Barriers, facilitators and impact of the COVID-19 pandemic on the physiotherapy intervention for people with dementia or cognitive impairment

A questionnaire specifically designed for this purpose was developed using a methodology divided into 2 distinct phases: Phase 1 (November 2020), content was pre-selected based on existing literature in this area [20, 21]; Phase 2 (December 2020), 2 meetings were held involving 4 physiotherapists with more than 5 years of experience in dementia care, for validation of additional content.

In Phase 1, the research team was dedicated to fully understand the context of rehabilitation delivery in-home care for frail people during the pandemic, collecting recent and crucial related studies. At the end of this phase, different domains were pre-selected for validation in the next phase, such as (i) critical mechanisms for referencing patients; (ii) relevance of monitoring processes; (iii) fears related to exposure risk, and others.

In Phase 2, the pre-selected domains were discussed and validated by 4 expert physiotherapists who were invited for an online session (25 minutes). Following this were 20 minutes of open discussion on new ideas for barriers and facilitators in delivering rehabilitation and for domains of the impact in rehabilitation limited access for people with dementia in the COVID-19 pandemic.

The questionnaire began by asking for participants’ informed consent and study participation approval. Then it was divided into different domains: (i) characterization of people with dementia or cognitive impairment (most prevalent age groups, diagnosis of cognitive impairment, dementia diagnosis); (ii) characterization of the physiotherapists’ work context (home, hospital, health center, continuing care unit, clinic/office, other); (iii) characterization of physiotherapists’ professional experience (expertise in the field (years), experience in projects development in a multidisciplinary team, experience as a certified trainer in the field, seminars / congresses, postgraduation in the field, academic degree in the field); (iv) physical therapy strategies used for taking care of people with dementia or cognitive impairment – (aquatic therapy, multisensory therapies, exercise, touch, gamification, reminiscence). Finally, this questionnaire provided three different lists to characterize the challenges experienced by physiotherapists taking care of people with dementia and cognitive impairment during the COVID-19 pandemic, namely:

• factors considered barriers to access/results obtained with physiotherapy using a scale of 0 (any impact) – 5 (severely affect);

• factors considered to facilitate access/results obtained with physiotherapy using a scale of 0 (does not facilitate) – 5 (fully facilitates);

• impact of the pandemic on the physiotherapy process using a scale of 0 (without impact) – 5 (total impact).

This questionnaire was made available online using a Google Form and disseminated within physiotherapists working in mental health in Portugal, allowing it to be completed during the month of January 2021.

Data analysis was performed using descriptive measures, including frequencies and also mean and standard deviation (x ± SD). Specifically, the professional experience and training of physiotherapists, as well as the characterization of the population with dementia/cognitive impairment in physical therapy were described based on frequency analysis. Additionally, the barriers and facilitators, as well as the impact in accessing/obtaining results for physical therapy intervention in times of pandemic, were analyzed, taking into consideration the % of 5-point quotation and x ± SD values.

The characteristics of workplace, professional experience and training of the surveyed physiotherapists are shown in Table 1.

The characteristics of those treated by the questionnaire participants concerning age, cognitive impairment and dementia are shown in Table 2.

In the analysis of barriers to accessing/obtaining results in physiotherapy by people with cognitive decline/dementia, the average results indicated 8 factors as moderately important: (i) insufficient or inappropriate referral mechanisms; (ii) interruption of rehabilitation processes/restricted access to specialized monitoring in a prophylactic isolation context; (iii) difficulty in accessing and using computer systems for sessions (in real time; for autonomous work) of telephysiotherapy (digital literacy); (iv) reduced mental health literacy; (v) difficulty in referrals to other professionals (in periods of exacerbation; new symptoms); (vi) adherence to treatment in its new formats (e.g., resistance to assume new responsibilities in physiotherapy treatment); (vii) fears of the patient and family associated with the pandemic situation; (viii) low motivation of the family-user dyad.

The following factors were indicated as severely limiting access/obtaining results in physiotherapy: (i) disruption in the routine of the person with dementia and caregiver; (ii) breakdown in social interaction (isolation, distancing from your social networks); (iii) personal protective equipment (PPE) and physical distancing hindering communication and impacting on the relationship with the person with dementia, which can lead to behavioral changes (Table 3).

Considering the % of answers scoring 5 (severely affects the physiotherapy process), at least 3 barriers could be highlighted: interruption of rehabilitation processes/restricted access to specialized follow-up in a prophylactic isolation context; (ii) disruption in the routine of the person with dementia and caregiver; (iii) breakdown of social interaction (isolation, distancing from your social networks).

Considering the analysis of the facilitators in accessing/obtaining results in physiotherapy for people with cognitive impairment/dementia, the results indicated only 2 factors as residually important: (i) valuation of going outside by people with dementia; (ii) alternative ways of dealing with the mental health problem (e.g., more information available; concerns with management of communication using PPE) (Table 4).

The following factors seem to be considered negligible, as they represented just over 10% of responses scoring 5 points (high impact): alternative ways of dealing with the mental health problem (e.g., more information available; concerns with the management of communication using PPE); enhancement of the caregiver’s ability to decentralize from the act of caring, trusting and delegating their competencies to the reference professionals. All other factors were considered as moderate facilitators.

When assessing the impact of the pandemic on the rehabilitation process of people with cognitive decline/dementia, the average results indicate 3 factors that generated a severe impact on the rehabilitation process, namely: (i) worsening of the clinical status (including comorbidities) of the person with dementia; (ii) increased risk of falling; (iii) change in opportunities to practice physical activity (Table 5). The first two factors also coincided with the highest percentage of level 5 responses (>50%). The impossibility of holding group sessions also seems to have an important impact, as considered by physiotherapists working in the area.

The results of the present study indicate three main barriers to accessing or obtaining good results in the rehabilitation process of these patients, namely: (i) interruption of rehabilitation processes/restricted access to specialized monitoring in situations of prophylactic isolation; (ii) break in the routine of the person with dementia and caregiver; (iii) break in social interaction (isolation, distancing from your social networks). It is essential to reflect on the possible impact of (i) the interruption of rehabilitation processes/restricted access to specialized monitoring in situations of prophylactic isolation during the COVID 19 pandemic, but also in other social restricted contexts (e.g., geographically isolated contexts or seasonal conditions). This factor has the potential to exacerbate the functional dependency of individuals with dementia/medium-term cognitive decline, as suggested by Eklund et al. [22] in a longitudinal study of continuous care for frail elderly people over a year. In this study, the authors refer to the importance of continuous care in a multidisciplinary team to guarantee reasonable levels of independence during activities of daily living, but also to prolong the possibility of these people ageing with quality in their homes.

Regarding the importance of breaking the social interaction and routine of people with dementia/cognitive impairment during the COVID-19 pandemic, it is important to understand the significance that new technologies can have in compensating for these factors. For example, during these critical periods of isolation, people with dementia/cognitive impairment would benefit from the implementation of digital tools (e.g. exergames), as these are methodologies capable of providing rewarding experiences of interaction between players (socialization experiences), thus also allowing caregivers to engage in pleasurable activities [23]. Exergames have been presented as a relevant tool to motivate elderly people to exercise regularly alone at home, especially in the case of physically and cognitively frail elderly [24]. On the other hand, technologies can also facilitate the development of virtual physiotherapy programs/sessions for people with dementia/cognitive impairment. The authors Cheung and Peri [25] reported the various experiences carried out in the virtual monitoring of these patients in the context of a pandemic, indicating fundamental factors for their success, namely, training for facilitators (in this case, physiotherapists), the adequacy of virtual programs to users’ expectations, as well as the importance of ensuring easy access to the platforms used.

Regarding the facilitators in the rehabilitation process of people with dementia/cognitive impairment during the COVID-19 pandemic, it is important to discuss some factors that were surprisingly considered to be of residual significance. For example, for people with dementia, the appreciation of going outside does not seem to have facilitated the rehabilitation process. In an exploratory study on the impact of the pandemic on changing the lifestyles of elderly people, Di Santo et al. [26] reported that many participants began to spend more time in passive recreational activities, reducing opportunities for meaningful activities outside. Moreover, the caregiver’s ability to decentralize the act of caring, trusting and delegating their skills to reference professionals was poorly regarded as a facilitator of physiotherapy outcomes. In fact, this could be partially explained by the consensus that standard therapy for people with dementia and their families is focused on having a productive daily routine, which is obviously dependent on the caregiver’s engagement [27], and not in decentralizing the act of caring to other health professionals. The caregiver is crucial for the well-being of people with dementia, especially in promoting physical activity. A previous study [28] explored the determinants of physical activity for older adults with Alzheimer’s disease and highlighted the crucial role of caregivers in mediating participation in physical activity care. Caregivers may decide about program participation, treatment and interventions, provide task assistance, or encourage engagement, and therefore they are considered a central piece of this puzzle.

Three factors had a severe impact on the rehabilitation process, namely: (i) worsening of the clinical state (including comorbidities) of the person with dementia; (ii) increased risk of falling; and (iii) change in opportunities to practice physical activity. The first two factors also coincided with the highest percentage of level 5 responses (>50%). The impossibility of holding group sessions also seems to have had an important impact for physiotherapists working in the area. Working in a group to deliver physical activity specialized programs for people with dementia is not a novelty. However, a recent study aimed to characterize the major determinants of the success of such programs and concluded that people with dementia and their carers enjoyed attending an exercise class, especially if they knew that (i) the class had been developed for people with dementia and their family carers, and (ii) it was facilitated by professionals and volunteers with knowledge of and previous experience with dementia [29].

Interestingly, evidence supports the idea that exercise interventions reduce the risk of falls in people with cognitive impairment, as confirmed by a systematic literature review that was conducted in 2021 [30]. This review explained that at least 30% of positive results in reducing falls are explained by exercise-based interventions. In a crisis context, such as the COVID-19 pandemic, thinking about engaged strategies for physical activities might be difficult for physiotherapists, as it depends on complex and personal approaches, such as linking exercise therapy to a client’s daily life, discovering changes in daily life, and making structured preparations for clients to begin physical activity [31]. All these strategies are very difficult to implement in a context where the physiotherapist’s physical contact is limited, and therefore it could explain why the opportunities to practice physical exercise changed.

From a different perspective, in order to increase the opportunities in physical activity practice, and despite the context of COVID-19 pandemic, other baseline limitations must be considered because of the dementia diagnosis. Telenius et al. [32] highlighted apathy and lack of initiative, memory problems and confusion, dependence on others and lack of access to dementia-specific exercise programs as constituting important barriers to participation in physical activities for this group of people. They also maintain that such participation must be perceived as a fun and meaningful experience.

Moreover, the social isolation caused by the pandemic could contribute to explaining the increased risk of falling, bearing in mind that, in this period, frail old people avoided participating in different outdoor activities, tending to lose physical abilities, such as balance [33]. Due to the worsening health status in people with dementia, physiotherapists should design a more comprehensive physiotherapy strategy. One of the most important recommendations was to think of caregivers as having a crucial role in mediating this process [33]. However, this poses new challenges for physiotherapists, as we know that informal caregivers are unfamiliar with physiotherapy’s aims and strategies [34], and this might create difficulties in their role in supporting the adoption of new physical activity habits.

The questionnaire was specially designed for this study using a panel of experts in the area to discuss and select the special content to be included, but was only validated by a group of experts regarding its content. However, it refers to a special, new, and emergent global context, namely, the COVID 19 pandemic, which justifies the designing of brief, easy, and simple appropriated methodologies. This questionnaire could be a basis for continuing the investigation into access to physiotherapy for people with dementia, specifically in other critical periods for global public health. Another limitation is the lack of information on the demographic data of the participants, including gender and age, since these may be important determinants in the collected data. However, data related to the professional experience, which may be the most relevant regarding the aims of the study, were collected in detail. Moreover, only data on physiotherapy perceptions and attitudes were collected and the perspectives from the person with dementia and other stakeholders were not considered. Future research might combine the caregiver’s perceptions and attitudes, mainly because there is a tendency for caregivers to be unfamiliar with physiotherapy approaches.

The results presented in this study were collected 2 years ago (2020–2021), yet they have crucial importance for longitudinal research designing in people with dementia. Due to the importance of physiotherapy as a way to engage people with dementia in physical exercise approaches, future research might be focused on inhibiting the effects of the pandemic in physical and psychosocial domains, by implementing exercise – and physiotherapy-based programs in people with dementia. These studies should be carefully designed to compare (in the long term) people with different repertoires of limiting access to physiotherapy during the pandemic.