to increase the capability of the staff and providers and overcome the barrier of low staffing through increased recruitment and creating opportunities for more volunteer services. Three barriers; restraint policy, lack of interdisciplinary practice, and communication difficulties were linked to training intervention. Skills training offers opportunities and capabilities to overcome these barriers. Similarly, three barriers including family involvement, shortage of volunteers and communication difficulties were linked to education. With adequate education about dementia management and the potential contributions of the public in care delivery, family members and community dwellers could be offered the opportunity to volunteer their services. Moreover, increasing staff and providers’ knowledge about responsive behaviours and effective communication strategies can improve their capability to provide care for residents.

Restructuring the physical environment of the LTC homes through the creation and procurement of spaces and equipment for exercise can improve the opportunities for more residents to engage in rehabilitation activities. Communication difficulties were also linked to modelling, demonstrating activities might improve residents’ understanding of the instructions and their capability to execute such activities. Finally, persuasion was linked to a lack of motivation to engage in activities. The motivation of residents to engage in activities might be improved by adopting a person-centred approach. This might include identifying their personal preferences, sources of motivation, and their limitations.

Policy categories

In the final level of analysis, we considered policies that will support the delivery of the interventions described in the previous section. A total of five policy categories were identified and they included regulations, guidelines, communication/marketing, environmental/social planning, and fiscal measures. These policies represent decisions that policymakers can use to implement the interventions [18]. Guidelines are policy documents that recommend or mandate practice while regulations are laid down rules and principles to guide behaviour and practice. These could be used to set practice standards and minimum training requirements to competently provide direct care to residents. Communication/marketing involves mass media campaigns to educate and inform stakeholders about the need for change and the means of achieving it. This could include public awareness campaigns targeting the providers, the family, and the community, reinforcing the integral roles they play in the provision of rehabilitation for residents with dementia in LTC. Environmental/social planning refers to the control and design of the physical and social environment to improve the capability and opportunity for care provision while fiscal measures on the other hand involve the use of public tax systems to control the financial costs of practice or behaviour. These two are related as fiscal measures could be used to improve the physical and social context thereby improving the opportunities and capabilities to provide competent and quality care.